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Please Give Us Your Facts

Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: TNBC Polls & Surveys
Forum Description: A place to ask questions and survey the community
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=78
Printed Date: Apr 21 2018 at 3:02pm
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Topic: Please Give Us Your Facts
Posted By: lucky
Subject: Please Give Us Your Facts
Date Posted: Jul 03 2007 at 7:50am
It all means that even if you are  ER-  and  Pr -   BUT  are  Her2neu +  .....  then the drug  Herceptin would be effective as an inhibitor.
On the other hand,  if you had  ER +  and  Pr +  but were  Her2neu -
.......   you could get the other class of drugs like Tamoxifen, Femara, or Arimidex.
Therefore,  if a person is  ER and Pr negative ......  drugs like the Tamoxifen kind   would NOT be effective.
However,  if  the Her2neu status is Positive ...... even though the ER and PR are negative ..........
they could be given the effective drug Herceptin.
 
To sum it all up: 
 
Cancer Inhibitors > >      ER and PR   Positive =  drugs like Tamoxifen
                                       Her2neu     Positive =   the drug Herceptin
                                       Triple Negative  =  NO drugs available Yet!
 
About the survey:   We could gather our own survey info by a category
such as -    " Please Give Us Your Facts"
 
1/   How old are you
2/   Where were your born and where have you lived
3/   What is the specific name of your type of cancer Other than it being
       triple negative
4/   What is your blood type
5/   Are you a drinker or a smoker
6/   Has anyone else in your family had Any kind of cancer
7/   How many pregnancies have you had
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox
9/    Did you have any symptons of your breast cancer
10/  How was your cancer first discovered
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur
12/  How often did you have mammograms Before you were diagnosed
13/  Have you ever had a traumatic blow to your body and where was it
14/  Have you ever had your hormones checked Prior to being diagnosed
15/  Before you were diagnosed, what medications were you on
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed
Etc.   
 
Everyone could add even more questions for Our survey.
 
Originally posted by Ssclark8267 Ssclark8267 wrote:

Sorry for my complete lack of understanding on this --
 
is Her2/neu a gene or a protein? 
is Her2/neu what you want to have, rather than positive or negative?
 
I'm assuming Her2/neu is "neutral" on the status of the gene or protein.  But how can you be neutral on a gene? Don't you either have the gene, or not?
 
Back to the survey idea--
 
Does the TNBC exec board have a way (or would they be willing) to pull together the data that we put into these emails? 
 
For example, if we send demographic data to this website, could they assimilate it centrally, and then, (just an idea for us to build on)-- send the compilation out once a week so that we can all see the data.?
 
Or is there a better way to accomplish that?  It's easy to think of questions that we can ask each other.  But lining them up by person and by answer needs to be handled centrally (at least the way I'm thinking).
 
Let's say (for simplicity) that we found that ALL of us are blood type A negative, and we all drank Bacardi rum every night, and that we all live near  water treatment plants.  We need a way to be able to SEE that in one place (like on a matrix).    
 
Any ideas?
 
 


-------------
I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???



Replies:
Posted By: Bunnysmama
Date Posted: Jul 03 2007 at 8:23am

There are a million questions we could ask on a survey like this.  Hopefully this is where an expert can step in to direct and focus the information.

A couple other questions that quickly come to mind:
 
1) Have you ever been on birth control?  For how long?  What kind?
2) If you have children, did you breastfeed?  For how long?
3) Do you have dense breast tissue?
4) Have you tested positive for BRCA1/2?
 
If I come up with others, I'll add them in.
 
Happy 4th of July to all of us living in the United States!


Posted By: MarilyninMiami
Date Posted: Jul 04 2007 at 6:14am
lucky,
i am assuming you would like answers to the thoughtful questions you posed so here goes:
1.  60, age 58 at dx
2. lafayette, indiana, now in miami, fl. only lived in indiana & fl
3. IDC, stage 2b, grade 3, basal like, trip neg
4. 0 pos
5. no never have been, other than occasional glass of zinfandel
    now extremely allergic to smoke!
6.  yes, both paternal and maternal g mothers had ovarian ca, g mothers sister had br ca, father and uncle had prostate ca, uncle and cousing colon cancers, mother cervical ca  ..i did genetic testing; brac1,2 neg
7. one pg
8. mumps, measles, chicken pox
9. i had fatigue for one yr prior to dx
10. i discovered my lump (high on my chest, didnt think it was breast tissue)  the day after doing some pull up's ...thought it was exercise related muscle pull
11. no, thank god!
12. had frequent mammo's...very dense breast tissue.  fibrocystic disease. had a neg mammo just 8 mo prior to finding my lump
13.  had 2 mva's (within 2 wks of each other) just 2 months after finishing chemo ....have ongoing neck pain
14. yes, and used vivelle estrogen patch for 10 yrs following total hysterectomy, oophrectomy for severe endometriosis (anectodally, have found quite a few br ca pts have endo)
15. on meds for hypertension, high cholesterol, asthma, gerd
16. many antibiotics for years for ear infections, lung, abcess etc...now have cholesteatoma in ear from repeated ear infections...
 
maybe we can find some commonality with our answers....hope this helps!
marilyn...happy 4th!
 


-------------
MARILYN from Miami
dx:6-05, trip neg, basoloid, gr 3, stage IIB, lumpectomy,SNB w total axillary node surg 3pos/34 dose dense ACT, 33 rads, BMB (neutropenia) NED!!


Posted By: lucky
Date Posted: Jul 04 2007 at 11:41am
Hi,
 
Thanks so much for answering these questions.  Clap
 
I lived for awhile in Miami - near Coral Gables.  Was born in New York,  and now live in Toronto, Canada.   Also lived in Central American for about 4 years.
Hmmm.......   interesting about question #9.   I also felt alot of fatigue before I was diagnosed.  Also, had frequent mammograms and dense breasts.   I take Altace for the past 5 years for hypertension.  I was diagnosed at 56 -  am now 57. 
My cancer is extremely rare -  only  1 - 1.4 % of the population have my kind.    (  glycogen rich clear cell carcinoma of the breast )  Grade II/III
My 3 sisters all had  Mumps, Measles and Chicken Pox as children.
I never caught those childhood diseases. 
Don't smoke -  seldom have a glass of red wine.
No incidence of any kind of cancer in my family -  even going back several generations.
Used birth control pills for about 5 years when I was in my 20's.  Norinyl 1+50  was the name of it.
Have seldom used antibiotics.
Blood type is    B Positive
 
Would everyone else like to answer the list of questions I posted,  Please.
 
I agree -  Let's see if we can find a common denominator amongst all of us.   Clap
 
Thanks everyone
 
 
Originally posted by MarilyninMiami MarilyninMiami wrote:

lucky,
i am assuming you would like answers to the thoughtful questions you posed so here goes:
1.  60, age 58 at dx
2. lafayette, indiana, now in miami, fl. only lived in indiana & fl
3. IDC, stage 2b, grade 3, basal like, trip neg
4. 0 pos
5. no never have been, other than occasional glass of zinfandel
    now extremely allergic to smoke!
6.  yes, both paternal and maternal g mothers had ovarian ca, g mothers sister had br ca, father and uncle had prostate ca, uncle and cousing colon cancers, mother cervical ca  ..i did genetic testing; brac1,2 neg
7. one pg
8. mumps, measles, chicken pox
9. i had fatigue for one yr prior to dx
10. i discovered my lump (high on my chest, didnt think it was breast tissue)  the day after doing some pull up's ...thought it was exercise related muscle pull
11. no, thank god!
12. had frequent mammo's...very dense breast tissue.  fibrocystic disease. had a neg mammo just 8 mo prior to finding my lump
13.  had 2 mva's (within 2 wks of each other) just 2 months after finishing chemo ....have ongoing neck pain
14. yes, and used vivelle estrogen patch for 10 yrs following total hysterectomy, oophrectomy for severe endometriosis (anectodally, have found quite a few br ca pts have endo)
15. on meds for hypertension, high cholesterol, asthma, gerd
16. many antibiotics for years for ear infections, lung, abcess etc...now have cholesteatoma in ear from repeated ear infections...
 
maybe we can find some commonality with our answers....hope this helps!
marilyn...happy 4th!
 


-------------
I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???


Posted By: Joan2844
Date Posted: Jul 07 2007 at 5:25am
 
1/   How old are you 40 years old; dob 7/17/1966
2/   Where were your born and where have you lived born SE Indiana; lived in MI since 1988. Lived 4 years in Brussels Belgium
3/   What is the specific name of your type of cancer Other than it being
       triple negative poorly differentiated invasive ductal carcinoma; left breast
4/   What is your blood type O-pos?
5/   Are you a drinker or a smoker never smoked; regular wine drinker
6/   Has anyone else in your family had Any kind of cancer not immediate family; cousins; one  aunt with bc
7/   How many pregnancies have you had 3 live births; 1 miscarriage
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox chicken pox;
9/    Did you have any symptons of your breast cancer found lump myself; some physical discomfort got me feeling around
10/  How was your cancer first discovered found lump; requested mammogram
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur still in primary treatment
12/  How often did you have mammograms Before you were diagnosed 1
13/  Have you ever had a traumatic blow to your body and where was it no
14/  Have you ever had your hormones checked Prior to being diagnosed no
15/  Before you were diagnosed, what medications were you on Protonix for acid reflux
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed no

1) Have you ever been on birth control?  For how long?  What kind? yes; ortho-novum; on and off for 10 years
2) If you have children, did you breastfeed?  For how long? no;
3) Do you have dense breast tissue? no
4) Have you tested positive for BRCA1/2? tested negative for both
5) Exercise and diet? both are poor; do not regularly exercise. With three kids, fast food
6) weight? about 25 lbs overweight



Etc.   


-------------
9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda.
4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa.

NED since May 2008 :-)
www.wow-matt14.blogspot.com


Posted By: lucky
Date Posted: Jul 07 2007 at 1:47pm

Thank you Joan!   Clap

 
Can we hear from everyone else Please ?
 
There are lots of Members listed on here -    ladies where are you when we need you ??    LOL
 
 


-------------
I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???


Posted By: Lisa L
Date Posted: Jul 07 2007 at 3:31pm
1/   How old are you  44, 42 at dx
2/   Where were your born and where have you lived Bloomington Illinois all my life
3/   What is the specific name of your type of cancer Other than it being
       triple negative  Invasive Ductal Carcinoma
4/   What is your blood type B i think
5/   Are you a drinker or a smoker no- neither
6/   Has anyone else in your family had Any kind of cancer  my father had cancer of the pharynix
7/   How many pregnancies have you had  2
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox  Chicken pox, 5th disease, mono
9/    Did you have any symptons of your breast cancer  lump appeared after my mammo, with in days, also fatigued for at least a year
10/  How was your cancer first discovered  myself
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur  NO, currently NED
12/  How often did you have mammograms Before you were diagnosed  yearly
13/  Have you ever had a traumatic blow to your body and where was it  Had stitches in my nose , knee and mouth. otherwise, no broken bones etc
14/  Have you ever had your hormones checked Prior to being diagnosed  No
15/  Before you were diagnosed, what medications were you on  Birth control, paxcil
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed  no
Etc.   
1) Have you ever been on birth control?  For how long?  What kind?  20 years, up to dx  Tri-pahsil
2) If you have children, did you breastfeed?  For how long?  no
3) Do you have dense breast tissue?  yes
4) Have you tested positive for BRCA1/2?  been tested - negative for both
5) Exercise and diet? generally poor diet, love sweets, dont exercise regularly.
6) weight?  Used to be skinny as a rail, now about 25 lbs overweight


-------------
Dx 8/05 age 43
mast & lat flap 10/05
Triple neg
BRCA neg
IDC 4.5cm rt br
0/1 sen node
6 A/C 5 Taxol, 25 rads 11/05-6/06
Central Illinois
Currently NED


Posted By: lucky
Date Posted: Jul 07 2007 at 9:03pm
Thank you Lisa !    Clap
 
 


-------------
I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???


Posted By: myrnainc
Date Posted: Jul 08 2007 at 5:48pm
1/   How old are you / 56
2/   Where were your born and where have you lived / Ontario Canada/Ohio/Oklahoma
3/   What is the specific name of your type of cancer Other than it being
       triple negative IDC
4/   What is your blood type/ not sure
5/   Are you a drinker or a smoker/ not a drinker, did smoke
6/   Has anyone else in your family had Any kind of cancer/ dont know adopted
7/   How many pregnancies have you had/ 5/ 3 miscarrages
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox/ not sure
9/    Did you have any symptons of your breast cancer/ brusing, tired
10/  How was your cancer first discovered/ I found lump
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur/ out one year last month clear so far :)
12/  How often did you have mammograms Before you were diagnosed/ yearly was 6 months late getting one though
13/  Have you ever had a traumatic blow to your body and where was it/ sure, fell off ladder/fell off step/ knocked out in an attack in a parking garage about 15 years ago/ fall alot but not due to drinking, goofy dogs underfoot :)
14/  Have you ever had your hormones checked Prior to being diagnosed/no
15/  Before you were diagnosed, what medications were you on/ dang estrogen for anout 20 years after hysteresctomy due to cysts, also had several breast cysts
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed/ yes had a dentist doing a root cannal go into sinus, bad infecion, then implanted tooth got infected 6 months later
Etc.   


Posted By: lucky
Date Posted: Jul 08 2007 at 8:02pm
Thanks Myrna !    Clap
 
I've noticed that women who have lived in colder climates seem to have a higher rate of cancer.   Could it be from the use of burning  coal stacks that industries use to provide heat and energy ??
 
I read somewhere that firemen are now being given workmens compensation because of their exposure to pollutants on the job -  like smoke inhalation.   Something equivalent to what coal miners get ( black lung )
 
This is why I am asking every member on here to Please answer the above questions.   We may just have to convince our cities, states, and countries,  to stop the use of coal burning.
 
C'mon ladies -   answer the call -   the lives we save might be our own !
 
Thank you ! 


-------------
I have: "Glycogen Rich Clear Cell Carcinoma of the Breast." Does Anyone else have this Rare form of breast cancer ???


Posted By: Molennium
Date Posted: Jul 10 2007 at 8:10am
I don't have triple negative cancer but I do have glycogen-rich clear cell carcinoma of the breast - but mine is oestrogen and progesterone positive and grade 1, although veering towards grade 2 (brought down by low proliferation scores). I am blood group B negative
 
 
1.  51, age 48 at dx
2. Now living in London
3. IDC, with DCIS stage 1, grade 1, glycogen-rich clear cell
4. no lymph node involvement
5. I do drink, in past binge drank a bit at parties. I used to smoke, now don't and complain about smokers smelling foul plus making the environment bad
6.  My grandmother died of stomach cancer, my great great grandmother got bowel cancer, my uncle got lung cancer but no history of breast cancer
7. No pregnancies
8. mumps, measles, chicken pox, glandular fever (Epstein Barr virus is associated with higher risk of one cancer can't remember which)
9. I felt extremely healthy was walking 8 miles each saturday and climbing five flights of work each morning in work. Noticed bulge in side of breast in mirror.
10. As above, saw a bulge in side of my breast and then felt a mobile rubbery lump
11. No sign of recurrence
12. I had some mammograms in 1997 when I developed breast pain. That was enough to put me off them. Had more in 2003 when I found the lump, but nothing showed up as I have dense breast tissue.
13.  Bruised my bosom on one occasion
14. Used pill continuously without breakthrough monthly bleeds through twenties and thirties
15. Not on any medication
16. Took lots of antibiotics for acne


Posted By: trip2
Date Posted: Jul 10 2007 at 12:03pm

Hello Molennium, welcome to our group.

 
There is another lady on this board that has glycogen-rich clear cell carcinoma.  She has been trying really hard to learn more about this type of breast cancer.
 
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Molennium
Date Posted: Jul 12 2007 at 10:57am
I did hear from JaneRA that there is another woman here which is why I decided to come although I don't have triple negative cancer, my glycogen-rich clear cell version of breast cancer is oestrogen and progesterone positive.
 
I've never found anyone else with it either.
 
Mole


Posted By: trip2
Date Posted: Jul 13 2007 at 6:10am
Hi Mole well I'm sorry I did find that Lucky is triple neg not positive but maybe you both could still trade information on where to find info?


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: HollyHopes
Date Posted: Jul 15 2007 at 8:34am
 How old are you  I am 51 y/o
2/   Where were your born and where have you lived Born in New Jersey; haved live all over the place here and abroad(having grown up in a military family); live in Los Angeles since 1991
3/   What is the specific name of your type of cancer Other than it being
       triple negative IDC
4/   What is your blood type B+
5/   Are you a drinker or a smoker I have never smoked.  I drink socially.
6/   Has anyone else in your family had Any kind of cancer Two maternal aunts with Breast CA; maternal uncle with bone CA; mother with colo-rectal CA
7/   How many pregnancies have you had 4 pregnancies - two live births
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox Measles and Chicken Pox
9/    Did you have any symptons of your breast cancer None - discovered on annual mammogram
10/  How was your cancer first discovered Routine annual mammo
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur N/A
12/  How often did you have mammograms Before you were diagnosed Annually since age 40
13/  Have you ever had a traumatic blow to your body and where was it No
14/  Have you ever had your hormones checked Prior to being diagnosed Yes
15/  Before you were diagnosed, what medications were you on Lotensin, Singulair, Pravachol, Celexa, Detrol
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed No
Etc.   


Posted By: fd411
Date Posted: Jul 15 2007 at 7:28pm
1/   How old are you 42
2/   Where were your born and where have you lived Born in New York City and have lived in Rochester, NY since 1986
3/   What is the specific name of your type of cancer Other than it being
       triple negative Invasive Ductal Carcinoma
4/   What is your blood type Don't know
5/   Are you a drinker or a smoker Neither
6/   Has anyone else in your family had Any kind of cancer Maternal grandmother had leukemia
7/   How many pregnancies have you had 0
8/   What childhood diseases have you had :  Measles, Chicken Pox
9/    Did you have any symptons of your breast cancer Nipple discharge and  palpable lump, lump in arm pit
10/  How was your cancer first discovered I felt a breast lump
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur Mets 4 months after completion of treatment to both lungs, chest wall, pleural lining, supraclavicular, neck nodes, and skin on bc breast.
12/  How often did you have mammograms Before you were diagnosed Didn't have any. I recently just turned 41 when I found my lump.
13/  Have you ever had a traumatic blow to your body and where was it No
14/  Have you ever had your hormones checked Prior to being diagnosed Yes
15/  Before you were diagnosed, what medications were you on Theophylline, Albuterol, Fluticasone
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed Yes
Etc.  


Posted By: Bethanne
Date Posted: Jul 18 2007 at 3:10am
1/   How old are you  39
2/   Where were your born and where have you lived  LI, NY my entire life, other than college in the Bronx and a semester in London
3/   What is the specific name of your type of cancer Other than it being
       triple negative  Poorly differentiated invasive ductal carcinoma, grade 3
4/   What is your blood type AB+
5/   Are you a drinker or a smoker drink moderately 2-4 glasses wine/week, smoked moderately from age 14 to 21
6/   Has anyone else in your family had Any kind of cancer paternal grandmother - breast cancer, paternal great-aunt - stomach cancer, paternal grandfather - colon cancer, maternal great-aunt - breast cancer, maternal great-uncle - bone cancer
7/   How many pregnancies have you had 2
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox Chicken Pox
9/    Did you have any symptons of your breast cancer lump
10/  How was your cancer first discovered felt lump in shower
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur no recurrence yet (5 years)
12/  How often did you have mammograms Before you were diagnosed never
13/  Have you ever had a traumatic blow to your body and where was it no
14/  Have you ever had your hormones checked Prior to being diagnosed no
15/  Before you were diagnosed, what medications were you on prozac and bc pills
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed when I was a teenager and had bronchitis/pneumonia for several years in a row


Posted By: victoria
Date Posted: Jul 18 2007 at 5:01pm

1/   How old are you 31

2/   Where were your born and where have you lived born in New Hampshire live in Massachusetts

3/   What is the specific name of your type of cancer Other than it being

       triple negative Infiltrating ductile cancer triple negative llymph negative 4 centimeters

4/   What is your blood type O positive

5/   Are you a drinker or a smoker ex smoker social drinker

6/   Has anyone else in your family had Any kind of cancer no

7/   How many pregnancies have you had none

8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox chicken pox

9/    Did you have any symptons of your breast cancer I did not feel right had a sick sense something was wrong

10/  How was your cancer first discovered found lump after shower

11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur finished chemo in March radiation in May

12/  How often did you have mammograms Before you were diagnosed never

13/  Have you ever had a traumatic blow to your body and where was it maybe from softball

14/  Have you ever had your hormones checked Prior to being diagnosed no

15/  Before you were diagnosed, what medications were you on birth control since 18 stopped in September when diagnosed

16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed no

Etc.   

 

A couple other questions that quickly come to mind:

 

1) Have you ever been on birth control?  For how long?  What kind? Orthocept (6 years), Loestrogern (1 year), Orthocycline (2 years)

2) If you have children, did you breastfeed?  For how long? No children

3) Do you have dense breast tissue? yes

4) Have you tested positive for BRCA1/2? Negative



Posted By: Jules
Date Posted: Jul 18 2007 at 6:42pm
 
1/   How old are you?  39, dx at age 38

2/   Where were your born and where have you lived ? UK all of life - born in Epping, Essex. Grew up in Hunstanton, Norfolk. Living in Cumbria for past 18 years.

3/   What is the specific name of your type of cancer Other than it being

       triple negative?  IDC, stage 1, grade 3

4/   What is your blood type? A positive

5/   Are you a drinker or a smoker?  Non-smoker, drinker at Christmas only! 

6/   Has anyone else in your family had Any kind of cancer? I have a personal history of Hodgkin's lymphoma Stage 2a at age 24. My Mum had Ovarian Cancer 14 years ago & now has Clear Cell Renal Carcinoma + mets. Maternal aunt died of Breast Cancer. Maternal grandfather died of Lung Cancer. Maternal Gt Grandmother died of Cervical Cancer. Paternal Grandfather had Prostate Cancer.

7/   How many pregnancies have you had?  5 - 1 miscarriage, 1 stillbirth, 3 live births

8/   What childhood diseases have you had?   Mumps, Measles, Chicken Pox?  Only chicken pox at age 27! 

9/    Did you have any symptons of your breast cancer?  None at all.

10/  How was your cancer first discovered?  On my annual mammogram - I'm on a programme of annual mammograms since 2004 because the mantle field radiotherapy for Hodgkin's Lymphoma I received in 1992 has increased my BC risk to between 1 in 3 and 1 in 7 before I reach 50. The risk goes up more after 50.

11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur?  Finished chemo in Feb2007 - no recurrence :-)

12/  How often did you have mammograms Before you were diagnosed?  Annually since age 36 - see qu.10

13/  Have you ever had a traumatic blow to your body and where was it? Fell down an iron fire escape, top to bottom, 7 years ago...  I had my son, Will, in my arms at the time (just a baby) so couldn't use my arms to stop us & so bunched up to protect him but he still got a bump on the forehead - he was checked at hospital & told the bump was thankfully very minor and he had no other injuries.   I got a massive blow to the hip, back & bum Embarrassed.  My hip's never been the same since...  still haunts me.

14/  Have you ever had your hormones checked Prior to being diagnosed? Only thyroid function tests, TSH levels & pituitary function. 

15/  Before you were diagnosed, what medications were you on? Levothyroxine, Cocodamol, Voltarol, Iron tablets, Citalopram, Salbutamol

16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed?   Regularly as a child for recurrent ear infections, but not as an adult.

 

 A couple other questions that quickly come to mind:

 

1) Have you ever been on birth control?  For how long?  What kind? Yes, for only about 4 years, over 20 years ago. Can't remember what.

2) If you have children, did you breastfeed?  For how long? Bottlefed only.

3) Do you have dense breast tissue? No, but cystic lumpiness

4) Have you tested positive for BRCA1/2? Not yet tested



-------------
IDC, Stage1, 17mm - clear nodes & margins, Grade3, 3neg, NED ! BC post-Hodgkin's rads to mantle field, family history of BC & OC


Posted By: liven42day
Date Posted: Jul 19 2007 at 9:43am
1/   How old are you  42
2/   Where were your born and where have you lived  Pennsylvania
3/   What is the specific name of your type of cancer Other than it being
       triple negative IDC
4/   What is your blood type O-
5/   Are you a drinker or a smoker I quit smoking 1 month ago (pack a day) drink 2-4 glasses of red wine a week
6/   Has anyone else in your family had Any kind of cancer Maternal grandmother IDC (12 year survivor now) ER PR +, maternal aunt DCIS (20 year survivor now) maternal great grandfather don't know specifics, all had double masectomies
7/   How many pregnancies have you had 4---2 live births
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox Measles and Chicken Pox
9/    Did you have any symptons of your breast cancer No
10/  How was your cancer first discovered I discovered my lump
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur
12/  How often did you have mammograms Before you were diagnosed 1 year almost to the day of finding the lump
13/  Have you ever had a traumatic blow to your body and where was it yes but cant remember them
14/  Have you ever had your hormones checked Prior to being diagnosed No
15/  Before you were diagnosed, what medications were you on Prempro 5 years ago, none in the last 4 years
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed No
Etc.   


-------------
Diagnosed 6/12/07 IDC Stage II, grade 3, trip negative, 7 negative nodes, 8 rounds of chemo 4xA/C done, 4x Taxol, almost done with chemo, then onto 35 rads


Posted By: cg---
Date Posted: Jul 20 2007 at 6:48pm
But......just think of all the exciting new therapies being tested.  I have to have believe someone would find this 15% group of  breast cancer exciting enough to want to make a breakthrough.
 
Look at what is going on in Texas.....phase II trials using ADVEXIN p53 tumor suppressor therapy and INGN immunotherapy combined with chemotherapy. 
 
Currently, in the United States they are doing trials with AVASTIN (angiogenesis inhibitor), for triple negative breast cancer.  It appears that Avastin combined with Taxol is effective in controlling the disease. (ECOG-2100) was the randomized trial.
 
ERBITUX, IRESSA, TARCEVA are all being looked at for our type of breast cancer.
 
 
 
 


Posted By: trip2
Date Posted: Jul 21 2007 at 7:39am
Hi CQ wow thanks for the information!  We've got to have hope that they'll get busy and come up with something.

-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: cg---
Date Posted: Jul 21 2007 at 9:07am
1.  53
2.  Born, raised and currently live in St. Catharines, Ontario, Canada
3.  Infiltrating ductal carcinoma, poorly differentiated, grade 3/3.
4.  Blood type A-.
5.  Nonsmoker, nondrinker.
6.  Father prostate, maternal aunts - brain, colon, lung; maternal uncle -
     melanoma, prostate.
7.  Two pregnancies.
8.  Mumps, measles, chickenpox.  I had Epstein-Barr in 1984.  I have had
     recurrent severe herpes simplex of the lips, interestingly seemed to
     come at the time of my menstrual cycles.
9.   Bilateral breast "cysts" for 10 years.
10. Lump in 1998 (cyst), fine needle aspirated - negative; lump in 2003 -
      same area, fine needle aspirated - negative; "cysts" same area
      2007 - infiltrating ductal carcinoma left breast 5 cm from nipple (same
      area since 1998) found on ultrasound-guided breast biopsy when the
      radiologist suggested "as a precautionary measure let's biopsy the
      cyst".
11. N/A.
12. Annual mammograms, ultrasounds, same gynecologist for 29 years. 
      Every mammogram report was normal; annual ultrasounds showed
      "cysts".
13. Have had bruised breast on same side as cancer.
14. Had hormones checked prior to diagnosis - still had not had
      menopause.  Estradiol was 250 when diagnosed.
15. On antihistamines/decongestants, Tylenol No. 3 and Naprosyn
      for herniated disk, degenerative disk disease.  Was taking vitamin
      E, D, B-Complex, C, selenium, evening primrose oil (this was for the
      severe breast pain I have had for years), Coenzyme Q10, calcium.
16. Have been on chronic antibiotics for chronic sinusitis, and failed
       root canal treatments at least 4-6 times a year.
17. Gave up coffee, tea, and everything else they suggested to relieve
      the breast pain.....did not happen until I had a mastectomy on
      May 30, 2007. 
 


Posted By: Vicki G
Date Posted: Jul 23 2007 at 1:58pm
1/   How old are you? 47, 45 at dx
2/   Where were your born and where have you lived? Born, raised and work in the San Fernando Valley - Los Angeles, Ca.
3/   What is the specific name of your type of cancer other than TN? IDC, Stage 2, 1.8cm, Left Breast, 1 of 10 lymph nodes positive.
4/   What is your blood type? AB Positive (had to look it up!)
5/   Are you a drinker or a smoker? Social drinker, Pack a day smoker before BC.
6/   Has anyone else in your family had Any kind of cancer? Mother died of colon cancer at age 38. Grandfather on Dad's side had same and died too. Do not know his age at death.
7/   How many pregnancies have you had? 4, 2 live births
8/   What childhood diseases have you had? Measles, Chicken Pox all childhood stuff except for Mumps.
9/    Did you have any symptons of your breast cancer? Intestinal problems, fatigue, weird periods, just felt bad, not myself.
10/ How was your cancer first discovered? Felt myself in bed.
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur? NO, currently NED
12/ How often did you have mammograms Before you were diagnosed? Yearly after age 40. Had one 10 months prior.
13/ Have you ever had a traumatic blow to your body and where was it? Yes on the bad breast. Cutting down a tree and a limb hit me near where I discovered the lump. That was about 6 months before I found it.
14/ Have you ever had your hormones checked Prior to being diagnosed? No
15/ Before you were diagnosed, what medications were you on? Xanax.
16/ Have you been prescribed antibiotics more than once in a year? No.

1) Have you ever been on birth control? Yes, from 23-30yrs. Then after my second child from 35-36. Then got tubes tied.
2) If you have children, did you breastfeed? For how long? Both kids for a year each.
3) Do you have dense breast tissue? Very.
4) Have you tested positive for BRCA1/2? Waiting on Insurance approval.
5) Exercise and diet? Don't exercise and never did but have an active job where I get up and down a lot. Diet, I eat whatever I want....always have.
6) Weight? Steady at 100lbs except during chemo, then down to 96. Now back at 100-103lbs thanks to menopause.

-------------
Lb Lumpectomy, IDC, Stage 2, Grade 3, 1+ node, 4 x A/C, 4 x Taxol, 33 x Rads. NED almost 4 yrs.
Los Angeles, Ca.


Posted By: PineHouse
Date Posted: Jul 26 2007 at 5:11pm
1/   How old are you  - Now 45, was 35 at first dx
2/   Where were your born and where have you lived - Born in Asia, lived in Asia 18yrs, then Oklahoma 4yrs, then moved to California & have been here 23yrs
3/   What is the specific name of your type of cancer Other than it being
       triple negative invasive ductal carcinoma
4/   What is your blood type don't recall
5/   Are you a drinker or a smoker neither
6/   Has anyone else in your family had Any kind of cancer - dad (prostate), paternal grandma (ovarian), BOTH paternal aunts.  NO cancer on mom's side
7/   How many pregnancies have you had  - 0
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox  - chicken pox
9/    Did you have any symptons of your breast cancer - no
10/  How was your cancer first discovered - self exam (felt lump)
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur mets to lungs/pleura
12/  How often did you have mammograms Before you were diagnosed - no mammo
13/  Have you ever had a traumatic blow to your body and where was it  - no
14/  Have you ever had your hormones checked Prior to being diagnosed - no 
15/  Before you were diagnosed, what medications were you on - none
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed - no
Etc.   
1) Have you ever been on birth control?  For how long?  What kind? - about 1 1/2 years 12 years ago, don't remember what kind
2) If you have children, did you breastfeed?  For how long? - n/a
3) Do you have dense breast tissue? - don't know
4) Have you tested positive for BRCA1/2?  - positive for brca1
5) Exercise and diet? - reasonable: exercise regularly (but never vigorous), don't eat much red meat & don't eat highly fatty food, but must admit that I don't drink enough water and I love to snack
6) weight? - was not overweight at dx, now have been about 10 lbs overweight for almost 10yrs


-------------
Stage IV lung-06/06 brain-12/08 BRCA1 TNBC
Avastin+Taxol,Carboplatin,PARP-Inhibitor,Navelbine+Xeloda,Avastin+Ixempra,Doxil+Cytoxan
Currently Abraxane+Gemzar (3/09)
http://pinehouse.wordpress.com/


Posted By: quiltjunky
Date Posted: Jul 26 2007 at 8:17pm
ClapStanding ovation to all you survivors!
 
1/   How old are you - 45 dx 42
2/   Where were your born and where have you lived - Rapid City, South Dakota.  I have lived in San Diego CA and Reno NV
3/   What is the specific name of your type of cancer Other than it being
       triple negative - Invasive Ductal Carcinoma - 2 cm right breast, no nodes involvement, grade 3, triple neg. 
4/   What is your blood type - after all of this, I don't know, can you believe it?
5/   Are you a drinker or a smoker - I smoked a pack a day for 20 years until 4 years ago.  I abused alcohol when I was younger and only socially drink once in a great while now.
6/   Has anyone else in your family had Any kind of cancer - my grandma on my mom's side died of lung cancer (didn't smoke) and my grandma on my dad's side died of pancreatic cancer.
7/   How many pregnancies have you had 4 pregnancies, 3 live births
8/   What childhood diseases have you had :    Chicken Pox
9/    Did you have any symptons of your breast cancer - I had no "symptoms" - I knew I didn't feel good for quite awhile before dx and I started losing weight fast without trying which got the doc's attention and they started checking me out.
10/  How was your cancer first discovered - yearly mammo
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur - NOTongue
12/  How often did you have mammograms Before you were diagnosed - I had 1 a year and a half before
13/  Have you ever had a traumatic blow to your body and where was it - several - on top of my head, my hip, my neck.
14/  Have you ever had your hormones checked Prior to being diagnosed - yes
15/  Before you were diagnosed, what medications were you on - Premarin, Prozac, Melotonin
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed sure, I was kinda a sickly kid and young adult
Etc.   
 
1) Have you ever been on birth control?  Yes For how long?  a couple of years What kind? - Orvo - something
2) If you have children, did you breastfeed? No For how long? 
3) Do you have dense breast tissue? - Did but don't anymore
4) Have you tested positive for BRCA1/2?  - No have not been tested
5) Exercise and diet? before dx didn't know what either was but I wasn't overweight until the past couple of years.  I ate too much fast food, grease all of the time and fat dripped from my veins.  Now I walk regularly, try to eat healthy and never fry anymore!
6) weight? - was not overweight at dx, now have been about 10 lbs overweight for 2 years


Posted By: Ronda
Date Posted: Jul 31 2007 at 1:55pm
1/   How old are you.  44
2/   Where were your born and where have you lived Colorado, all around the Northwest and California 
3/   What is the specific name of your type of cancer Other than it being
       triple negative. Invasive Ductal, Grade 3, Stage 2B, Sent. node negative +2 
4/   What is your blood type A Positive
5/   Are you a drinker or a smoker.  Not much at all, health food freak really.
6/   Has anyone else in your family had Any kind of cancer.  Paternal Aunt had BC at an early age.
7/   How many pregnancies have you had 2 Babies 2 Miscarriages
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox.  Measles and Chicken Pox
9/    Did you have any symptons of your breast cancer.  Fatigue and premonitions.
10/  How was your cancer first discovered.  I started looking for it a year before it showed up.  When I finally felt a lump I thought it was a cyst that had gotten bigger because an ultra sound show a small cyst in the area I kept looking in.  From a clear ultra sound (tiny cyst) to 2 1/2 cm in 6 mos.
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur. Nope
12/  How often did you have mammograms Before you were diagnosed. 2 in 1 year
13/  Have you ever had a traumatic blow to your body and where was it. No
14/  Have you ever had your hormones checked Prior to being diagnosed. No
15/  Before you were diagnosed, what medications were you on.  None
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed.  Don't take antibiotics
No birth control
Breast fed 2 babies 7 mos. each.
Haven't been gene tested yet.
Very dense breasts
Stopped excercising about 6 mos prior too DX
About 30-35 lbs. Overweight
 


Posted By: sstefano
Date Posted: Aug 01 2007 at 6:54pm
1/   How old are you - 42 dx at 32, 39
2/   Where were your born and where have you lived - Europe, live in Mass
3/   What is the specific name of your type of cancer Other than it being
       triple negative - Invasive Ductal Carcinoma - stage 3, stage 2 second time, grade 3, triple neg. 
4/   What is your blood type - 0 positive
5/   Are you a drinker or a smoker - I smoked a pack a day for 10 years until 10 years ago.  I drink 1-2 glasses red wine a day.
6/   Has anyone else in your family had Any kind of cancer - sister died of BC.
7/   How many pregnancies have you had 4 pregnancies, 2 live births
8/   What childhood diseases have you had :    Chicken Pox
9/    Did you have any symptons of your breast cancer - upset stomach for a few months.
10/  How was your cancer first discovered - myself, felt the lumps.
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur - local
12/  How often did you have mammograms Before you were diagnosed - once a year
13/  Have you ever had a traumatic blow to your body and where was it - no
14/  Have you ever had your hormones checked Prior to being diagnosed - no
15/  Before you were diagnosed, what medications were you on - none
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed no
Etc.   
 
1) Have you ever been on birth control?  no For how long?  What kind? 
2) If you have children, did you breastfeed? Yes For how long? 6 months each
3) Do you have dense breast tissue? - painfully dense
4) Have you tested positive for BRCA1/2?  - have not been tested
5) Exercise and diet? exersice and healthy diet after the diagnose  10 years ago
6) weight? - 125-130 lb



Posted By: Cylb
Date Posted: Aug 09 2007 at 4:45am
1/   How old are you    I am 54 years old.
 
2/   Where were you born and where have you lived   I was born in Ohio and live in Ohio  (I was in the military for awhile and moved around a lot in California, Massachusetts, and Hawaii)
 
3/   What is the specific name of your type of cancer Other than it being
       triple negative  Invasive ductal Carcinoma Stage 3/Grade 3
 
4/   What is your blood type    0+
 
5/   Are you a drinker or a smoker  No
 
6/   Has anyone else in your family had Any kind of cancer   My late Grandmother (on my Mother's side) had stomach cancer; my late Aunt (on my Mother's side) had stomach cancer; my late Father had mouth cancer (from smoking too much) and the beginnings of lung cancer. All died from the cancer.
 
7/   How many pregnancies have you had  2 pregnancies (1 a miscarriage and 1 a normal pregnancy)
 
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox, Whooping Cough which lasted over a year,
 
9/    Did you have any symptons of your breast cancer   No.  The only thing I really began to notice was that my left breast seemed unusually large.  I was 48 when I was diagnosed and I was going through the early signs of menopause though I was having normal periods.  I felt uncomfortable just under the left breast and chest area. I'd had a mammogram earlier in the year with no results.
 
10/  How was your cancer first discovered I was lying on my bed and my dog hit my left breast.  When I rubbed the area she hit, I discovered a lump about the size of my palm. When I went in for the biopsy it was discovered another lump was in the chest wall.  I had what was called a dumbbell tumor.  The tumor from the breast had broken through the chest wall and was still attached.
 
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur  No re-occurence
 
12/  How often did you have mammograms Before you were diagnosed
Every two years
 
13/  Have you ever had a traumatic blow to your body and where was it
As a matter of fact, yes, and it was in the area of the left breast.  I was hit with a golf ball when my brother was practicing
 
14/  Have you ever had your hormones checked Prior to being diagnosed
No
 
15/  Before you were diagnosed, what medications were you on  None
 
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed, Etc    No, I was always in pretty good health before all this had started.
 
1) Have you ever been on birth control?  NO For how long?  What kind? 
2) If you have children, did you breastfeed? NO For how long?
3) Do you have dense breast tissue? - VERY DENSE
4) Have you tested positive for BRCA1/2?  - NEVER TESTED
5) Exercise and diet? BEFORE I WAS DIAGNOSED I WAS WATCHING MY DIET AND EXERCISING
6) weight? - BEFORE MY DIAGNOSIS, I WAS AT 160 AND NOW I'M AT 190 WHICH IS NOT GOOD.

 
It was funny because even after I the lump was discovered, when the mammogram and ultrasound was redone, it showed up negative.  The doctor said it probably came up negative due to my having dense breasts. That's scary.
 
Cylb


Posted By: CarynRose
Date Posted: Aug 17 2007 at 4:19pm
1/   How old are you   47
2/   Where were your born and where have you lived . I was born in Newark, NJ and have lived in NJ all my life.
3/   What is the specific name of your type of cancer Other than it being
       triple negative.  Original:  IDC, rt. breast, Stage 2a, Grade 3, node negative.  Recurrence 4 years later to right lymph nodes and mets to lungs, poorly differentiated, grade 3.
4/   What is your blood type  AB+
5/   Are you a drinker or a smoker :  No
6/   Has anyone else in your family had Any kind of cancer:  Maternal Grandmother, Paternal aunt, maternal cousin; paternal cousins.
7/   How many pregnancies have you had 1
8/   What childhood diseases have you had :   Measles, Chicken Pox
9/    Did you have any symptons of your breast cancer  No, the first time. Yes, second time.
10/  How was your cancer first discovered  First: Mammogram  Second: symptoms and breast MRI
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur  Yes -- lymph nodes behind breast and mets to lungs
12/  How often did you have mammograms Before you were diagnosed  : every year before first cancer; every 6 months after
13/  Have you ever had a traumatic blow to your body and where was it:  no
14/  Have you ever had your hormones checked Prior to being diagnosed: yes... for fertility treatment
15/  Before you were diagnosed, what medications were you on: Prozac
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed:  Not that I know of
Etc.   


Posted By: josey2003
Date Posted: Aug 20 2007 at 11:36am
1/   How old are you - 59 now (54 at diagnosis)
2/   Where were your born and where have you lived – born in Bklyn, New York. I have lived in the Netherlands, Florida and now live in NC for the past 18 years
3/   What is the specific name of your type of cancer Other than it being triple negative – IDC–poorly differentiated cells. Grade 3
4/   What is your blood type – do not know
5/   Are you a drinker or a smoker – not now did both in the past
6/   Has anyone else in your family had Any kind of cancer – Uncle (lung cancer)
7/   How many pregnancies have you had - 0
8/   What childhood diseases have you had - Mumps, Measles, Chicken Pox
9/    Did you have any symptons of your breast cancer - no
10/ How was your cancer first discovered – by me
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur - no
12/ How often did you have mammograms Before you were diagnosed - every 2 years prior to 50 (every year after 50)
13/ Have you ever had a traumatic blow to your body and where was it - no
14/ Have you ever had your hormones checked Prior to being diagnosed - no
15/ Before you were diagnosed, what medications were you on – lipitor, paxil
16/ Have you been prescribed antibiotics more than once in a year Before your were diagnosed – I honestly do not remember I would think yes.

Let me add that I have extremely dense breast tissue. Therefore, hard to detect tumor on mammogram. I now have an MRI in addition to mammogram.

-------------
JoAnn


Posted By: theresa31
Date Posted: Aug 25 2007 at 6:20pm
1/   How old are you: 31
2/   Where were your born and where have you lived: Staten Island, Brooklyn, Boston, Maryland, Manhattan
3/   What is the specific name of your type of cancer Other than it being
       triple negative: DCIS & IDC of mixed features, poorly differntiated, Grad3, stage 1
4/   What is your blood type: A+
5/   Are you a drinker or a smoker: No
6/   Has anyone else in your family had Any kind of cancer: Maternal grandmother w/ ER+ BC in her 70s; Father w/ lymphoma at age 19
7/   How many pregnancies have you had: None
8/   What childhood diseases have you had : Chicken Pox
9/    Did you have any symptons of your breast cancer: soreness
10/ How was your cancer first discovered: discovered lump by accident while massaging sore breast
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur: dx only 3 mos ago, still in chemo
12/ How often did you have mammograms Before you were diagnosed: NEVER - dx w. ultrasound and FNA biopsy
13/ Have you ever had a traumatic blow to your body and where was it: 2 car accidents
14/ Have you ever had your hormones checked Prior to being diagnosed: No
15/ Before you were diagnosed, what medications were you on: None
16/ Have you been prescribed antibiotics more than once in a year Before your were diagnosed: None

BRCA 1&2-

Breast cancer at age 31 came as a total shock. To discover that I had the "bad kind of breast cancer" when this disease is othewise considered so treatable was just devastating. I am determined to fight this beast but I am terrified and sometimes I let the fear get the better of me. Science needs to pay MORE attention to the needs of young women, African Americans and Latinas.

-------------
Dx: June 4, 2007
Multifocal: 1.1, .3., .4
Grade 3, Stage 1
DD AC (done)
DD Taxol (begin Sept 6)


Posted By: JaniRD
Date Posted: Aug 27 2007 at 7:17am
1/   How old are you 55, 54 at dx
2/   Where were your born and where have you lived Born Nebraska, now live Colorado
3/   What is the specific name of your type of cancer Other than it being
       triple negative IDC
4/   What is your blood type
5/   Are you a drinker or a smoker Just quit smoking, rarely drink
6/   Has anyone else in your family had Any kind of cancer sister BC & ovarian cancer
7/   How many pregnancies have you had   1
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox & Mono
9/    Did you have any symptons of your breast cancer Fatigue
10/ How was your cancer first discovered   OB-GYN discovered lump at annual exam
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur   Still in primary treatment
12/ How often did you have mammograms Before you were diagnosed Every other year
13/ Have you ever had a traumatic blow to your body and where was it    Broke foot a couple of times
14/ Have you ever had your hormones checked Prior to being diagnosed
15/ Before you were diagnosed, what medications were you on antidepressants and blood pressure meds
16/ Have you been prescribed antibiotics more than once in a year Before your were diagnosed Antibiotics for frequent sinus infections and ear infections
1) Have you ever been on birth control? For about 15 years
2) If you have children, did you breastfeed? For how long? Yes, 6 months
3) Do you have dense breast tissue?   yes
4) Have you tested positive for BRCA1/2?   Not tested yet


Posted By: BeeCee
Date Posted: Aug 28 2007 at 7:17pm
Hi, all the replies have been very interesting to read. Here is my contibution:
1/   How old are you...........63, 62 at dx
2/   Where were your born and where have you lived........Texas, all my life 
3/   What is the specific name of your type of cancer Other than it being
       triple negative........IDC, Stage 1 Grade 3, no node involvement
4/   What is your blood type.......don't know
5/   Are you a drinker or a smoker......smoked for more than 30 years & quit 11 years ago, never a drinker
6/   Has anyone else in your family had Any kind of cancer..........skin cancer
7/   How many pregnancies have you had........1
8/   What childhood diseases have you had ..........measles, chicken pox, mononucleosis
9/    Did you have any symptons of your breast cancer.......no, had not been doing BSE (stupid, I know!) last mammo was 1 year before
10/  How was your cancer first discovered.....on my mammo
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur.......it's only been 1 year since my dx
12/  How often did you have mammograms Before you were diagnosed......every year
13/  Have you ever had a traumatic blow to your body and where was it.....no
14/  Have you ever had your hormones checked Prior to being diagnosed.....no
15/  Before you were diagnosed, what medications were you on.......vitamins, ibuprofen, cholesterol med
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed........no
 
 Extra info
17/ Before menopause, I had fibrocystic breasts. Had FNA of cysts in surgeons office numerous times. Thus, it was very difficult to do BSE and mostly I didn't even try, but always had yearly mammos.
18/ Was on birth control pills for 13 years, nonstop
19/ Tubal ligation at age 38  
20/ Something no one seems to have mentioned.....I have always (for 45 years) had dogs and would give them a bath weekly in flea shampoo plus using various poisons in the yard. I believe this to be a contributing factor in the development of cancer.
21/ Worked the evening shift  for 19 years. I read that shift workers are much more likely to develop cancer (not sure if just bc or all cancers) than people who work in the daytime and sleep at night.


-------------
Bonnie, age 63, Dx on 8/7/06 IDC stage 1 grade 3, triple neg, lumpectomy x2 of L breast, 8 nodes neg, 4 x AC & 4 x Taxotere, bone scan 2/07 (neg), 33 rads, Tx finished 5/7/07, Mammo 8/9/07 (normal)


Posted By: marathonmom
Date Posted: Aug 29 2007 at 5:14am
 Hello ladies,
 
Here is my bio:
 
1/   How old are you: 39
2/   Where were your born and where have you lived: born in Romania, raised in Montreal, canada
3/   What is the specific name of your type of cancer Other than it being
       triple negative: IDC, stage 2, grade 3, 0 nodes
4/   What is your blood type
5/   Are you a drinker or a smoker: no
6/   Has anyone else in your family had Any kind of cancer: paternal parents died of lung cancer, both smokers
7/   How many pregnancies have you had: 2
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox: all
9/    Did you have any symptons of your breast cancer: Fatigue for a few months prior to dx
10/  How was your cancer first discovered: myself
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur: only 6 months since end of tx
12/  How often did you have mammograms Before you were diagnosed: no
13/  Have you ever had a traumatic blow to your body and where was it: no
14/  Have you ever had your hormones checked Prior to being diagnosed: no
15/  Before you were diagnosed, what medications were you on: no
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed: yes for UTI. Took pill for 20 yrs (tri0phasil)
Did breast feed both kids. I exercise reg. and have a good diet
 
 
Etc.   


Posted By: Lisa
Date Posted: Sep 12 2007 at 12:52am
Hello - I am new to this forum but am pleased to give my info... despite ending treatment 3 years ago (and no recurrance yet thank goodness) I've only recently realised that I had triple negative BC in the first place. I've never heard it being referred to by that name by any  doctor. I can't tell you how great it is to have a name for it and to find people who have have/had the same as me.  All the people I have met with BC have gone on to Herceptin, Tamoxifen etc and it's hard to be the only one who is different.  Not any more!
 
1/   How old are you - 36
2/   Where were your born and where have you lived  - London & lived here all my life.
3/   What is the specific name of your type of cancer Other than it being
       triple negative - ductal BC
4/   What is your blood type - AB+
5/   Are you a drinker or a smoker - both!
6/   Has anyone else in your family had Any kind of cancer - grandfather (bowel) great aunt (lung), great aunt (breast)
7/   How many pregnancies have you had - 1
8/   What childhood diseases have you had :    Chicken Pox only
9/    Did you have any symptons of your breast cancer - no
10/  How was your cancer first discovered - I found a big lump
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur - no
12/  How often did you have mammograms Before you were diagnosed - never (too young)
13/  Have you ever had a traumatic blow to your body and where was it - no
14/  Have you ever had your hormones checked Prior to being diagnosed - no
15/  Before you were diagnosed, what medications were you on - thyroxine for underactive thyroid diagnosed 10 months prior to BC
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed - no
 
I breast fed my son briefly, exercised regularly before BC but not anymore, have a reasonable diet


Posted By: Brawleymom
Date Posted: Sep 21 2007 at 6:16pm
/   How old are you    44
2/   Where were your born and where have you lived  Michigan my whole life
3/   What is the specific name of your type of cancer Other than it being
       triple negative  adenoid cystic carcinoma of the breast
4/   What is your blood type  O+
5/   Are you a drinker or a smoker   no
6/   Has anyone else in your family had Any kind of cancer  two aunts with BC, gmother with stomach cancer
7/   How many pregnancies have you had  2
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox  Chicken POX
9/    Did you have any symptons of your breast cancer  painful lump
10/  How was your cancer first discovered  found the lump because it hurt.  Despite it being 6.1 cm, it did not show on mammo or ultrasound
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur--only 2 weeks post mastectomy so don't know yet. All PET/CT scans are clear at this time
12/  How often did you have mammograms Before you were diagnosed--once a year   I do have very dense breasts tho'
13/  Have you ever had a traumatic blow to your body and where was it--no
14/  Have you ever had your hormones checked Prior to being diagnosed--no,
15/  Before you were diagnosed, what medications were you on  lipitor, synthroid, lexapro, maxide
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed   no
 
 
The other interesting thing about me is that I had a benign schwanomma removed near my carotid arteries six years ago.  My ENT told me that although there is no relationship to the two tumors, my body does wierd things.  Lucky me.Confused 


Posted By: Teresa J
Date Posted: Sep 22 2007 at 5:59pm
1/   How old are you? 48
2/   Where were your born and where have you lived? Born, raised Seattle Pacific NW
3/   What is the specific name of your type of cancer other than TN? IDC, Stage 1, Poor Differential Grade 3/3; <1cm tumor, Left Breast, Clear nodes
4/   What is your blood type? O+ I think
5/   Are you a drinker or a smoker? NO LONGER - smoked few years as a teen. Drank glass of wine nightly
6/   Has anyone else in your family had Any kind of cancer? Mom MELANOMA also PANCREATIC (She survived both). Grandma BC at 85
7/   How many pregnancies have you had? 1
8/   What childhood diseases have you had? Measles, Mumps, Chicken Pox
9/    Did you have any symptons of your breast cancer? none
10/ How was your cancer first discovered? Found it myself while in bed
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur? NO - just completed treatment 8/31/07
12/ How often did you have mammograms Before you were diagnosed? Yearly since age 40
13/ Have you ever had a traumatic blow to your body and where was it? no
14/ Have you ever had your hormones checked Prior to being diagnosed? Yes, was premenopausal
15/ Before you were diagnosed, what medications were you on? none
16/ Have you been prescribed antibiotics more than once in a year? No.

1) Have you ever been on birth control? Yes, from 18-25 yrs. old
2) If you have children, did you breastfeed? For how long? Yes, breastfed 4 mos.
3) Do you have dense breast tissue? No
4) Have you tested positive for BRCA1/2? WAITING FOR RESULTS - just went in 9/20/07 for blood draw
5) Exercise and diet? Before BC - good diet, minimal exercise. NOW EXCELLENT Veggie diet, no wine and work out 3x week.
6) Weight? 135 in high school, 145 when diagnosed, now 130


Posted By: paula
Date Posted: Sep 23 2007 at 7:11pm
1/   How old are you? 47 diagnosed 44
2/   Where were your born and where have you lived? Born, raised Regina, Saskatchewan Canada
3/   What is the specific name of your type of cancer other than TN? IDC (non specific), Stage 1, Poor Differential Grade 3/3; 1.75 cm tumor, Left Breast, 1 node (microscopic)
4/   What is your blood type? O- (I think)
5/   Are you a drinker or a smoker? still smoke social drinker.
6/   Has anyone else in your family had Any kind of cancer? Grandmother Kidney Cancer, Mom - Uteriun & Cervical Cancer, Father - Esophegeal Cancer, Great Aunt - BC
7/   How many pregnancies have you had? 2
8/   What childhood diseases have you had? Mumps, Chicken Pox
9/    Did you have any symptons of your breast cancer? none
10/ How was your cancer first discovered? Mamogram (nonpapable mass)
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur? NO
12/ How often did you have mammograms Before you were diagnosed? Yearly since age 34
13/ Have you ever had a traumatic blow to your body and where was it? yes, head
14/ Have you ever had your hormones checked Prior to being diagnosed? No
15/ Before you were diagnosed, what medications were you on? anti-depressants, high blood pressure, sleeping pills.
16/ Have you been prescribed antibiotics more than once in a year? yes

1) Have you ever been on birth control? Yes, from 18-24 25-26, 27-34 yrs. old. Hormone Therapy 34-43
2) If you have children, did you breastfeed? For how long? Yes, breastfed 1 mos.
3) Do you have dense breast tissue? Yes
4) Have you tested positive for BRCA1/2? Neg for both
5) Exercise and diet? balanced diet, walked 3 x wk
6) Weight? 135 high school, 230 diag, now 213


Posted By: Jessie
Date Posted: Oct 04 2007 at 11:54am
1/   How old are you   62 at dx
2/   Where were your born and where have you lived Born in Alabama, also lived in Califirnia, Georgia, Tennessee, and now North Carolina
3/   What is the specific name of your type of cancer Other than it being
       triple negative  Invasive Ductal Carcinoma
4/   What is your blood type O+
5/   Are you a drinker or a smoker no- neither
6/   Has anyone else in your family had Any kind of cancer  maternal aunt and cousin had breast cancer 
7/   How many pregnancies have you had  1
8/   What childhood diseases have you had :   Chicken pox, Mumps, Measles
9/    Did you have any symptons of your breast cancer  no
10/  How was your cancer first discovered  mammogram annual
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur  NO, currently NED
12/  How often did you have mammograms Before you were diagnosed  yearly
13/  Have you ever had a traumatic blow to your body and where was it  No, had hysterectomy for endometriosis
14/  Have you ever had your hormones checked Prior to being diagnosed  No
15/  Before you were diagnosed, what medications were you on  Blood control and Cholestral meds, also Synthroid and Zantac for reflux
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed  yes, for occasional bladder infections
Etc.   
1) Have you ever been on birth control?  For how long?  What kind?  28 years, none since 1983.
2) If you have children, did you breastfeed?  For how long?  no
3) Do you have dense breast tissue?  yes
4) Have you tested positive for BRCA1/2?  not tested 
5) Exercise and diet? generally good diet,  dont exercise regularly.
6) weight?  Used to be skinny as a rail, now about 25 lbs overweight




Posted By: PrinV
Date Posted: Oct 06 2007 at 6:28am
1/   How old are you - 34 now, 33 at dx
2/   Where were your born and where have you lived - North Carolina
3/   What is the specific name of your type of cancer Other than it being
       triple negative - Invasive Ductal Carcinoma - stage IIB, Grade 3, 1+/14 nodes. 
4/   What is your blood type - 0 positive
5/   Are you a drinker or a smoker - non smoker; occasional drinker.
6/   Has anyone else in your family had Any kind of cancer - grandmother - lung cancer
7/   How many pregnancies have you had 5 pregnancies, 1 live birth
8/   What childhood diseases have you had :    Chicken Pox
9/    Did you have any symptons of your breast cancer - none
10/  How was your cancer first discovered - BSE.
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur - no
12/  How often did you have mammograms Before you were diagnosed - never - too young
13/  Have you ever had a traumatic blow to your body and where was it - no
14/  Have you ever had your hormones checked Prior to being diagnosed - no
15/  Before you were diagnosed, what medications were you on - none
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed no
Etc.   
 
1) Have you ever been on birth control?  yes For how long?  on and off for 15 years What kind? 
2) If you have children, did you breastfeed? Yes For how long? 3 months
3) Do you have dense breast tissue? - yes
4) Have you tested positive for BRCA1/2?  - yes, BRCA1+ (from father passed through male side, that's why no family history
5) Exercise and diet? exersice and healthy diet before and after dx
6) weight? - 120 at dx, 113 now


Posted By: kirby
Date Posted: Oct 09 2007 at 9:44am

1. 45 at dx......52 now

2. California, always

3.IDC 2 cm. stage 1, grade 3

4. O +

5.social drinker, generally wine, maybe a couple glasses a month. Occasional smoker, depending on stress. a pack or less a week. Sometimes months and years w/o.

6.my mother passed away from ovarian 2 weeks before my dx.
7.3 pregnacies, only 2 to term
8.All the usual childhood diseases, those listed
9.no symptoms
10. felt lump while showering
11. no reoccurance [it has been 7 years !]
12.I had had a couple. It had been 18 months prior from when I found my lump
13.no blows
14.no, was still having regular periods
15.none, extremely healthy other than stress
16. no antibiotics
 
1. yes I took BC in my early 20 for 5 years at the most
2. Yes, I breastfed, 13 months the first time, 16 months the second
3. yes, dense breasts
4. Negative for BRCA 1 & 2
5. I eat healthy although overweight and excersize regularly and have for 15 years before dx. I run 5 days a week and do other cardio and weights, time allowing
16. 30 lbs overweight


Posted By: dixiegal
Date Posted: Oct 14 2007 at 12:19pm
 
I am new to this site today -- and thought your survey questions were insightful and responses would be useful to someone looking at the entire triple negative group of responders...
1/   How old are you --- 55 yrs old
2/   Where were you born and where have you lived  -- born in Minnesota and have lived here most of my life
3/   What is the specific name of your type of cancer Other than it being
       triple negative -- invasive ductal carcinoma
4/   What is your blood type  -- A
5/   Are you a drinker or a smoker  -- only occasional drinker
6/   Has anyone else in your family had Any kind of cancer -- yes, one of my 4 sisters currently has stage 4 renal cancer on her hip bone and in lungs
7/   How many pregnancies have you had  -- none
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox   -- all of these listed
9/    Did you have any symptons of your breast cancer  --NO
10/  How was your cancer first discovered -- mammogram on 2/14/07
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur  -- just diagnosed on March 8, 07, still in treatment
12/  How often did you have mammograms Before you were diagnosed-- annually until year 2000; then I didn't have another one till Feb 07
13/  Have you ever had a traumatic blow to your body and where was it  -- NO
14/  Have you ever had your hormones checked Prior to being diagnosed -- NO
15/  Before you were diagnosed, what medications were you on  -- BP medications only since 1 month before diagnosis
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed  --- no
 
-- RE: Birth control pills -- took them from age 21 thru 35 with a few breaks in-between.  Stopped taking them after severe headache side effects at age 36.
-- RE: breast tissue -- do have dense tissue.
-- Family history--my grandmothers, mother and 4 other sisters have not had any breast cancer diagnosis.
Etc.   


Posted By: Syppie
Date Posted: Oct 15 2007 at 5:59am
Hello
I am new to the site -- here are my stats

1. 43 at dx......44 now

2. I've lived in Ohio, Virginia, Florida and now in North Carolina

3.  Stage IIIC; Invasive Lobular;19/19 positive nodes; grade 3; Extensive Lympho Vascular Invasion; Multiple tumors

4. not sure

5.social drinker 

6. Grandmother passed away with colon cancer; Mother has bc
 
7.  3 pregnacies, only 1 to term
 
8. Mumps, measles, chicken pox
 
9. no symptoms of BC did mammograms yearly
 
10.  awoke at 2:00 AM with hand on lump in left breast
 
11. Just finished treatment in August
 
12.Yearly
 
13. not that I recall
 
14.no, was still having regular periods
 
15.none, extremely healthy other than stress
 
16. no antibiotics
 
17. Never took birth control pills or hormones
 
18. Yes, I breastfed, 6 months
 
19  Dense breast tissue
 
20. Negative for BRCA 1 & 2
 
21. I eat pretty healthy have a bit of a sweet tooth but not out of control
Not overweight although gained weight from chemo - had alot of water retention during chemo and I can't get rid of all of it 


Posted By: Liliana
Date Posted: Oct 15 2007 at 6:38pm
1/   How old are you  42
2/   Where were your born and where have you lived Born in South America,  Lived in Chicago, then Houston
3/   What is the specific name of your type of cancer Other than it being
       triple negative Stage 1, DCIS 3cm, Invasive 1.9cm
4/   What is your blood type  A+
5/   Are you a drinker or a smoker  Occasional drinker, never smoker
6/   Has anyone else in your family had Any kind of cancer  Father stomach cancer, Paternal aunts 3 out of 4 with breast cancer--2 of the three died--I believe it was because it was too late in the diagnosis
7/   How many pregnancies have you had  2
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox  chicken pox, bronchitis
9/    Did you have any symptons of your breast cancer  Yes, sensations pulsing or "electrical" in around the tumor area of left breast a few months before tumor was taken out, sensations have decreased down to zero after lumpectomy and 2nd AC chemo combined.
10/  How was your cancer first discovered  self examined
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur  No, this was my first diagnosis
12/  How often did you have mammograms Before you were diagnosed Yearly
13/  Have you ever had a traumatic blow to your body and where was it  I don't think so
14/  Have you ever had your hormones checked Prior to being diagnosed  No how are they checked?
15/  Before you were diagnosed, what medications were you on  only Nexium for stomach ulcers, and Exedrin for tension headaches during the cylces--sometimes similar to migraines
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed Yes
 
Birth control pills L'Ovral for about 9 years on and off
I had 2 children, now 11 and 10 years of age
breast fed both up till 6 months
Positive for BRCA 1
 


Posted By: mckell1234
Date Posted: Oct 25 2007 at 6:01am
1/   How old are you  34,33 at dx
2/   Where were your born and where have you lived louisville, ky.
3/   What is the specific name of your type of cancer Other than it being
       triple negative Invasive Ductal Carcinoma
4/   What is your blood type A-, RH-
5/   Are you a drinker or a smoker Was both, rarely drink anymore
6/   Has anyone else in your family had Any kind of cancer Yes, father had lung cancer.
7/   How many pregnancies have you had 3
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox Chicken Pox
9/    Did you have any symptons of your breast cancer Lump and tired, mostly I think I was tired from having 3 children.
10/  How was your cancer first discovered Found it myself while breastfeeding 2 week old.
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur N/A but have been NED for over 1 yr.
12/  How often did you have mammograms Before you were diagnosed Never, not old enough (by their terms)
13/  Have you ever had a traumatic blow to your body and where was it  Not that I remember
14/  Have you ever had your hormones checked Prior to being diagnosed No
15/  Before you were diagnosed, what medications were you on Birth control on and off for 15 yrs. Depo for 1.5 yrs.
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed No
  
1) Have you ever been on birth control?  For how long?  What kind? See question 15 I think one was Orthotricyclen.
2) If you have children, did you breastfeed?  For how long?Only breastfed for 6 weeks, last child. 
3) Do you have dense breast tissue? Yes, my ob/gyn also said I had fibrocystic breast tissue about 8 years ago. 
4) Have you tested positive for BRCA1/2? Yes, negative.


-------------
Age: 33yrs. @ diagnosis.
DX 7/06 Stage II IDC 2 cm,1+/20 nodes BRCA-. 6 TAC finished 12/06.


Posted By: elsad
Date Posted: Oct 28 2007 at 8:07am
1/   How old are you-46, 45 when diagnosed.
2/   Where were your born and where have you lived -Gwinnett County Georgia
3/   What is the specific name of your type of cancer Other than it being
       triple negative-Infiltrating Ductal Carcinoma Grade three tumor with two positive lymph nodes
4/   What is your blood type-B+
5/   Are you a drinker or a smoker-Do smoke
6/   Has anyone else in your family had Any kind of cancer-Lung, Brain
7/   How many pregnancies have you had-1
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox-All of the above
9/    Did you have any symptons of your breast cancer-Just found a huge knot that didin't hurt.
10/  How was your cancer first discovered-I found it.
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur-Only been a year.
12/  How often did you have mammograms Before you were diagnosed-once a year sometimes twice a year for fibrocystic disease.
13/  Have you ever had a traumatic blow to your body and where was it-Yes in the chest
14/  Have you ever had your hormones checked Prior to being diagnosed-Yes
15/  Before you were diagnosed, what medications were you on-Atenenol, cymbalta
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed-No
 


Posted By: jenngo
Date Posted: Nov 04 2007 at 9:16am
 
Hi girls -
I am very new here and have found the survey very interesting.  I am amazed at the ages of everyone here - I hope it's okay if I add another dimension to the survey that I have oftened wondered about in my own diagnosis.  I am a psychotherapist and noticed in reading the responses how many of us were on antidepressants when diagnosed.  Since the ages many of us are when we were diagnosed would put us in the catagory of married with small children, that being an unusually stressful time of life, I wondered if (as in my own life) there were marital probs, anger and resentment, depression, or any other psychological traumas that may have been present two or so years prior to diagnosis.  All of those were definately present for me, two young children, marital tension and stress, angry grudges being held inside of me towards family members, ect...
Since I cannot take anything for my trip neg state, I also along with vitamins, veggies and excercise,  focus a lot on my emotional well-being.  I think anger and resentment suppress the immune system and I try to be very aware of my stress level and my emotional state.  I would be so interested to hear about this from people if they are comfortable sharing this - thank you!
 
One other question, if you took adriamycin are you in menopause or have you developed heart issues?  I am in menopause and do now have heart issues.
Okay - Here's my info -
 
 
1/   How old are you? 42, now 39 at dx.
2/   Where were your born and where have you lived?Born NYC, raised in Bergen Cty NJ, lived in Central Jersey past 10 years.  College in Allentown PA
3/   What is the specific name of your type of cancer other than TN?  75% IDC,25% DCIS , Stage 3, Poor Differential Grade 34 cm tumor, Left Breast, 20 positve nodes of 26
4/   What is your blood type? O-
5/   Are you a drinker or a smoker? Drank and smoked in HS and college.  Smoked a lot of pot in college, nothing since age 20 except for very occasional drinking.
6/   Has anyone else in your family had Any kind of cancer? Yes - On Maternal side: GM died of BC age 80, Aunt Died BC age 70, 2nd Aunt Died of OVarian age 75, she was BRCA1 - her two daughters, one diag BC age 51 - ER+, on Tamoxifan, recurrance after 4 1/2 years, died at age 57 mets to bone, and brain.  Her other daughter, BRCA1 - now in tx for colon cancer.  MY mother - BC 1 year after me, she is Triple Neg as well - she and I are bother BRCA NEG.  Paternal GM - luekemia
7/   How many pregnancies have you had? 3 preg, two live births
8/   What childhood diseases have you had?  Chicken Pox
9/    Did you have any symptons of your breast cancer? I was diagnosed with lupus 6 months prior to my BC diagnosis,  I was feeling exhausted with severe pains in my hands and wrists
10/ How was your cancer first discovered? Had pain, reached over in the shower and found two hard palpaple lumps, one in breast and one in armpit
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur? NO - diagnosed 9/10/04 -three years clean this past Sept!!
12/ How often did you have mammograms Before you were diagnosed? Yearly since age 40
13/ Have you ever had a traumatic blow to your body and where was it? Flipped over the handle bars on my bike in 8th grade, broke my wrist
14/ Have you ever had your hormones checked Prior to being diagnosed? No
15/ Before you were diagnosed, what medications were you on? I had started on Synthroid three weeks prior to finding the lumps.  This was because for about 7 yrs I had nodules on my thyroid.  About 7 months before dx I had a biopsy on my thyroid and was still getting over the fear that I had thyroid cancer.  I also was and still am on Ultracet for the pain in my joints that I thought was from the lupus but now think a lot was from the chemo.
16/ Have you been prescribed antibiotics more than once in a year?Probably because the flu season before my then 3 and 6 yr old had strep and every other cold ect that I am sure I did.
1) Have you ever been on birth control? Yes, from 19- 27 ortho-novom, triphasil
2) If you have children, did you breastfeed? For how long? Yes, breastfed 13 months and 10 months
3) Do you have dense breast tissue?YES
4) Have you tested positive for BRCA1/2 negative
5) Exercise and diet? Before BC - poor diet always about 130 after kids about 160, minimal exercise. NOW EXCELLENT Veggie diet, occasional wine not much excercise. Lost all the weight due to chemo making me not want to eat, have been 130 past two years since tx ended.

 

Jenn


 


Posted By: trip2
Date Posted: Nov 05 2007 at 6:31am
Welcome Jenn,
 
I was diagnosed a couple of months ago with congestive heart failure and feel like Adriamyacin is to blame but that is just my feelings.  I took it in 03.
 
I'm one of those who was older, 56, the first time I was diagnosed so I didn't go thru menopause but my 39 yr old daughter was diagnosed earlier this year and just finished her treatments.  About a month ago she had a hysterectomy and is having problems with hot flashes.
 
But that doesn't really answer your question.  I do remember about your age I did go thru pre-menopausal experiences.
 
As you mentioned there are alot of younger members that have been diagnosed on our board so hopefully they'll come along soon and answer your question specifically.
 
You might go to the Talk board and start a new topic so they'll be sure and see your question. Smile
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: kirby
Date Posted: Nov 05 2007 at 8:26pm
Jenn,
I had AC in the spring of 2001. It definitely put me in menopause which I  looked upon as  being a bonus  for going thru treatment.
 
 I have not had any heart problems. Even  at that time they would not do more than 4 rounds because more than that could be detrimental to the heart. I did have a stress test, fairly soon after, which came out perfect. The problem was eventually dx as esophogeal spasms which I had never had prior.
 
Kirby


Posted By: 3neg
Date Posted: Nov 07 2007 at 12:15am
1/   How old are you 52
 
2/   Where were your born and where have you lived born in Chicago Illinois and have been living in Israel for over 20 years.
 
3/   What is the specific name of your type of cancer Other than it being
       triple negative Invasive Ductal
 
4/   What is your blood type AB+
5/   Are you a drinker or a smoker have never smoked but I drink a glass or two of white wine a week. does that count?
6/   Has anyone else in your family had Any kind of cancer no
 
7/   How many pregnancies have you had 3
8/   What childhood diseases have you had :  chicken pox, measles
 
9/    Did you have any symptons of your breast cancer had a lump I felt
 
10/  How was your cancer first discovered I found the lump
 
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur no evidence of cancer recurring
 
12/  How often did you have mammograms Before you were diagnosed had ultra sound at age 45 and mammogram at age 48 or 9 and then at 50 when I was diagnosed
 
13/  Have you ever had a traumatic blow to your body and where was it  no
 
14/  Have you ever had your hormones checked Prior to being diagnosed no
15/  Before you were diagnosed, what medications were you on aspirin and Buticort for asthma
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed no
Etc.  


Posted By: shellieh51
Date Posted: Nov 10 2007 at 2:23am
/   How old are you - 55 at dx
2/   Where were your born and where have you lived Hastings NE - Denver CO for at least 30 yrs., minimally time in Sparks NV and Colo Springs as an army air corp brat
3/   What is the specific name of your type of cancer Other than it being
       triple negative IDC
4/   What is your blood type
5/   Are you a drinker or a smoker No, former smoker.  Drinks 2-3 month
6/   Has anyone else in your family had Any kind of cancer YES
7/   How many pregnancies have you had 3
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox  Chicken Pox
9/    Did you have any symptons of your breast cancer Slight pain
10/  How was your cancer first discovered I found tumor
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur No - only one year out
12/  How often did you have mammograms Before you were diagnosed Annually since age 24 when first B9 tumor was removed - same breast
13/  Have you ever had a traumatic blow to your body and where was it No
14/  Have you ever had your hormones checked Prior to being diagnosed Is this to see if I was menopausal?  If so, yes and I was pre
15/  Before you were diagnosed, what medications were you on Prozac, Triazalom for sleeping
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed Good question.  I think so
Etc.   


-------------
dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 -


Posted By: Suzanne
Date Posted: Nov 10 2007 at 4:08pm
1/   How old are you? 57, 56 at dx
 
2/   Where were your born and where have you lived? born and raised in Austin, Texas, went to college in Colorado, and have lived in Kansas, San Antonio, Washington D.C. suburb, and San Francisco Bay area
 
3/   What is the specific name of your type of cancer other than it being
       triple negative? IDC, 1.56 cm, stage 1
 
4/   What is your blood type? A+
5/   Are you a drinker or a smoker? have never smoked and used to drink a glass or two of wine per month 
6/   Has anyone else in your family had any kind of cancer? no
 
7/   How many pregnancies have you had? 1
8/   What childhood diseases have you had?  chicken pox, measles
 
9/    Did you have any symptons of your breast cancer? no
 
10/  How was your cancer first discovered? annual mammogram
 
11/  Have you had a re-occurence in the past 2 years and if so, where did it re-occur? no evidence of cancer recurring; 10 months since diagnosis
 
12/  How often did you have mammograms before you were diagnosed?  almost yearly since 2000
 
13/  Have you ever had a traumatic blow to your body and where was it?  no
 
14/  Have you ever had your hormones checked prior to being diagnosed? no
15/  Before you were diagnosed, what medications were you on? none, other than calcium and multi-vitamins
16/  Have you been prescribed antibiotics more than once in a year before you were diagnosed? yes
17/ Have you ever been on birth control?  For how long?  What kind? yes, about twelve years, several types
18/ If you have children, did you breastfeed?  For how long? yes, about 1 yr.
19/ Do you have dense breast tissue? no
20/ Have you tested positive for BRCA1/2? tested but negative 

21/ Exercise and diet? I exercise (aerobics and light weights) about six hours per week.  My diet is good - little meat, no fast foods, and no transfats.

22/ Weight?  in average range for my height (5' 10 1/2")


-------------
1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07


Posted By: Indi
Date Posted: Nov 16 2007 at 12:36am
I don't think age, size, grade, stage, childbirth, location or anythings has a thing to do with triple negative hormone breast cancer.  I think it has to do with environment, defective receptors, and the unwilling research given to this odd form of cancer. 
 
If I believed in this poll, I would take the survey, but I've taken zillions of worthless surveys and they accound for nothing.  The fact is, scienctist and physicians are taking the easy way out by using these rediculous polls to avoid the reality of what the possible genetic, environmental, and ineffective treatments to which we are subjected. 
 
I don't think they care.  I don't think anyone cares.  The only ones who care seem to be those who love the patient suffering from this deviation of breast cancer.  Give us some anwers, give us some truth.  I've seen enough polls; we need research, brilliance and a serious, honest approach to the reality of what triple negative hormone receptor breast cancer's origins and treatments will once day bring about a sensible and forthright answer.
 
Sorry, but I am tired of all this nonsical trasj which we all seem to wade thogh.
 
Sorry for my nefgatife attude, but I hae  ekpifj/ 
 
Omdo


Posted By: AnitaC
Date Posted: Nov 16 2007 at 6:10pm
1/   How old are you  60, diagnosed at age 58
2/   Where were your born and where have you lived  born Rochester, NY lived in Boston Ma  5yrs. and Orlando Fl
3/   What is the specific name of your type of cancer Other than it being
       triple negative  Poorly differenciated ductal carcinoma, right breast no nodes involved  Stage 1   
4/   What is your blood type O Positive
5/   Are you a drinker or a smoker  Wine or mixed drink occasionally  never a smoker
6/   Has anyone else in your family had Any kind of cancer  Fraternal Grandmother breast cancer,  Maternal Aunt  breast cancer, mother colon cancer, both grandfathers cancer, maternal uncle lukemeia
7/   How many pregnancies have you had  3  one miscarriage two children
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox  Chicken Pox, Measles, Scarlet Fever
9/    Did you have any symptons of your breast cancer calcifications 3 yrs prior to Breast Cancer
10/  How was your cancer first discovered     I found lump between mamograms
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur   No
12/  How often did  you have mammograms Before you were diagnosed Every year
13/  Have you ever had a traumatic blow to your body and where was itNo
14/  Have you ever had your hormones checked Prior to being diagnosedNo
15/  Before you were diagnosed, what medications were you on  Levoxyl, Zyrtec, Nexium
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed  Yes
 I wanted to add:  Hodgkins Disease at age 32 stage 2  6 wks radiation
 


Posted By: AnitaC
Date Posted: Nov 16 2007 at 6:11pm
1/   How old are you  60, diagnosed at age 58
2/   Where were your born and where have you lived  born Rochester, NY lived in Boston Ma  5yrs. and Orlando Fl
3/   What is the specific name of your type of cancer Other than it being
       triple negative  Poorly differenciated ductal carcinoma, right breast no nodes involved  Stage 1   
4/   What is your blood type O Positive
5/   Are you a drinker or a smoker  Wine or mixed drink occasionally  never a smoker
6/   Has anyone else in your family had Any kind of cancer  Fraternal Grandmother breast cancer,  Maternal Aunt  breast cancer, mother colon cancer, both grandfathers cancer, maternal uncle lukemeia
7/   How many pregnancies have you had  3  one miscarriage two children
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox  Chicken Pox, Measles, Scarlet Fever
9/    Did you have any symptons of your breast cancer calcifications 3 yrs prior to Breast Cancer
10/  How was your cancer first discovered     I found lump between mamograms
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur   No
12/  How often did  you have mammograms Before you were diagnosed Every year
13/  Have you ever had a traumatic blow to your body and where was itNo
14/  Have you ever had your hormones checked Prior to being diagnosedNo
15/  Before you were diagnosed, what medications were you on  Levoxyl, Zyrtec, Nexium
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed  Yes
 I wanted to add:  Hodgkins Disease at age 32 stage 2  6 wks radiation
 


Posted By: Broni
Date Posted: Nov 20 2007 at 7:41am
1/   How old are you 45
 
2/   Where were your born and where have you lived -Melbourne Australia, lived in every state of Australia exceptTasmania and Western Australia
 
3/   What is the specific name of your type of cancer Other than it being
       triple negative- IDC
 
4/   What is your blood type - B Neg
 
5/   Are you a drinker or a smoker -  moderate drinker, smoked one pack of cigarettes in my lifetime
 
6/   Has anyone else in your family had Any kind of cancer - father has multiple myeloma and prostate cancer, aunt and uncle with bowel cancer, uncle with prostate cancer, uncle with bone cancer (all paternal side)
 
7/   How many pregnancies have you had - 3 pregnancies, 1 miscarriage, 2 live births
 
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox - measles, german measles, chicken pox,
 
9/    Did you have any symptons of your breast cancer - lump in breast which was not picked as suspicious at first mam/us - reason given as dense breast tissue, lots of women have it, so don't worry
 
10/  How was your cancer first discovered - second mam/us 2 years after first one - had light pain and tenderness under the arm. Core biopsy and fnd confirmed diagnosis
 
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur - only diagnosed Sept 07
 
12/  How often did you have mammograms Before you were diagnosed- only my second one
 
13/  Have you ever had a traumatic blow to your body and where was it - yes - got the breast with lump whacked by a car door being opened, probably 4 months before 2nd mam.
 
14/  Have you ever had your hormones checked Prior to being diagnosed - no 
 
15/  Before you were diagnosed, what medications were you on - nil
 
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed - no was always healthy!!


Posted By: Jane
Date Posted: Nov 25 2007 at 2:36pm

1/   How old are you? 37 (33 at diagnosis)
2/   Where were your born and where have you lived? New Zealand
3/   What is the specific name of your type of cancer Other than it being
       triple negative? Invasive Ductal
4/   What is your blood type? 0
5/   Are you a drinker or a smoker? smoked 10 years ago, social drinker
6/   Has anyone else in your family had Any kind of cancer? No
7/   How many pregnancies have you had? 3
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox? Chicken pox, glandula fever
9/    Did you have any symptons of your breast cancer? lump
10/ How was your cancer first discovered? Clear Mammo,ultrasound and fna, core biopsy confirmed
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur? no
12/ How often did you have mammograms Before you were diagnosed? too young (33)
13/ Have you ever had a traumatic blow to your body and where was it? no
14/ Have you ever had your hormones checked Prior to being diagnosed? yes
15/ Before you were diagnosed, what medications were you on? birth control pill
16/ Have you been prescribed antibiotics more than once in a year Before your were diagnosed? yes
dddd


Posted By: Arnica
Date Posted: Nov 27 2007 at 3:11am
1/   How old are you
62
2/   Where were your born and where have you lived
rural Colorado, Denver near Rocky Moutain Arsenal for 10 years when they were actively storing chemical weapons (exh has prostate cancer) / back to rural Colorado 
3/   What is the specific name of your type of cancer Other than it being
       triple negative - IDC
4/   What is your blood type/ not sure
5/   Are you a drinker or a smoker
quit drinking 20 years ago - quit smoking 7 years ago
6/   Has anyone else in your family had Any kind of cancer
no immediate family
7/   How many pregnancies have you had - 2
8/   What childhood diseases have you had :  
Mumps, Measles, Chicken Pox - so did practically everyone my age in the days before vaccinations! :)
9/    Did you have any symptons of your breast cancer -
Fatigue, general feeling of being unwell,
Interesting that other women also say they were tired for a year or more, since the docs keep saying we "don't have symptoms" of breast cancer. I had been going to the doctors for 2 years telling them I didn't feel good and having all sorts of tests - that missed cancer. I iimmediately felt better/ different after mass was removed.)  I also had PAIN where the mass was growing but keep hearing "if it's not painful, it's not cancer." 
I also had dreams of my home being invaded for at least a year (by evil people, evil spirits, wild animals, etc.)
 
10/  How was your cancer first discovered  mammo - ultrasound
 
11/  Have you had a re-occurence in the past 2 years and if so,  . . . DX in May 2007
 
12/  How often did you have mammograms Before you were diagnosed/ Annually but had skipped the last year
 
13/  Have you ever had a traumatic blow to your body and where was it/ I fell off a skateboard & hurt my hip when I was 38! don't think that's related -- except that it is a source of INFLAMMATION which I think is related and was chronic before the DX.
 
14/  Have you ever had your hormones checked Prior to being diagnosed/no
 
15/  Before you were diagnosed, what medications were you on/ dilantin, asthma meds
 
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed/ yes
 
BUT ALSO, when I was little we used DDT to spray for flys in our barns. I live by irrigated fields which have ariel applications of herbicides and pesticides and the spray comes close enough that it kills trees and shrubs on the perimeter of my acerage.  I ate some lead paint when I was a baby.  I started coloring my hair before 1964. I have used lotions, makeup, and shampoos that contain ingredients known to be carcinogens in lab animals and that are banned in the EU but still being sold in the U.S. 
 
We are exposed to toxins that make us toxic and then they use toxins to treat us.  In this kind of environment, where do we even begin a discussion like this?
 
 Arnica
 


Posted By: Galina2
Date Posted: Dec 05 2007 at 8:03pm

Another question: What chemo treatment you are getting?

What strikes me is the FATIGUE most of us have!!!!

Second, we are mostly younger, around 45-48!

I had fatigue for years and was even treated for that, I thought it was the "fatigue syndrom" or low Fe.



-------------
Believing is 50%!Dx 7/10/07, Lumpectomy 8/24/07, double mast/no recont. 10/01/07, IDC, 3 cm, Grade 3, 0/4 nodes, Stage IIA, ER-/PR- HER2- Age 48, chemo 11/23/07 lung spots 3/08


Posted By: Galina2
Date Posted: Dec 05 2007 at 8:10pm
Pain.
Interesting, Arnica,
I was in HORRIBLE PAIN when my lump was growing from about 1 cm to about 6 cm when I was finally shedulled for lumpectomy! I was told it's not cancer, because cancer usually do not hurt!! For that reason I had to wait 4 weeks in pain for lumpectomy!
Another question to the survey: how timely was your treatment? Finally, after 4.5 months I had started chemo. I was told I still have 1 month window?!? I do not understand this, I thought if I get mets, there will be more chemo...


-------------
Believing is 50%!Dx 7/10/07, Lumpectomy 8/24/07, double mast/no recont. 10/01/07, IDC, 3 cm, Grade 3, 0/4 nodes, Stage IIA, ER-/PR- HER2- Age 48, chemo 11/23/07 lung spots 3/08


Posted By: ladygolfer
Date Posted: Dec 21 2007 at 2:37am
Lucky, I am a new member and I will be happy to answer your questions.
1/   How old are you-60
2/   Where were your born and where have you lived -NJ. Have lived in NJ, PA, traveled in 48 states, cA and Mexico from 2001-2004. Now live in AZ.
3/   What is the specific name of your type of cancer Other than it being
       triple negative- IDC
4/   What is your blood type- A
5/   Are you a drinker or a smoker-No
6/   Has anyone else in your family had Any kind of cancer- sister died of Hodgkins Disease
7/   How many pregnancies have you had-1
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox-All
9/    Did you have any symptons of your breast cancer - No
10/  How was your cancer first discovered- I found lump doing self exam.
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur- No
12/  How often did you have mammograms Before you were diagnosed-Yearly
13/  Have you ever had a traumatic blow to your body and where was it- No
14/  Have you ever had your hormones checked Prior to being diagnosed-No
15/  Before you were diagnosed, what medications were you on- None
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed - No
Etc.   




Posted By: twill6
Date Posted: Dec 21 2007 at 9:23am

About the survey:   We could gather our own survey info by a category
such as -    " Please Give Us Your Facts"

1/   How old are you - 46 when diagnosed, 48 now
2/   Where were your born and where have you lived - Born in IL, lived in FL and now TX
3/   What is the specific name of your type of cancer Other than it being
       triple negative - Ductal Carcinoma in situ
4/   What is your blood type - O positive
5/   Are you a drinker or a smoker -o
6/   Has anyone else in your family had Any kind of cancer-yes, sister had breast cancer, great aunts and some cousing,I am BRCA1 pos
7/   How many pregnancies have you had - 2
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox - all of the listed
9/    Did you have any symptons of your breast cancer - no
10/ How was your cancer first discovered -felt lump
11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur - no
12/ How often did you have mammograms Before you were diagnosed - annual
13/ Have you ever had a traumatic blow to your body and where was it - not that I remember
14/ Have you ever had your hormones checked Prior to being diagnosed - no
15/ Before you were diagnosed, what medications were you on - Toprol, Prevacid, singulair
16/ Have you been prescribed antibiotics more than once in a year Before your were diagnosed - yes, as a child for tonsils and sinus problems as an adult    


Posted By: caprice
Date Posted: Dec 25 2007 at 11:48am
1/   How old are you  47 now/39 when dx'd
2/   Where were your born and where have you lived born in MA,lived in MA,NH,NJ now PA
3/   What is the specific name of your type of cancer Other than it being
       triple negative poorly diff IDC grd 1 IDC
4/   What is your blood type O-
5/   Are you a drinker or a smoker mod drinker
6/   Has anyone else in your family had Any kind of cancer mat grdmthr colon,esophageal,pat grdfthr lung, ? BC,paternal cousins (2) DCIS & IDC,paternal aunt ovarian ( died from this)
7/   How many pregnancies have you had one
 
8/   What childhood diseases have you had :   Chicken Pox
9/    Did you have any symptons of your breast cancer No
10/  How was your cancer first discovered lump found during gyn exam
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur (L) lung
12/  How often did you have mammograms Before you were diagnosed annually...........
13/  Have you ever had a traumatic blow to your body and where was it No
14/  Have you ever had your hormones checked Prior to being diagnosed during pregnancy
15/  Before you were diagnosed, what medications were you on prilosec
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed No
Etc.    I also have MS dx'd age 23, 4 neighbors in my immediate childhood neighborhood all dx'd with breast ca AND MS ..............


Posted By: shellieh51
Date Posted: Dec 25 2007 at 3:51pm

In what state did you spend your childhood where neighborhood children were also diagnosed?  Very interesting.



-------------
dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 -


Posted By: caprice
Date Posted: Dec 26 2007 at 2:40pm
I was raised in MA.........CP


Posted By: twill6
Date Posted: Dec 28 2007 at 6:41am
Caprice,

This is interesting that you also have MS. My sister was diagnosed with MS several years ago and with BC 6 years ago. Her cancer is now in her liver, colon and bloodstream and there is nothing more that they can do for her. Sometimes the chemo aggravated her MS, especially the steroids. I don't know if she is triple neg or not, she doesn't know. They say that doing the Gene testing is a mute point now, I think they should since my sister has 2 daughters and I am BRCA1 positive.


Posted By: Ronda
Date Posted: Dec 28 2007 at 7:54am
Hey gals,  Vitamin D deficiency is linked to MS and Breast cancer along with a huge list of other issues.  This may be the single most important thing you can do for yourselves in this fight for your life.  I've posted more information on this topic on this site.  Look for it, read it and talk to your doctors about it.  As my D levels are rising my energy, immune system and life force are returning.  This is HUGE!  You want your levels to be at the high end of the test range NOT the low end of normal.  Good Luck.


Posted By: caprice
Date Posted: Jan 01 2008 at 9:00am
Thanks Ronda!!  How much supplemental Vit E do you take?
 
cp


Posted By: caprice
Date Posted: Jan 01 2008 at 9:01am
Oops..........I meant Vit d..............LOL


Posted By: Ronda
Date Posted: Jan 02 2008 at 6:50pm
I started taking 2000 IU's a day starting in Mar/April. until I saw how low my levels were in May (they were at 26 and still within "normal range according MD's but not ND's)) and have been taking 4000-5000 IUs daily since.  My levels took a dive during chemo (down to 19)and when I checked 2 months ago they were at 33. My goal is to have them at 50-55 (the high end of the normal scale).  Don't accept being at the low end of normal, it's not enough.  The higher your levels get the better you'll feel, you don't want to go past 55 (the high end of your test range).  They go up very slowly.  If you can get tested and you are low your doc will give you the good stuff and you can get you levels up more quickly (in 3 months or so) otherwise it could take a year.  Google "d deficiency 2007" and you'll see some of the recent stuff written about it.  Take out the 2007 and you'll see this isn't a new discovery, we've known about this forever, but forgot how important it is.  What is new is we're finding out how many other issues are affected by this deficiency.  I've told everyone who will listen and 5 out of 5 friends who were tested were low.  This is all science based and extremely serious, you'll know what I mean once your levels start going up, you'll feel the difference.  The sad thing is it's a cheap and easy fix that very few are paying attention to because there is no money to be made.   Vitamin D is cheap cheap cheap!
 
Be sure to use D3
 
Here's to your health!!
 
Ronda  


Posted By: bronwyn
Date Posted: Jan 09 2008 at 11:31pm
Hi here are my answers to your survey

1. 47
2. born in sydney, australia have lived on the north coast of NSW for the last 25 years
3. metastatic ductal carcinoma
4. 0 neg
5.ex drinker (never much ) ex smoker
6. father had prostate and bladder cancer
7. 2 breast fed long time no problems
8. hodgkins disease at 17 german measles, mumps tonsillitis (removed with adenoids )
9. no
10. by my partner
11. no, one year post treatment
12. had one 12 months prior to diagnosis
13. yes fractured sternum
14. yes
15. nil
16. no ,am interested hearing from anyone else who had hodgkins?


Posted By: Cheryl51
Date Posted: Jan 26 2008 at 3:17pm
I have tried to find the survey to give my facts and cannot seem to locate it.  Help!
Cheryl51


Posted By: trip2
Date Posted: Jan 28 2008 at 5:43am
Hi Cheryl,
 
Go back to page 1 and you will see a list of questions.
 
Welcome!


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: ChrisCal
Date Posted: Jan 28 2008 at 8:14am

Hi - I'm new to this forum, although I have been reading everything on this site for the past 6 months.  You all have been a source of great encouragement.  So - THANKS, to start!

I am 39 and in 7/07 was dx with Stage III bi-lateral breast cancer.  In 4/07 had my annual mammogram and mentioned a sore lymph node.  They used the Ultrasound and said it was nothing - just a sore muscle.  It came and went with my period since 3/07, so no one was worried as the mammogram was clear (no changes since 6/03 baseline - even tho I have dense tissues).  Still having pain from the lump and it was staying longer and longer after my period disappeared.  CAT Scan on 5/25 measured the left axilla node at 2 cm.  Dr. said - "No worries - cancer doesn't hurt and cancer doesn't come and go"  we will remove this fatty cyst only because it is bothering you.  On 6/13/07 the node was removed and by that time it was 7 cm.  Pathology could not determine the origin of the cancer so for 2 long weeks it was CUP (Cancer of Unknown Primary).  Had PET and bi-laterial breast MRIs that showed small shadow on right breast, mass in right axilla node and small shadow in internal pectural node.
 
First oncologist on 7/2 (no one would take me as a patient with a CUP dx!) said Stage IV - incurable - start harsh chemo immediately.  She said no need to investigate BC - she knew BC and this wasn't it (even with paternal family history).  Finally got into Washington Hospital Center's Cancer Instiute and saw the director who is a specialist in breast cancer (research and treatment).  She immediately did a biopsy on right breast and determined it was TripNeg Breast Cancer.  Stage III. Poorly differentiated carcenoma. 
 
I did 6 rounds of Chemo (TAC:  T-Taxotere A-Adriamycin C-Cytoxan).  Surprisingly, came through that without any complications at all (the last 3 rounds I had constipation, but that was it).  12/07 had a double mastectomy and removal of 2 positive right axilla nodes.  Breast reconstruction (expanders now, implants after Rad).  6 weeks of daily radiation coming up starting in March 08.
 
Family, friends, co-workers, neighbors have been great and SO supportive.  But now I feel more tired than during chemo.  I have been so positive, but am now starting to worry like everyone else on this board - 3 months until you run tests again . . . ugghhh??!.  Am I tired because I am getting mets?   Now if I stop and slow down ever (which I have to once and while), I wonder.
 
I tested positive for BRCA1.  That was no surprise.  My paternal grandmother died at 47.  By the time she went to the Dr. 6 months before her death, she had colon, ovarian and breast cancers.  My paternal aunts both had BC:  one at age 32 in right breast; the other at ages 38 (right breast) and 42 (left breast) and 44 (bone mets).  My younger sisters - one 38 (tested negative for BRCA1) and one 34 (tested positive for BRCA1) are now involved.  I just want to DO something more. 
 
My former boss is a two year Male BC survior and put me in touch with his charities, but talking to the folks, they don't have specific fund raising for TNBC.  My advise to others:  be pushy with your Drs., ask others for info. and help and just STAY POSITIVE.  The latter is what will save your life!
 
If anyone has advice on what tests/labs I should request now - please let me know.  My second aunt (who had BC x2 and bone mets) was also triple negative so I feel I am following her dxs (will I have bone mets soon and how can I test for this or prevent it??).  She is alive and a survivor, but if I can watch carefully for something (even if I have to be pushy and insist on specific tests), I want to do it.  Please lend me your experience!!
 
Embarrassed  A Washington DC survivor who "Fought like a Girl"!!! and won!
 
  1. How old are you?  39
  2. Where were your born and where have you lived?  Born in Washington, D.C. lived in Northern Virginia, Maryland, New Jersey, Massachusetts, Riyadh, Saudi Arabia and Bogota, Columbia
  3. What is the specific name of your type of cancer Other than it being triple negative?  Poorly Differentiated Carcenoma
  4. What is your blood type?  A-
  5. Are you a drinker or a smoker?  Social Drinker; Smoked on and off from 18 - 39
  6. Has anyone else in your family had Any kind of cancer?  Paternal Grandmother=Breast, Colon and Ovarian; Paternal Aunt=BC; Paternal Aunt=BC x2, Bone Mets
  7. How many pregnancies have you had?  2
  8. What childhood diseases have you had :   Mumps, Measles, Chicken Pox?  Chicken Pox
  9. Did you have any symptons of your breast cancer?  Very Tired for 6 months prior; had axilla lymph node soreness
  10. How was your cancer first discovered?  Soreness and then lump in left axilla node under armpit
  11. Have you had a re-occurence in the past 2 years and if so,  where did it re-occur?  I'm new to this so no!
  12. How often did you have mammograms Before you were diagnosed?  Because of paternal family history, starting at 26 every other year had mammograms
  13. Have you ever had a traumatic blow to your body and where was it?  No
  14. Have you ever had your hormones checked Prior to being diagnosed?  No
  15. Before you were diagnosed, what medications were you on?  Birth control and Lexapro
  16. Have you been prescribed antibiotics more than once in a year Before your were diagnosed?  yes

   



Posted By: Cheryl51
Date Posted: Jan 28 2008 at 3:51pm
Thank you, Pam. 
Hope you are well,
Cheryl51


Posted By: Galina2
Date Posted: Jan 29 2008 at 12:19pm

Hello, CrisCal! Good Girl, just hang in there! Your story is quite similar to mine! I have done some research and I have a blob somewhere here, but, unfortunately, there is not very much incouragement! Would be nice to know, what you relative did to survive the bone mets! (At this point there is nothing for bone mets and it can be missed for other diseases of bones).

I have came accross the American recommendation for TNT (Triple Negati ve Tumor). Below is the link. I think it's on page 18-19.  The diagram shows the possibilities for TNT, e.g. wait for mets, than try 3 different chemo, if not working, palliative care! Pretty dim! Some other of my research include papers on diferent tests: unfortunately, the tests (CT, PET, bone scan, even BC markers) do not show "improvement" in survival, lots of FALS POS, POS only for low % of cancer survivors, expensive to outcome, so NONE is recommended! The European Oncological Society and I think Australians recommends to check BC markers CA 15-3 and CEA. The increase in BC Markers by 10-25% (based on different papers and scietific boards) means the tumor is growing inside of body somewhere.  Again, FALSE POS is common, so the Americans do not recommend! My ONC doens't even want do my 3 or 6 month follow up!!!! I am also looking for a good soul ONC, who would do at least some BC Markers.  There are some scietific papers which show increased survival rates, if mets are treated after BC Markers go up. The survival goes from 2-9 month to 9-36 month.  Also, there is some evidence, if recurrence is treated, e.g. secondary cancer removed, the survival time is better.  I still think they treat us women like pigs and let us die, it's "cheeper"!  I just had my friend dianosed with cnacer and he got PET scan immediately and ONC in 5 days! I had to wait 4.5 month!  Everybody situation is different, but some things gets the blood boiling! I hugely agree with you we have to fight and do not be a stat or a chart on the American Onc recommended treatment!!!!!!!!!!!!!!! Meet the Dragon and BEAT IT!!!!!!!!AngryAngry
 
Some other research follows, for sisters interested.... Galina
 
 
Serum Tumor Markers in Breast Cancer: Are They of Clinical Value?

Michael J. Duffy

1 Department of Nuclear Medicine, St. Vincent’s University Hospital; UCD School of Medicine and Medical Science, Conway Institute of Biomolecular and Biomedical Research, University College Dublin; and Dublin Molecular Medicine Institute, Dublin, Ireland.

Address for correspondence: Department of Nuclear Medicine, St. Vincent’s University Hospital, Elm Park, Dublin 4, Ireland. Fax 353-1-2696018; e-mail mailto:Michael.J.Duffy@ucd.ie - - .

http://www.clinchem.org/cgi/content/full/52/3/345 - http://www.clinchem.org/cgi/content/full/52/3/345

Although serial CA 15-3 concentrations can preclinically detect recurrent/metastatic disease, it is unclear whether the introduction of early treatment based on this lead time improves disease-free survival, overall survival, or quality of life for patients. In an attempt to address these issues, several small-scale studies have been carried out. In one of the first of these, Jager ( http://www.clinchem.org/cgi/content/full/52/3/345#R37#R37 - 37 ) randomized patients with increasing concentrations of tumor markers (CA 15-3 or CEA) but without evidence of metastatic disease to receive (n = 21) or not receive (n = 26) medroxyprogesterone acetate. For the untreated patients, the median time interval between increase in marker concentration and detectable metastasis was 4 months, but for the treated patients it was >36 months.

In a second study, Nicolini and coworkers ( http://www.clinchem.org/cgi/content/full/52/3/345#R38#R38 - 38 )( http://www.clinchem.org/cgi/content/full/52/3/345#R39#R39 - 39 ) compared outcome in 36 asymptomatic patients who received salvage treatment based on tumor marker increases (CA 15-3, CEA, or TPA) vs 32 patients who were given treatment only after radiologic confirmation of metastasis. Survival from both the time of mastectomy and salvage treatment was significantly improved in the group with tumor marker–guided treatment than in those treated conservatively.

The European Group on Tumor Markers (EGTM) as well as the National Academy of Clinical Biochemistry (NACB), however, recommend the use of tumor markers during surveillance ( http://www.clinchem.org/cgi/content/full/52/3/345#R44#R44 - 44 )( http://www.clinchem.org/cgi/content/full/52/3/345#R45#R45 - 45 ).

On the basis of data from 11 low-level evidence studies ( http://www.clinchem.org/cgi/content/full/52/3/345#R9#R9 - 9 ), an ASCO Panel concluded that 66% of patients with chemotherapy-induced disease regression exhibited decreases in marker concentrations, 73% of those with stable disease had no significant change in marker concentrations, and 80% with progressive disease displayed increasing concentrations ( http://www.clinchem.org/cgi/content/full/52/3/345#R9#R9 - 9 ). In most of these studies, a change in CA 15-3 concentration >25% was regarded as a significant alteration.

The same ASCO Panel also reviewed the literature on the use of CEA in monitoring response to treatment ( http://www.clinchem.org/cgi/content/full/52/3/345#R9#R9 - 9 ). Eighteen low-level evidence studies were reviewed. Of these, 6 reported results only in patients with high concentrations of CEA. Overall, 82% of the patients were found to have decreasing concentrations with disease response, whereas 74% had increasing concentrations with progressive disease. Of the 12 studies reporting results for patients with advanced disease irrespective of whether CEA was increased, 61% of patients showed a decrease in CEA concentrations with tumor response and 65% showed an increase with tumor progression.

Both the NACB and EGTM Panels recommended use of CA 15-3 for monitoring therapy in patients with advanced breast cancer ( http://www.clinchem.org/cgi/content/full/52/3/345#R44#R44 - 44 )( http://www.clinchem.org/cgi/content/full/52/3/345#R45#R45 - 45 ). According to the EGTM Panel, markers should be measured before every chemotherapy course and at 3-month intervals for patients receiving hormone therapy ( http://www.clinchem.org/cgi/content/full/52/3/345#R44#R44 - 44 ). This Panel defined a clinically significant increase in marker concentration as an increase of at least 25% over the previous value. This increased concentration should be confirmed with a second sample taken within 1 month. The Panel also stated that a confirmed decrease in marker concentration of >50% was consistent with tumor regression ( http://www.clinchem.org/cgi/content/full/52/3/345#R44#R44 - 44 ).

Caveats in the Use of Tumor Markers for Surveillance and Monitoring of Therapy in Patients with Breast Cancer

Despite recommendations from the ASCO Panel ( http://www.clinchem.org/cgi/content/full/52/3/345#R9#R9 - 9 )( http://www.clinchem.org/cgi/content/full/52/3/345#R41#R41 - 41 ), serum tumor markers such as CA 15-3 are widely used, particularly in Europe, for both postoperative surveillance and monitoring therapy in patients with advanced breast cancer. When serum tumor markers are used in these settings, several points should be borne in mind, including the following:

  • None of the available markers is increased in all patients with breast cancer even in the presence of advanced disease. For those patients with advanced disease who do not have increased CA 15-3 concentrations, other markers, such as CEA, TPA, TPS, or the shed form of HER-2, may be considered for monitoring purposes.
  • The available markers are most sensitive for detecting distant metastases and are of little value in diagnosing locoregional recurrences ( http://www.clinchem.org/cgi/content/full/52/3/345#R56#R56 - 56 )( http://www.clinchem.org/cgi/content/full/52/3/345#R57#R57 - 57 )( http://www.clinchem.org/cgi/content/full/52/3/345#R58#R58 - 58 )( http://www.clinchem.org/cgi/content/full/52/3/345#R59#R59 - 59 ).
  • The magnitude of change between successive marker concentrations that constitutes a critical change is not clear. According to Soletormos et al. ( http://www.clinchem.org/cgi/content/full/52/3/345#R60#R60 - 60 ), this so-called critical difference should be based on both the analytical imprecision of the assay (CVa) and the normal intraindividual biological variation (CVI). Assuming CVa values of 11.2% for CA 15-3, 9.5% for CEA, and 11% for TPA, successive concentrations must differ by 30%, 31%, and 72%, respectively, for P values to be significant at a 0.05 level ( http://www.clinchem.org/cgi/content/full/52/3/345#R60#R60 - 60 ).
  • Paradoxical patterns of tumor marker concentrations after initiation of chemotherapy may occur. For example, transient alterations in marker concentrations can occur after the commencement of chemotherapy ( http://www.clinchem.org/cgi/content/full/52/3/345#R61#R61 - 61 )( http://www.clinchem.org/cgi/content/full/52/3/345#R62#R62 - 62 )( http://www.clinchem.org/cgi/content/full/52/3/345#R63#R63 - 63 ). The spurious increases or spikes are probably attributable to therapy-mediated apoptosis or necrosis of tumor cells. Hayes et al. ( http://www.clinchem.org/cgi/content/full/52/3/345#R62#R62 - 62 ) reported a spike for either CA 15-3 or CEA in 7 of 16 patients undergoing chemotherapy. For CA 15-3, the peak of the spike above the initial value was 125% (range, 30%–230%), and its duration was 67 days (range, 31–101 days). All patients in whom a spike was observed ultimately showed either disease regression or had stable disease. In another study, spikes in CA 15-3 and CEA returned to pretreatment values by 60 days ( http://www.clinchem.org/cgi/content/full/52/3/345#R63#R63 - 63 ). As well as chemotherapy, treatment with granulocyte colony–stimulating factor can also cause increases in CA 15-3 concentrations ( http://www.clinchem.org/cgi/content/full/52/3/345#R64#R64 - 64 ).
  • Certain benign diseases may give rise to increased marker concentrations. Thus, chronic active hepatitis, liver cirrhosis, sarcoidosis ( http://www.clinchem.org/cgi/content/full/52/3/345#R65#R65 - 65 ), hypothyroidism ( http://www.clinchem.org/cgi/content/full/52/3/345#R66#R66 - 66 ), and megablastic anemia ( http://www.clinchem.org/cgi/content/full/52/3/345#R67#R67 - 67 ) have all been reported to increase CA 15-3 concentrations.


Conclusion

The main disadvantages of existing serum markers for breast cancer are a lack of sensitivity for low-volume disease and a lack of specificity. Consequently, the available markers are of no value in either screening or diagnosing early breast cancer. Although of little use for early diagnosis, however, CA 15-3 may be the first independent circulating prognostic marker described for breast cancer. Preoperative CA 15-3 concentrations may thus be combined with established prognostic factors for use in deciding which lymph node-negative breast cancer patients should receive adjuvant chemotherapy. Currently, one of the most widely used applications of tumor markers in breast cancer is in the follow-up of patients with diagnosed disease. In the absence of data from a large randomized trial, however, the clinical value of this practice is unclear. Finally, markers are potentially useful in monitoring therapy in advanced disease, particularly in patients who cannot be assessed by standard modalities.

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For Myself:

Because of cancer I got to meet many cool people from the oncs to the ladies on this site.

     Because of cancer I got to feel the strength of the love my husband has for me when he  successfully made a bald, one boobed woman feel sexy!

     Because of cancer I was embraced by family, friends, strangers, and healers of a wide variety who gave me their time, food, prayers, hugs, listening skills, and talents to save my life. 

     Because of cancer I quit biting my nails, got a boob job, lost weight, started taking better care of me, and found I actually look younger with shorter hair.

     Because of cancer I learned a whole lot about vitamin D and have shared the information with many friends who's health (not just breast cancer) is being transformed by this knowlege.

     Because of cancer I have the freedom to say "no" to say "yes" and to make this life how I want it.

 

     Because of cancer I discovered I'm one tough mama.

     Because of cancer I fianally got some much needed quiet time.

     Because of cancer I am in control of my destiny. 

    No one gets out of this "game of life" alive, but I believe we have a lot more control than we give ourselves credit for.  Attitude is only part of it.  Knowledge is paramount, but knowledge without action is worthless, and action without a good attitude is misery. 

For My ONC:

After a lifetime of believing "attitude is everything"....they went and did a study about positive attitude and its effect on cancer, (I must find the study to share with you)....but imagine my positive bubble bursting when the study concluded that the "positive attitude theory" just adds a guilt element of failing as your own cheerleader and subsequently leads to somehow you end up feeling responsible for the disease should it return by not being positive enough. 

 

Yup, first the fruits and vegetables being able to prevent recurrences betrayed us by revealing no significant change in the two groups after 7 years (not saying fruit and vegetables aren't healthier than junk food)...now the attitude theory...hopefully the low-fat theory will still remain solid and benefit us because I gave up Ben and Jerry (currently have 6 (untouched containers) of my favorite flavors in the freezer)

 

But, as my mother has missionaries in Africa praying for me through the jungles, Jewish people in their synagogues, Buddhists in China, friends of  friends praying in mosques...and by using the Vatican as her starting point...she has widened her circle of prayer to all corners of the world, and maybe this time...this most important time...maybe Mother knows best and all prayers will be answered for a cure for us (who would argue with a woman holding a rosary and a prayer book), and for all the non-believers, that the brilliant scientists unlock the mystery of our cancer.

 

 

JNCI Journal of the National Cancer Institute 2004 96(24):1823-1831; doi:10.1093/jnci/djh338

Treatment of Axillary Lymph Node–Negative, Estrogen Receptor–Negative Breast Cancer: Updated Findings From National Surgical Adjuvant Breast and Bowel Project Clinical Trials

Bernard Fisher, Jong-Hyeon Jeong, Stewart Anderson, Norman Wolmark

Affiliations of authors: National Surgical Adjuvant Breast and Bowel Project, Operations Center (BF, NW), and Biostatistical Center, Department of Biostatistics and University of Pittsburgh, Graduate School of Public Health (JHJ, SA)

Correspondence to: Bernard Fisher, 4 Allegheny Center, Suite 602, Pittsburgh, PA, 15212-5234 (e-mail: mailto:bernard.fisher@nsabp.org - bernard.fisher@nsabp.org )

- Tamoxifen Failure in ER-Negative Tumors"this result is consistent with the EBCTCG overview, which showed no significant effect from adjuvant hormone therapy in ER-negative tumors", and based on this concluded by recommending that "cytotoxic therapy should remain the adjuvant treatment of choice in ER-negative tumors".

This has been further confirmed in numerous studies including NSABP (National Surgical Adjuvant Breast and Bowel Project) B-23 (Fisher et al., J Clin Oncol (2001): http://www.jco.org/cgi/content/full/19/4/931?ijkey=79120c167bb5ab15c374ec78634fbb13d2227b09 - Tamoxifen and Chemotherapy for Axillary Node-Negative, Estrogen Receptor–Negative Breast Cancer: Findings From National Surgical Adjuvant Breast and Bowel Project B-23 ), a study specifically designed to provide a decisive test of the value, if any, of TAM for the treatment of women with ER-negative tumors - more precisely, the exact objective was (1) to determine whether AC was comparable or superior to CMF when used to treat node-negative patients with ER-negative tumors, (2) whether, when given with TAM, either of those chemotherapy regimens was more effective than when administered with placebo, and (3) to resolve the indeterminacy and vagueness of the earler EBCTCG observation that "for women with tumors that have been reliably shown to be ER-negative, adjuvant tamoxifen remains a matter for research"; NSABP B-23 found that "no significant difference in any outcome was observed when chemotherapy-treated patients who received placebo were compared with those given TAM[oxifen]". Again, more precisely they found that when the CMF- and AC-treated groups were combined and women who received placebo were compared with those who received TAM, no significant difference in RFS (relapse-free survival) was observed, and that there was, likewise, no difference when RFS was related to age (=<49 aqnd =>50), with the same lack of significant difference from placebo for EFS (event-free survival ) and (5 year) overall survival. Their conclusions included that "based on the information in this report of B-23, it is difficult to justify the administration of TAM to patients with ER-negative breast tumors and negative axillary nodes" given that the study " . . . failed to demonstrate any semblance of a benefit from TAM". See also the commentary of Elledge (J Clin Oncol (2006): http://www.jco.org/cgi/content/full/24/9/1323 - Tales From a Targeted Therapy ) who, noting the almost certain large human patient toll, calls for accurately identify targets of targeted therapy, at the very least to determine who may and may not benefit from effective endocrine therapies such as tamoxifen, commending the absolutely vital and dispositive study of Marco Colleoni (see below for full discussion of this seminal trial) reporting for the IBCSG - the International Breast Cancer Study Group - 13-93 (International Breast Cancer Study Group, J Clin Oncol (2006): http://www.jco.org/cgi/content/full/24/9/1332?ijkey=bef3453d27b9cfca859c1a6f085ff664ece9a292 - Tamoxifen After Adjuvant Chemotherapy for Premenopausal Women With Lymph Node-Positive Breast Cancer: International Breast Cancer Study Group Trial 13-93 ) as finally driving "a stake through the heart of the idea that tamoxifen is effective in accurately measured ER-negative tumors".

These findings on the failure of benefit of TAM in the ER- tumor context has since these studies continued to be robust and further validated in methodologically high-quality studies: thus the SWOG team of Hutchins and colleagues (Hutchins et al., J Clin Oncol (2005): http://www.jco.org/cgi/content/abstract/23/33/8313 - Randomized, Controlled Trial of Cyclophosphamide, Methotrexate, and Fluorouracil Versus Cyclophosphamide, Doxorubicin, and Fluorouracil With and Without Tamoxifen for High-Risk, Node-Negative Breast Cancer: Treatment Results of Intergroup Protocol INT-0102 ) in their Intergroup Protocol INT-0102 trial sought to determine the efficacy of the CMF regimen versus CAF in node-negative breast cancer patients, with and without tamoxifen (TAM), overall and by hormone receptor (HR) status; they found that the effect of TAM was different between the receptor status groups, with TAM being beneficial for HR+ patients (note, in the protocol of this study, hormone-responsive indicated ER+), but not for HR-negative (that is, ER-) patients, and concluded that TAM is effective in HR-positive (ER+) disease, but not in HR-negative (ER-) disease.

Similarly, Arpino et al. (J Clin Oncol (2005): http://www.jco.org/cgi/content/abstract/23/21/4687 - Hormone Receptor Status of a Contralateral Breast Cancer Is Independent of the Receptor Status of the First Primary in Patients Not Receiving Adjuvant Tamoxifen ) found that among tamoxifen-treated patients 50% of patients with a PR+ primary breast cancer versus 27% of patients with a PR- primary tumor developed a PR+ contralateral breast cancer, suggesting that other reasons need to be explored to clarify the failure of tamoxifen to reduce the incidence of contralateral breast cancer in patients with receptor-negative primary tumor. And the GABG-IV D-93 (German Adjuvant Breast cancer Group) trial (Kaufmann et al., J Clin Oncol (2005): http://www.jco.org/cgi/content/abstract/23/31/7842 - Tamoxifen Versus Control After Adjuvant, Risk-Adapted Chemotherapy in Postmenopausal, Receptor-Negative Patients With Breast Cancer: A Randomized Trial (GABG-IV D-93)—The German Adjuvant Breast Cancer Group ) added to this knowledge, concluding that "this study contributes substantially to finalization of the presently emerging evidence that tamoxifen does not benefit women with receptor-negative breast cancer after chemotherapy".

Mamounas (Clin Med Res (2003): http://www.clinmedres.org/cgi/content/full/1/4/309 - NSABP Breast Cancer Clinical Trials: Recent Results and Future Directions ) has offered an expert summary of the findings of the many NSABP trials current to 2003, noting that "when these results are taken together with those evaluating the effect of tamoxifen in patients with invasive breast cancer and negative estrogen receptors, they are consistent with the observation that tamoxifen has no appreciable benefit in reducing rates of recurrence or rates of contralateral breast cancer in patients with ER-negative tumors", and noting that some poorly designed and insufficiently powered early studies appeared to suggest, now known counterfactually, that tamoxifen may have some benefit in the estrogen receptor-negative context, Mamounas concludes that nonetheless "since that time, an increasing body of evidence has demonstrated that tamoxifen confers no significant advantage in patients with ER-negative tumors".

And Albain in the editorial cited above (J Natl Cancer Inst (2004): http://jncicancerspectrum.oxfordjournals.org/cgi/content/full/jnci;96/24/1801 - Adjuvant Chemotherapy for Lymph Node–Negative, Estrogen Receptor–Negative Breast Cancer: A Tale of Three Trials ), discusses the NSABP B-23 (see Fisher, above) and SWOG Intergroup Trials (see Hutchins, above), concludes that "these results definitively disprove the hypothesis that tamoxifen might have clinically significant cytocidal activity apart from its known interaction with the estrogen receptor".

Finally, most recently, Marco Colleoni reporting for the IBCSG - the International Breast Cancer Study Group - 13-93 (International Breast Cancer Study Group, J Clin Oncol (2006): http://www.jco.org/cgi/content/full/24/9/1332?ijkey=bef3453d27b9cfca859c1a6f085ff664ece9a292 - Tamoxifen After Adjuvant Chemotherapy for Premenopausal Women With Lymph Node-Positive Breast Cancer: International Breast Cancer Study Group Trial 13-93 ) which sought to evaluated the value of adjuvant tamoxifen after chemotherapy for premenopausal women with breast cancer, not only concluded that the use of tamoxifen as adjuvant therapy for patients with ER-negative tumors is not recommended, but that in fact, in an unplanned exploratory analysis, "tamoxifen had a detrimental effect on patients with ER-absent tumors compared with no tamoxifen". It is clear from these findings that (1) tamoxifen interacts differently with cellular growth contingent on ER status: short-term tamoxifen treatment yields a significant decrease of the proliferation antigen Ki-67 (a nuclear antigen associated with cell proliferation) in patients with ER+ disease, whereas no effect was observed in patients with ER- breast cancer, and (2) cross talk between tamoxifen and growth factor receptor pathways might be principally responsible for tumor progression (as also suggested by Osborne & Schiff (Breast (2003): http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WC2-49PYMC3-1&_coverDate=12%2F31%2F2003&_alid=418984839&_rdoc=1&_fmt=&_orig=search&_qd=1&_cdi=6726&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=603acf30ff803af215705869c1a6627a - Growth factor receptor cross-talk with estrogen receptor as a mechanism for tamoxifen resistance in breast cancer ); Carolina et al., J Clin Oncol (2005): http://www.jco.org/cgi/content/abstract/23/11/2469 - Molecular Changes in Tamoxifen-Resistant Breast Cancer: Relationship Between Estrogen Receptor, HER-2, and p38 Mitogen-Activated Protein Kinase ).

Breast Cancer Watch: On the Dispositive Nature of IBCSG 13-93 Trial
Breast Cancer Watch, on the basis of critical appraisal of the Colleoni IBCSG 13-93 trial, judges the study to be of exceptionally high methodological quality, and of sufficient statistical power to support its conclusions, using 1,246 assessable axilliary node-positive premenopausal patients, enrolled betwenn 1993 and 1999, and evaluated in a randomized 2 x 2 factorial phase III clinical trial, with a primary decision target of comparing 5 years of tamoxifen therapy with no endocrine treatment, sensitive to ER status, and using DFS (Disease Free Survival) as primary endpoint, defined as length of time from the date of random assignment to any relapse (including ipsilateral or contralateral breast recurrence), the appearance of a second primary malignancy, or death, whichever occurred first. DFS and OS percentages were obtained using the Kaplan-Meier method, while sensitivity estimates derived from the Greenwood formula, and hazard ratios from the log-rank test; control for prognostic features testing for interactions between potential prognostic factors and treatment effects used Cox proportional hazards regression models, and the prognostic significance of chemotherapy-induced amenorrhea was assessed by a landmark analysis. Due conformance is noted with Data Safety Monitoring Committee (DSMC) protocols and standards, and the Scientific Committee of IBCSG DSMC in August 2000 recommended that (1) patients with ER-positive tumors who were randomly assigned to not receive tamoxifen be offered this treatment, and (2) in Augest 2002 Investigators were asked to consider the endocrine responsiveness and to discontinue the tamoxifen in patients with endocrine-nonresponsive disease. Patient eligibility, accrual and randomization met methodological requirements, and we discerned no potential conflicts of interest by any author, and none were declared.

Breast Cancer Watch on basis of this critical appraisal judges all findings of the IBCSG 13-93 Trial, summarized below, to be (1) to be founded on study design of sufficient statistical and methodolical power to support those conclusions, (2) to be dispositive on the issues they address, and (3) cross-confirmed by the findings of EBCTCG (1998), the ZEBRA Trial, the NSABP B-23 TRial, the SWOG (2005) RCT, the GABG-IV D-93 Trial, the Mamounas NSABP Summary (2003), and Arpino (2005) [all cited above]:

(1) Tamoxifen benefial effects were exclusively restricted to the ER+ cohort, for those both younger, and older than or eqaul to 40 years of age
(2) Tamoxifen did not influence DFS in patients with ER- tumors.
(3) Tamoxifen exhibited detrimental effects in ER-absent tumors (no expression of ER).
(4) For patients with ER-positive disease, the achievement of chemotherapy-induced amenorrhea was significantly correlated with improved DFS, with the magnitude of effect in patients receiving tamoxifen and patients not receiving tamoxifen being comparable.
(5) Caution is required when using endocrine therapies for women with endocrine-nonresponsive tumors at high risk of relapse.

 

Clinical Trials for TNT

Inclusion Criteria:

  • Female patient > 18 years of age.
  • Histologically proven stage II or III adenocarcinoma of the breast.
  • Patients must be candidates for neoadjuvant treatment (Tumor size > 2 cm, T2, T3, T4 and/or clinical N1 or N2).
  • ER negative, PgR negative and HER-2 negative disease (IHC 0 or 1+ and/or FISH negative)
  • Performance status of 2 or better per SWOG criteria
  • No prior chemotherapy or endocrine therapy
  • If female of childbearing potential, pregnancy test is negative and willing to use effective contraception while on treatment and for at least 3 months after the last dose of study drug.
  • Adequate bone marrow function: ANC > 1500/mm3, platelet count > 100,000/mm3, and hemoglobin > 11 g/dL
  • Adequate kidney function: serum creatinine of < 1.5mg/dl and/or creatinine clearance of > 60 mL/min
  • Adequate hepatic function: transaminases < 2 x upper limit of normal and total bilirubin < 1.5 mg/dL.
  • Patients must have a serum albumin > 3.0 g/dL.
  • Patients must have a PT, PTT within normal limits.
  • Patients must be informed of the investigational nature of the study, and must sign an informed consent in accordance with the institutional rules.
  • Pretreatment lab values must be performed within 14 days of patient registration, and other baseline studies within 30 days.
  • Patients will have a baseline mammogram, bone scan, CT chest and abdomen.
  •  

Clinical Trials

Twenty percent of women with breast cancer have the triple negative type of cancer. The standard treatment for triple negative breast cancer is typically a combination of chemotherapy, surgery, +/- radiation therapy. When treated with standard therapy women with triple negative breast cancer have a worse long term outcome as compared to women who do not have triple negative breast cancer. Triple negative breast cancers cells usually have a surface marker called EGFR (epidermal growth factor receptor). Women whose breast cancer cells have the EGFR surface marker have worse long term outcome as compared to women whose tumor do not have the EGFR marker. Erlotinib (Tarceva) targets EGFR and is currently used for treatment of other cancers like lung and pancreas. This study will assess a combination of chemotherapy with Erlotinib in women with triple negative breast cancer.

Breast cancer patients who receive chemotherapy first and then get surgery, long-term survival is longer for women who do not have any microscopic cancer at the time of surgery. The primary objective of this study is to assess whether a combination of chemotherapy and Erlotinib will result in no evidence of microscopic disease (pCR) at the time of surgery in greater than 20% of enrolled subjects. After completing all chemotherapy, all patients will also receive maintenance Erlotinib for 12 months. This is being given to study the tolerability of maintenance Erlotinib and also to evaluate if maintenance Erlotinib will decrease the rate of tumor recurrence.

 



-------------
Believing is 50%!Dx 7/10/07, Lumpectomy 8/24/07, double mast/no recont. 10/01/07, IDC, 3 cm, Grade 3, 0/4 nodes, Stage IIA, ER-/PR- HER2- Age 48, chemo 11/23/07 lung spots 3/08


Posted By: cg---
Date Posted: Jan 29 2008 at 12:41pm
Dear Galina,
 
What cancer clinic to you go to?
 
I go to the one in Hamilton, Ontario - and my first medical oncologist appointment is 6 months after I finished chemo.  I finished chemotherapy October 19 .... I had no blood work after.  My medical oncologist did not even see me following my last chemo.  I have my follow-up appointment April 8, 2008.  No blood work.  No scans.  No tumor markers.  NOTHING. 
 
There is a Dr. Rebecca Dent who works out of Sunnybrook Hospital in Toronto - who is one doctor who has an interest in Triple Negative Breast Cancer....and has a more positive attitude regarding treatment options.  Her address is Sunnybrook Regional Hospital, 2075 Bayview Avenue, Toronto, ON M4N 3M5, phone number 1-416-480-5847, fax 1-416-480-6002.
 
Read her article (the one Dr. Lisa Carey) is also quoted in.  It was done in October 2007.
 
I am going to try and see if I can get an appointment....
 
Connie


Posted By: Cheryl51
Date Posted: Jan 30 2008 at 5:56pm
I've been looking at this site for some months now and joined on 12/31/07.  I finally found the questions for the survery so here goes...
 
1)56 years old
2)I was born in Bellingham, WA, lived as an infant in Richland, WA, then Mercer Island, WA.  Family moved to Los Angeles in 1963 and Newport Beach, CA in 1965.  I now live in the San Francisco bay area and did live for several years in Marin County. 
 
I have worked as a psychotherapist for nearly 30 years, do some teaching as well as supervision of beginning therapists.  I live with my husband, my 15 year old son and my 4 year old dog(my little baby girl.) I am blessed with a wonderful support system. 
 
3)Invasive Ductal Carcinoma, Stage IIB, Grade 3 tumor, 2 out of 10 lymph nodes.  Diagnosed March 2007.
4)O Positive
5)I did come of age in the 60's and 70's so there are signs of a "checkered past"...I started smoking at age 14 and quite for the final time at age 40.  Hey, I'm from California so, of course, I did drink wine.  Sigh, those days are over.  Well, on special occasions...one glass. 
6)Mother had colon cancer but it was cured and she died at 86 of heart failure.  Distant cousin had breast cancer twice. 
7)2 pregnancies- 1 male child born in 1991 and 1 miscarriage in 1994. 
8)Usual mumps, measles, chicken pox.  Scarlet fever as an infant.  Mono at age 16.  Endometreosis in my 30's, ovarian cysts in my 40's....anyone see a progression here?? 
9)no...a real shock. 
10)Found the lump
11)No, no, no!!
12)First mamogram at age 23 when diagnosed with "dense breasts" and have had at least one annually since then. 
13)I have fractured both ankles(fortunately not at the same time) and have fractured 2 vertebrae in lower back. 
14)Yep and I was menopausal.  Post menopausal at diagnosis. 
15)I have rarely taken any medication in my life with the exception of vitamins, Chinese herbs and natural remedies. 
16)Until all this happened I have no recollection of the last time I took anibiotics. 
 
All this being said, I always considered myself healthy and the least likely person to get cancer.  HA! 
I had 4 A/C and 4 Taxol done in dense dose.  I also did a dose dense radiation therapy.  I finished treatment on October 31, 2007.  Trick or Treat.  I have since had a Petscan on 12/31/07 which was clear.  I am currently working with an accupunturist who is on my oncology team.  I am dealing with some naropothy in my feet and, more recently, my hands.  I am having some symptoms which have prompted some cardiac tests. 
I worked throughout my treatment and continue to work with my clients.  I really want to continue life as normally as possible, especially for my son. 
 
Thanks for listening and for being around. 
Cheryl51


Posted By: trip2
Date Posted: Feb 01 2008 at 4:48am
Hi Cheryl and welcome.
 
Congratulations on a clear Pet scan!  I sure hope your cardiac test results are good too.  Let us know and write anytime.
 
How do you like the accupunture treatments?  Does it really work?


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Cheryl51
Date Posted: Feb 01 2008 at 7:31am
Thank you, Pam. 
 
I feel like the accupuncture treatments really helped with the side effects of the chemo and radiation.  I did manage to work throughout my treatment and believe I felt better due to the treatments.  Now I continue with treatment to help the neuropothy and build my immune system.  By the way, the accupuncturist is a part of the oncology team at the facility where I go.  They are looking at making a more wholistic experience out of all this...
 
Cardiologist on Monday. 
Also, I recently began having some pain, swelling and redness in the right breast that had the tumor and went to the doc yesterday.  He put me on antibiotics suspecting an infection.  My breast feels like when I was nursing and, at times, about to burst.  Wierd...my right arm also feeling some discomfort.  If it's not one thing, it's another!  Is this something you(or anyone else) has dealt with? 
 
Best!
Cheryl51


Posted By: dixiegal
Date Posted: Feb 01 2008 at 9:41am
I am responding to Cheryl51 -- hey girl, I read your last two posts and had to say hello!  I am 55 and was also diagnosed in March 2007 with invasive ductal cancer, 2cm Stage 1; no positive lymph nodes (3 taken at sentinal node biopsy at time if lumpectomy)...had 4 rounds each of A/C and then Taxol; then had 33 low dose radiation treatments, finished up just before Thanksgiving (and I was thankful).  Lost hair, eyelashes and eyebrows but all is back now (hair on head is about 2" long so I possess chic high fashion hairstyle  for 1st time in my life!?!).  Also have lingering neuropathy in my toes but it's fading slowly...still have some residual fatigue from the radiation but am committed to more exercise to fight the 18 lbs I gained all summer during treatment when I collapsed at home after work and didn't work out.
RE: your body aches -- I also have noticed aches at point of the lumpectomy surgery, the lymph node biopsy and where my medi-port was inserted/removed per blood draws in my chest.  Also my left breast (where the tumor was) is a bit achy...I am chalking this up to doing more exercise, more stretching and feeling better everywhere else in my body so just notice the surgical scar areas more....Isn't some tingling normal since tissue and nerves were cut?  Had CAT scan in November,all clear.  Have first post-lumpectomy mammogram on Feb 15, first post-surgery MRI on March 7th (one year to the day of my diagnosis)... hoping for good news as we all are.....  Dixie


Posted By: Cheryl51
Date Posted: Feb 01 2008 at 1:36pm

Hey Dixie...thanks for your response.  We sure do have some common ground.  My hair is also quite stylish...and there's no work involved!!!

Thanks also for your comments on the aches and tingling sensations.  I was actually glad to feel those as it meant to me that the feeling was returning to the areas where I had surgery.  I also had a port in my chest(over the heart area).  But just this week my breast and arm/armpit area began to feel pain, heat and swelling which was different.  Boy, did I want to ignore it but bit the bullet and went to the doc.  So now I'm taking anitbiotics for a suspected infection and watching to see if that does the trick.  Fingers crossed...

Best wishes for that mamo coming up on 2/15!

Cheers,

Cheryl



Posted By: trip2
Date Posted: Feb 02 2008 at 12:58pm
Cheryl thank you for telling about your accupunture experience.  That is great that you feel it is helping you.
 
I am sooo glad you bit the bullet and went to the doc for the pain, heat and swelling.  It does sound like an infection.  Also you can get those symptoms from breast lymphedema.  The lymph fluid gets backed up.
But hopefully the antibiotics will do the trick.  Keep us posted.Smile
 
Yes as I recently read, cancer is the gift that keeps on giving.
 
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Cheryl51
Date Posted: Feb 04 2008 at 3:56pm

Pam,

I so appreciate how thoughtful you are to check in, not only with me, but with so many others.  Thank you. 
I went to the cardiologist today and learned that I do have an irregular heartbeat.  My oncologist had told me that the test I had taken was normal...WRONG!  So the next step will be a stress test at the hospital on February 29th.  This could be the result of chemo and/or radiation and/or menopause.  I felt discouraged and a pissed at the oncologist for giving me wrong information.  It is so important for all of us to know our bodies and trust our sense of what is happening and not just take the word of these docs over our own intuition. 
The antibiotics aren't working so I'm returning to my breast doc tomorrow to see if we can't get a better idea of what is happening. 
 
Hope all is well with you. 
Onward!!!!!
Cheryl51


Posted By: trip2
Date Posted: Feb 05 2008 at 4:51am
Cheryl, oh my gosh, did the Oncologist read the same results as the cardiologist?  Thank heavens you learned the correct information so that they can treat you.  That is horrible.Angry 
 I know my Onc doesn't even read results and wonder about his staff.  I usually have to bring something to their attention which works on my faith in them but that's another problem.
You are so right!!  We do need to know our bodies and stand by our feelings if something isn't right.
I'm so sorry the antibiotics aren't working but glad you'll get in today and hopefully find an answer.  Let us know and good luck.
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: dixiegal
Date Posted: Feb 05 2008 at 5:10am
Cheryl, sorry to hear about the heart issues.  I, too, agree that any intuitive or 'gut' feelings we have about an odd pain or abnormality is worth bringing up and pursuing, post surgery and treatment.
I completed my radiation therapy around Thanksgiving. On December 18th I began to feel like my heart was racing in the middle of the night and periodically during the day.  I have been taking meds for high blood pressure since Jan 07, which brought the bp under control -- these feelings of a racing heart were NEW.  I visited an Urgent Care clinic to check this out, had BP check and EKG done-- all normal.  Had a stress test a day later at doctor's recommendation, again -- all was normal.  He and my own onc felt that this was NOT caused by last summer's A/C chemo...but that it was probably my new status as menopausal, stress of the holidays, and bringing coffee back into my life after treatment.  I actually felt better when I got home, knowing I had eliminated the bad possibilities from the causes...and to date I had not had a return to the racing heart issue.  I HAVE switched to decaf coffee, eliminated even my occasional diet soda from the menu and continue my quest to get fit....to summarize,
sometimes the diagnosis is benign, but on the chance that something is wrong, I will always press for more answers, too.   Fondly, Dixie


Posted By: Cheryl51
Date Posted: Feb 05 2008 at 6:26am

Dear Pam,

Yep, supposedly my oncologist saw the same report.  Now I feel anxious about his reading of my petscan...sigh, grrrrrr.
Thanks for your concern.  I'll post later today after my visit with the breast doc. 
I continue to appreciate being able to "talk" in this group.  I feel like this is the breast cancer group I have been looking for and am so grateful. 
Best,
Cheryl


Posted By: Cheryl51
Date Posted: Feb 05 2008 at 6:34am

Hey Dixie,

I actually went online this morning because I had some thoughts for you around your husband's situation.  Has he tried Craigslist?  I know that in some parts of California(San Francisco being one) there are more needs and people who can afford to pay for personal chefs,etc.  Maybe that could be something to explore. 

Thanks for your story.  I'm so glad  all your tests were ok.  Boy, isn't it a drag to even have to give up that diet coke(one of my guilty pleasures, for sure.)  I really appreciate your support for checking it all out.  Sometimes I feel like an old lady complaining...something I NEVER wanted to be.  But I do believe that there are lessons for me here about asking for what I need and asserting what I know about my own body.  And it was kinda interesting to watch my heart on the sonogram and see the little blip of the goofy beat.  Well, I always did march to the tune of a different drummer...

Fondly back at ya,

Cheryl



Posted By: trip2
Date Posted: Feb 05 2008 at 7:02am
Cheryl, you probably already know this but if not get your own copy of your scan or test results mailed or emailed to you  or have the doc's staff run you a copy.  That way you can have a copy and read it for yourself.
 
Talk with ya later,


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Cookie
Date Posted: Feb 05 2008 at 10:32pm
Cookie Prentice
Saint Clair Shores, MI
 
1/   How old are you:    60 dx 12/14/07, dob: 4/28/47
2/   Where were your born and where have you lived:    Detroit, MI
3/   What is the specific name of your type of cancer Other than it being triple negative:    Ductal invasive
4/   What is your blood type:   A+
5/   Are you a drinker or a smoker:  drink very infrequently, never smoked
6/   Has anyone else in your family had Any kind of cancer:  Grandfather mother's side, throat - he smoked; Male cousin on mom's side, throat cancer, dx in his late 50's early 60's, heavy smoker; Female cousin on dad's side - bc (she was over 60 when diagnosed maybe in her 70's, don't know what kind)
7/   How many pregnancies have you had: 11 pregnancies, 1 delivered at 7 mos. died 1 day old, 1 full term who is 41 now
     AGE AT FIRST PREGNANCY: 19 years
8/   What childhood diseases have you had :   Mumps, Measles, Chicken Pox; do not know
9/    Did you have any symptons of your breast cancer: no, none - Aug 06 mam showed a spot to "watch", Dec. 07 dx with 3-
10/  How was your cancer first discovered: Annual mammogram
11/  Have you had a re-occurence in the past 2 years and if so,  where did it re-occur: n/a
12/  How often did you have mammograms Before you were diagnosed: yearly
13/  Have you ever had a traumatic blow to your body and where was it: not that I can remember
14/  Have you ever had your hormones checked Prior to being diagnosed: never have had hormones checked
15/  Before you were diagnosed, what medications were you on: Lipator, Wellbutrin, Zoloft, Hyzaar (blood pressure), Calcium w/Vit D, Zyrtec, Vit E, Fish Oil
16/  Have you been prescribed antibiotics more than once in a year Before your were diagnosed: possibly
 
3-, T2,No,Mx (was Mo)  but chest x-ray shows a tiny spot on my right lower lung, onc and surgeon feel it is nothing, too small to biopsy, will watch.
 
17. Was on birth control for about 10 years
 
18.  Was also on fertility drug for several months
 
19.  Never breast fed
 
20.  Dense breast tissue
 
21.  A little overweight but not until I hit 45 or 50
 
22.  Gowing up never ate veggies, except for raw ones and only carrotts, cucumbers, tomatoes, green peppers and corn.
 
23.  Don't exercise much at all, but when I was younger I got lots of exercise.
 
24.   Maybe 1.5  years prior to my diagnosis (12/14/07) was the end of several awful years taking care of both my aging parents. So very, very stressful, I went into a very deep depression and could not stop crying. Although I was put on anti depressents, this went on for several years.
 
25.  Growing up prior to gas heat we used coal and oil. Since 1978 have used a fire place with wood and also the fake wood logs.
 
 
My Treatment: (starting 2/5/08); dose dense, aggressive, every 2 weeks 4 sessions, A tweeked form of AC+T. 
 

·        = Dose dense Epirubicin.I will also be getting anti nausea with the chemo, day after the shot for blood cells (neupogen

after 4 sessions a 1 month break then: 
 
         35 sessions of radiation, last several will be localised
 
another break (I think) then:
 
     Once every three weeks (3 weeks on 1 week off) for 4 cycles I will get Taxotere and if my body can handle it he’ll include a carboplatin
 
Now, on a good note:  My Dr. feels this can be cured, both of my oncs have said that. They said you have to be very aggressive in your treatment and your schedule of treatments.  My onc told me yesterday that he's never been this aggressive with anyone before, but it's 3-. I will have my live long allotment of the Adriamycin group of drugs, when finished. Gosh, I sure hope they are right.
 
I have heard that Dr. Robert Livingston, at the U of AZ in Tucson is the worlds best breast cancer doctor (per Breast Watch), perhaps he'd be interested in "our" survey. If he is the best, then I'd think he'd be interested in what we are doing and what we want to accomplish.
 
 
 
Cookie


Posted By: Cheryl51
Date Posted: Feb 06 2008 at 3:47pm
Pam, thanks for that reminder.  I think it would probably be a good idea to gather all these records. 
My breast doc ordered another, even stronger, antibiotic for the breast symptoms and his office is now working on scheduling an MRI to get a look at it.  I'm just waiting to hear about that. 
Feeling tired but ok. 
Best,
Cheryl51


Posted By: trip2
Date Posted: Feb 07 2008 at 6:18am
Oh Cheryl, I sure hope the stronger antibiotic will work for you.
 
I bet you are feeling tired, this all works on our minds and adds stress.
More doc runs, tests.  Let us know when you are getting your mri.  Everything will probably be fine so once you have this then you will feel better.  I admire you for standing up and getting answers.
 
Shame on me, when I saw my Onc a couple of weeks ago I complained of gastro problems and a backache at my waist so he scheduled me an appointment with a gastro doc and a mri.  I cancelled the mri, figured it was arthritis and didn't want to spend the co-pay. Disapprove I am now regretting my decision and if I'm still having this problem next time I see my Onc I'll go for the mri.  A harmless explanation of what ails us may mean a big relief in our minds.
 
Hang in there and stay with us,Hug


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Cheryl51
Date Posted: Feb 08 2008 at 8:00am
Pam...don't be critical of yourself for cancelling the mri!!!!!!  It's understandable that you didn't want yet another test with yet more $$$ going out.  We're all going through enough without the added stress of being down on ourselves.  (I do, however, recognize that trait in myself, too.)  Wish I were in the neighborhood to buy you a cup of tea...
 
My blood tests all came back negative.  Low white cell count but that was good in terms of any infection.  So now I called the doc to see if I have to continue taking all these anitbiotics- YUK.  Still waiting for the mri to be scheduled.  I had to get assertive again with the nurse as she "hadn't gotten to the mri request because she'd been so busy."  I hate to be seen as a you-know-what...but I won't back down on these things. 
 
Have a good day and take care,
Cheryl51


Posted By: doleary
Date Posted: Feb 12 2008 at 7:38pm

My Story – Well, I’m just about to turn 35 and I was recently diagnosed with Stage 3B triple negative, IDC. It was a shock especially since there is no family history of breast cancer and up until 2 years ago there was no history of any type of cancer in my family. I found the lump when I was doing my monthly BSE in August of 2007. I’ve been very diligent with BSE’s since I found a lump in 2003 just after my first child was born (which turned out to be a cyst caused from breast feeding). I called my OB/GYN immediately and he saw me that afternoon. After doing an ultrasound he assured me that it was just a cyst but if it would make me more comfortable he could do a needle aspiration to let out the fluid. I said please do, but when he aspirated no fluid came out. He managed to pull out some cells and tissue, so he told me he would send it out for a biopsy but he was still sure it was a cyst. He then set me up to consult a general surgeon in case I wanted to get the cyst removed.

A week later I went to see the general surgeon alone because I believed in my gyn’s assurance. I was told that the biopsy was positive and my world dropped out beneath me. He then told me not to worry, breast cancer is very slow to progress and all I needed was a lumpectomy and maybe some radiation to follow-up, etc. He then scheduled me for a mammogram and an mri. The next day I took the mammogram and it came back negative. But I had to wait for the mri because it could only be done within 14 days of my menstrual cycle. I called the general surgeon two weeks after my initial visit and told him that the lump had grown and had become painful and would like to have him exam me. My mri wasn’t scheduled for another 3 weeks and I was concerned. He said it was impossible and it was just my period. A week after that, I started my period and found the two lumps under my armpit. I called him back and he brushed me off again and told me to wait for the mri. I then decided to call the radiology department myself and was in the next day for my mri. I called the surgeon the day after and told him I wanted to see him before surgery to discuss getting a mastectomy. He told me there was no way I would need a mastectomy (of course he hadn’t viewed my mri yet). He called me an hour later and told me that I would need a radical with reconstruction so he was referring me to a general surgeon at Dartmouth Medical. 

It was only until I saw the surgeon at Dartmouth was I taken seriously. I still remember his words, “Having surgery now isn’t going to save your life, we need to kill the cancer first.” That same day I was sent down for a core biopsy, a mammogram, and another mri. A week later, I met my oncologist and was given the news that my cancer was triple negative and the lymph nodes came back positive. By the time I had my first chemo treatment I had 2 lumps in the breast one at 4.5cm the other at 4cm and 2 lumps under the armpit both measuring in at 2cm.

This was in September and I have been through 6 TAC treatments at 3 weeks apart. My oncologist still has not given me a “prognosis” but the lumps in the breast were no longer detectable by treatment number 4 and the day of my 6th treatment we could no longer detect the lumps under my armpit. I will be having my mastectomy on March 3rd. I’ve opted for a bi-lateral due to my diagnosis and my mental health. I’m prepared mentally for when it will metastasize to other parts of my body but I could never forgive myself if it re-occurred in the other breast for not doing something about it now. I’ll then follow surgery up with 33 radiation treatments that will encompass from the middle of my neck/top of shoulder blade down and around to 3 inches below my armpit. My first round of PET, CT, and Bone scans came back negative except a "hot" area near my ovaries but my oncologist says it is common and thinks it is cyst related not cancer. So for now I can’t wait until the end of May to breathe a sigh of relief and take a break from doctors and medication. But more than likely I will be battling this demon again a few years from now. But I'll keep battling it, I've got 2 beautiful children and a wonderful husband to stay alive for.

Here are the answers to the survey questions:

 

1/ How old are you? Will be 35 on the 27th

2/ Where were your born and where have you lived? I was born in Seattle, WA and lived in Federal Way and Kent. I’ve also lived in Oldtown, Idaho; Chappaqua, NY; Greenwich, CT; Belgrade, MT; Las Vegas, NV; and currently Keene, NH.

3/ What is the specific name of your type of cancer other than it being triple negative? I have IDC, Stage 3B with mets to 2 axilla nodes

4/ What is your blood type? A+

5/ Are you a drinker or a smoker? I am a casual drinker (wine mostly), and a former smoker of 8 years. I quit in January of 2001.

6/ Has anyone else in your family had any kind of cancer? Oddly enough the only other person in my family is my maternal uncle who shares the same birthday as me was dx 2 years ago with colon cancer and it has now mets to liver and kidney.

7/ How many pregnancies have you had? 3 (1 miscarriage, 2 live births)

8/ What childhood diseases have you had? Measles (3x) and Chicken Pox

9/ Did you have any symptoms of your breast cancer? I had painful lumps in both breast and armpit.

10/ How was your cancer first discovered? It was self discovered during my monthly BSE. No lump was present in July then in August I found a lump about 1.5cm within 3 weeks of finding the lump it had grown to 4cm plus another cropped up right beside it and to grew to 3.5cm pretty much overtaking my left breast. Also within 3 weeks of finding the lump in the breast I then had 2 lumps approx 2cm each appear under the armpit.

11/ Have you had a re-occurence in the past 2 years and if so, where did it re-occur? N/A but I’m opting for a bi-lateral to reduce my chanced of re-occurrence in the right breast.

12/  How often did you have mammograms before you were diagnosed? – My first mammogram was done 4 years prior when I found a lump in the right breast. It was dx as cyst caused by breast feeding. No other mammos were done until recent lump was found and it came back negative even though biopsy of aspirated cells came back positive.

13/ Have you ever had a traumatic blow to your body and where was it? I was a klutz as a kid. I ran head on into a tree sledding at age of 5. I fell from top of bleachers at age 7. I was kicked in chest by my horse at age 8. I was thrown into a tree from a horse at age 10.

14/ Have you ever had your hormones checked Prior to being diagnosed? No

15/ Before you were diagnosed, what medications were you on? None, I’ve always hated taking meds.

16/ Have you been prescribed antibiotics more than once in a year before your were diagnosed? No

17/ Have you ever been on birth control?  For how long?  What kind? I have been on BC since the age of 12 for cystic ovaries. Every 3 years it was changed because my ovaries would acclimate, each new BC was a lower estrogen level. The last kind was Loestrin Fe 1/20. I’ve been off the pill since July of 04 because my blood pressure was being affected by it.

18/ If you have children, did you breastfeed?  For how long? I breast fed for 3 months with both my children.

19/ Do you have dense breast tissue? Very dense

20/ Have you tested positive for BRCA1/2? I have not been tested. No familial history.

21/ Exercise and diet? Mostly sedentary, prior kids was a regular gym goer, post kids lucky to get in 1 day of cardio. Also before dx had a desk job. As for diet, prior to Aug06 it consisted of lean proteins and veggies. Since Aug06 (moved in with in-laws to help care for aging father-in-law, mother-in-law does all cooking) I have gained 20lbs due to eating red meat and starches (unfortunately a staple in my mil’s kitchen).

22/ Weight? 190 prior to chemo, 200 post chemo. Ideal weight is 140.

 



-------------
Dani 35yrs
Dx Aug 07
IDC, Stage 3B
Triple Neg
2 Lymph Nodes Pos
TAC 6x Oct07-Feb08
Mast - Bilateral Mar08
Rad - 33x Apr08-May08


Posted By: trip2
Date Posted: Feb 13 2008 at 4:01am

Hi Cheryl, wish you were in the neighborhood too, would love to have tea with you.Smile  I'm so glad you don't have an infection.

 
It's good to hear the blood tests were negative, low white cell count.
How long were you supposed to take the antibiotics? 
 
I hope you get that mri soon, yes push & push, I totally agree.Thumbs%20Up  Be seen as a "you-know-what", I think that is the way to go.
That's hard on you, I know you are worried and need the test right
away so you can have an answer.  Stress ,Stress, we don't need more of that. 
 
I did change my mind on my mri and called to have them schedule one for me.  It is next week.  Went to the Gastro guy Friday, he gave me antibiotics, think he was lost.  Went to my family Doc Monday and he is sending me for a ultrasound on my upper right quadrant tomorrow. I told him I know something is wrong w/me and I need it fixed!  LOL  I don't like spending the money right now but getting tired of feeling lousy.  Have had a head cold for the last several days too.Dead  But I'm up and at em again today.  Probably getting an ulcer from stress & taking all these pills they throw at ya!
 
Good luck Cheryl, let us know,Hug
 
 
 
 

 



-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Cookie
Date Posted: Feb 13 2008 at 6:20am
Friends:
 
Here is a great website. It will give you statics, information and everything you want and don't want to know. It is geared to each individual. Take their "test" and get informative answers and suggestions. Lots of fQ and A too.  It is by Johns Hopkins.
 
https://www.cancerfacts.com/Secure/InterfaceSecure.asp?CB=10 - https://www.cancerfacts.com/Secure/InterfaceSecure.asp?CB=10
 
Cookie
 


Posted By: Cheryl51
Date Posted: Feb 13 2008 at 4:05pm
Hi Pam,
 
Good for you to push on for that mri.  Even though it's stressful to take those tests, it's always better to know what's up. 
 
My mri is this Friday.  I was actually hoping that an infection would show up on the blood tests as that would be a "benign" answer to these symptoms.  I finish my nearly 2 week round of antibiotics tomorrow and nothing has changed.  My breast is swollen, sore, red..some of the pains are now starting to radiate into my armpit and up into my chest.  I'm pretty scared about the possibility of inflammatory breast cancer....trying not to think too much.  This is when I'm glad to work as a therapist and concentrate on others...that helps. 
 
I hear ya on the docs not seeming to have a clue.  I really like my breast guy but he isn't the best on diagnosis.  In fact, he first reassured me that I had a fibroadenoma and there was nothing to worry about.  Since that first diagnosis, I have been a bit nervous.  Like you, I feel that I knew something wasn't right with my body. 
 
Keep on truckin', Pam.  Be sure and say when your mri is and how it goes. 
Take care,
Cheryl51


Posted By: trip2
Date Posted: Feb 14 2008 at 2:52am
Cheryl, hope all goes well today and prayers said that the test results are b9.Hug
I know you are worried, wish I could say something to help you feel better.  It's a good thing you have your job to distract you for a few hours anyway.  That's good you are getting your mri today so you won't have to wait a long time for that and hopefully get a quick answer on your results.
 
Be thinking about ya today and sending warm thoughts,


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Cheryl51
Date Posted: Feb 15 2008 at 2:02pm
Dear Pam,
 
My doc called me about an hour ago to tell me that the MRI was clear!!!!  ClapHooray and phew...He feels that my symptoms are likely due to the intense radiation treatment I had.  He will do a skin biopsy on Thursday of next week just to completely rule out IBC(which doesn't show up on an MRI) but thinks that would be an extremely rare occurance. 
 
Thank you for your prayers and all the warm wishes and thoughts.  It really matters
 
Hope all is well with you. 
Warmly,
Cheryl51



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