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long term TN survivor story please

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Topic: long term TN survivor story please
Posted By: newalex
Subject: long term TN survivor story please
Date Posted: Jul 31 2009 at 3:20am
We are all scared as newbies and your long term suvivors please come to post and offer encouragment. Your story mean so much to the newbies and please come and help !



Replies:
Posted By: sharon rereg
Date Posted: Jul 31 2009 at 5:24am
Hi Newalex--I think I replied to you just a little while ago, so am "old news", but I have a recent piece of positive news. I saw my onc for the 6 month check up this week and she "graduated" me to yearly check-ups. She says I'm cured. Her experience is that if TN is going to morph into distant mets, it always does it within 4 years, and usually much sooner, being as aggressive as it is. It still can pop up as a new breast primary or recurrence in breast tissue. As you'll see from my signature I did the full "slash, burn, poison" routine, so I don't have much breast tissue left to worry about. That's a very personal decision, though.

I hope this helps.

Sharon

-------------
dx 03/05 multi focal TN, lymph involvement.BRCA- 4 dd AC, 4 biweekely taxol, bil mast 08/05, 38 rads. NED


Posted By: newalex
Date Posted: Jul 31 2009 at 6:14am
Sharon
So good for you. You must be really happy. I hope I will be like you too. What was your dx and how many nodes were you positive?


Posted By: sharon rereg
Date Posted: Jul 31 2009 at 8:50am
Dear Alex--I never knew exactly how many nodes, because I did neo-adjuvant chemo. But there was one palpable and positive at the time of biopsy.

Sharon

-------------
dx 03/05 multi focal TN, lymph involvement.BRCA- 4 dd AC, 4 biweekely taxol, bil mast 08/05, 38 rads. NED


Posted By: newalex
Date Posted: Jul 31 2009 at 8:55am
hi Sharon
Did you have any family history? How old were you at dx? Was the tumor grade 3?


Posted By: Jessie
Date Posted: Jul 31 2009 at 11:10am
Well Sharon,
 
I'm catching up with you !!   My year from hell was in the spring of 2006.  Couldn't take the chemo due to complications, but my bil mastectomy seems to have done the trick.  I've had scans every 6 months and been NED every time !!   Working toward my 4 yr anniversary now..................  
 
Having no treatment other than the mastectomy was scary and really concerned my doctors, and I can't say I lead a charmed life.  It must be that all my cancer cells were localized in the breast --- or maybe all the vancomycin I took for the MRSA killed them -- almost killed me !  LOL
 
I feel sooooo fortunate to have gotten this far.  Just this week I compared my pathology findings to those of someone else with ER+,PR+ BC and my prognosis was much, much worse.  It's amazing I'm NED.   Thank you Lord!  Thumbs%20Up
 
So NewAlex, I wish you all the very best.  Please post your signature to let us know your TNBC details and experience so far --- we love to know what's going on.  I'm proof that one CAN survive even when the treatment is compromised.
 
Hugs,
Jessie


-------------
IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!


Posted By: rena
Date Posted: Jul 31 2009 at 4:55pm
Hi Alex! The ladies are probably tired of hearing my story by now, but you were looking for encouragement, and I've got some to give. I was diagnosed in 1986 with ER/PR-negative breast cancer. There was no HER test back then, so I was not labeled "triple negative." But my oncologist is certain that I was since I fit the profile: 37 years old and BRCA2-positive. I had 22 positive lymph nodes and am coming up on 23 years cancer-free. I suspect that there are many long-term survivors like me, who don't know that they were triple negative because that label didn't exist way back when. There is lots of hope out there and a lot of good, healthy life to look forward to. Take care, Rena

-------------
Diagnosed 9/86. 1 cm tumor, 22 positive lymph nodes. CMFVP chemo, weekly for one year. 7 weeks radiation. BRCA2-positive. Multiple attempts at reconstruction (three's a charm)


Posted By: kmartin
Date Posted: Jul 31 2009 at 5:27pm
Hi NewAlex,
 
My encouragement comes from knowing 2 five year survivors...my boss chose to have lumpectomy, CT and RT, and my aunt had bilat mastectomy and then AC, T, and RT...both are 5 years out and no recurrance at all.
 
Kathy


-------------
Found Lump, 2/8/08
Bx IDC, Stage 2, Grade 3, TN
Lumpectomy, axillary node dissection 3/11/08
4/33 positive nodes
TAC x 4, AC x 1
RT x 33-finished 10/14/08
BRCA 1 & 2 Negative


Posted By: newalex
Date Posted: Jul 31 2009 at 10:49pm
I tried to put my dx at signature but I dont know where and how to do it.


Posted By: newalex
Date Posted: Jul 31 2009 at 10:53pm
Hi Kathy
Was your boss and aunt also TN? It must be good to know them personally to chat and get encouragment.
My dx was 1 cm tumor TN and 1mm micromet in one sentinal node. I had mast. and dd EC and 12 weekly taxol and carboplantin and then radiation.

I often hear ER positive women with early stage live 20 yrs or longer but for TN I do not hear so many long term survivor stories. TN dx scares me.


Posted By: CarynRose
Date Posted: Aug 01 2009 at 9:24am
I don't know if Icount as a long term survivor.   I keep asking my doc from when should I start counting.
 
I was first dx'd in June  2003, so I guess I'm a 6 year survivor.  Of course, I am Stage 4 and I live with cancer everyday.  At the moment, I'm dancing with NED and the stable boy (thank G-d).
 
Is 6 years good for TNBC, Stage 4?  I don't know.  But I have no intention of leaving here anytime soon (please G-d).
 
Caryn
 

Caryn


-------------
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10


Posted By: newalex
Date Posted: Aug 01 2009 at 11:26am
hi Carynrose
May I ask what kind of tx did you get for your orginal dx in 03?


Posted By: CarynRose
Date Posted: Aug 01 2009 at 2:50pm
I got CMF.  Cytoxan, Methotrexate, and 5Fu.  It was 'gentler' and my oncologist felt that I'd be cured after the lumpectomy, chemo and a breast irradiation.
 
Turns out, that was probably a good thing in that I didn't get Adriamycin as my heart is still relatively healthy.
 
Of course, after 4 years in remission, I had a recurrence, but I believe that is because instead of a full lymph node removal, they just did a sentinal node biopsy and evidently there was more than one node. 
 
That's why I believe you have to be aggressive with TNBC, especially if you are BRCA+ like me.
 
Cheers,
Caryn


-------------
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10


Posted By: jody
Date Posted: Aug 01 2009 at 6:29pm
I am aware of two women both nurses in Southern California that had tnbc.  One was diagnosed 12 years ago (and since verified that hers was in fact TN), the other 7 years ago.  Both women are cancer free,  Unfortunately I do not know what their stages were at diagnosis, they are actually co-workers of my cousins who is also a nurse.

As for myself, I am no where near long term, however it has been 1 yr and 3  months and so far so good....


-------------
diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08       La Verne, California


Posted By: kmartin
Date Posted: Aug 14 2009 at 5:35am
Yes, both were dx with TNBC...and neither has had any recurrence.
 
Sorry for the delay in response time,
 
Kathy


-------------
Found Lump, 2/8/08
Bx IDC, Stage 2, Grade 3, TN
Lumpectomy, axillary node dissection 3/11/08
4/33 positive nodes
TAC x 4, AC x 1
RT x 33-finished 10/14/08
BRCA 1 & 2 Negative


Posted By: wrsmith
Date Posted: Aug 14 2009 at 11:02am
I, too, want to know about long term survivors.  When I was diagnosed and even all thru treatment I was OK.  Didn't worry about anything - just dealt with it.  Now, it seems, I am obsessed with the beast recurring.  I have a cough and back ache and am sure it is now in my chest.  Seems like I want to have every test known to man now.  If it is back I want to know!  But there is no real reason to expect that it is back.  I think I am working it all up in my mind!  What is wrong with me?!
 
Diagnosed in November 2007 and I had a lumpectomy, completed chemo and rads by May 2008.  1.2cm, IDC, Stage 1b, TriNeg, Grade 3, node neg
 
Absolutely no reason to worry!  I know......this too shall pass.


Posted By: Lillie
Date Posted: Aug 14 2009 at 1:07pm
Hello wrsmith & newalex,

Newalex, I am into my 4th year in remission. I was dx 6/9/06 with TN breast cancer. 2 cm tumor, stage 2b, grade 3, had left mastectomy 6/15/06 with sentinel + 2 nodes removed. Cancer cells were found in sentinel node so I had 9 more nodes removed on 6/22/09. Those 9 nodes were cancer free. On August 8, 2006 I started chemo. 4 dose dense bi-weekly treatments of cytoxin and adromician (sp), followed by 4 dose dense bi-weekly treatments of taxol and gymzar. The gymzar was because of a clinical trial I participated in. I have been through all of the stress both of you are describing, but if we are to have any quality of life, we have to let go of most of the stress.

wrsmith, my back also hurts, "bad at times". But I have scoleosis so my back hurt, bad at times, before I knew about the cancer in 2006. Same thing with a cough. I smoked for many years and have beginning lung issues (not cancer)(go figure). Sometimes my mastectomy scar feels strange and painful. I'm sure the "Big C" is back, but it is just a tightening of the tissue along the scar. A warm shower and massaging the tissue relieves the pain.   All of my symptoms get worse when I am stressed about them. I can go to bed at night, get comfortable and sleep all night. I really feel if the back, scar, lung problems were an indication of trouble, I would not be able to rest at night.

My doctors assure me that I am in remission, based on touch (no lumps), sight (clean scans), hearing (good breathing capabilities and strong heart). I have been checked every three months since my treatments ended on November 15, 2006. I will now start on a every 6 month schedule of follow-up exams.

I hope this has helped a little to ease your fears. I know it helps me when I am stressing and read the up-beat posts of so many women and men on this site.

Love in Christ,

Lillie

-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED


Posted By: kirby
Date Posted: Aug 14 2009 at 4:34pm
wrsmith I post on occasion. My stats are listed below my name. I was dx before they named TN. I had 1/2 the chemo most are now getting. I thought things seemed simpler, no port, no emend, decadron etc. But also no dose dense [after my time] and snb was quite new.
 
Good luck to you.  I am almost 9 years out ! dx @ age 44.


-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: Sunday22
Date Posted: Aug 14 2009 at 8:44pm
Hi, I was four years away from my original dx when my cancer showed up again in the same breast. The first one was tnbc. This one (still in my breast) from the biopsy, seems to be "weakly er positive", but my onc calls it a recurrence.
So four years until recurrence or new cancer. If it is a new cancer, does this mean I'm still in remission from the first one? I am going nuts.


Posted By: MaryTwinA
Date Posted: Aug 15 2009 at 6:40am
Hello everyone, I am new to this site.....just signed up today.  I was diagnosed with TNBC back in february...and had a single mastectomy the same month.  I have been undergoing chemotherapy since March and have 4 more treatments left.  I was on adriamycin and cytoxin for 3 month and now i am on Taxol.  Lately, i have been concerned about a recurrence when i finish my treatments, however, i do not dwell on it, nor do i tend to get to negative.....God's Will, not mine.......what will be , will be....
 
That said .....i was wondering.......what percent of TNBC patinents have a recurrence.....is there a percent  for the first year, 2nd year etc....  Just wondering. 
 
This seems like a great information site as well as an opportunity for making friends. 
 
Thanks ahead of time!
Mary in Montana


Posted By: SagePatientAdvocates
Date Posted: Aug 15 2009 at 7:27am
Dear newalex,

My daughter was dx with TNBC in August 2004. She had a quadrantectomy.
Then we found out she is BRCA1+, a genetic mutation that predisposes women to an 85% chance to get breast cancer and a 45% chance of getting ovarian cancer.

Mary, I do not know what the recurrence figures are for non-BRCA mutation women but anecdotally, looking at the "signatures" of women on this site they are high.. with a BRCA mutation you have a 50% chance for a recurrence or new primary which is often in the contralateral breast.

Have either of you had genetic counseling/testing for the BRCA mutation?
85% of BRCA1+ women, who have breast cancer, have TNBC. The converse is not true but particularly with early-onset disease it is important to consider genetic counseling..

recognizing that the n=small in this study I think it is important.

": BMC Cancer. 2009 Mar 19;9:86. Links
The prevalence of BRCA1 mutations among young women with triple-negative breast cancer.

Young SR, Pilarski RT, Donenberg T, Shapiro C, Hammond LS, Miller J, Brooks KA, Cohen S, Tenenholz B, Desai D, Zandvakili I, Royer R, Li S, Narod SA.
Women's College Research Institute, Department of Public Health, The University of Toronto, Toronto, Canada. sryoung37@aol.com
BACKGROUND: Molecular screening for BRCA1 and BRCA2 mutations is now an established component of risk evaluation and management of familial breast cancer. Features of hereditary breast cancer include an early age-of-onset and over-representation of the 'triple-negative' phenotype (negative for estrogen-receptor, progesterone-receptor and HER2). The decision to offer genetic testing to a breast cancer patient is usually based on her family history, but in the absence of a family history of cancer, some women may qualify for testing based on the age-of-onset and/or the pathologic features of the breast cancer. METHODS: We studied 54 women who were diagnosed with high-grade, triple-negative invasive breast cancer at or before age 40. These women were selected for study because they had little or no family history of breast or ovarian cancer and they did not qualify for genetic testing using conventional family history criteria. BRCA1 screening was performed using a combination of fluorescent multiplexed-PCR analysis, BRCA1 exon-13 6 kb duplication screening, the protein truncation test (PTT) and fluorescent multiplexed denaturing gradient gel electrophoresis (DGGE). All coding exons of BRCA1 were screened. The two large exons of BRCA2 were also screened using PTT. All mutations were confirmed with direct sequencing. RESULTS: Five deleterious BRCA1 mutations and one deleterious BRCA2 mutation were identified in the 54 patients with early-onset, triple-negative breast cancer (11%). CONCLUSION: Women with early-onset triple-negative breast cancer are candidates for genetic testing for BRCA1, even in the absence of a family history of breast or ovarian cancer."

-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: Suzanne
Date Posted: Aug 15 2009 at 8:06am
Newalex, did anyone give you the info. you needed to add a signature to postings?  If not, this is what you do:
 
Click on "settings", listed above.  (You have to be logged in to see "settings".) Then click on "profile information".  Scroll down until you see "signature".  Add the information you want to the box to the right.  Then click "update".  That should do it.
 
Suzanne


-------------
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: newalex
Date Posted: Aug 15 2009 at 12:26pm
steve
Do you mean the recurrence for TN is high with BRCA mutation based on signature reading?

How about recurrence for non-BRCA mutation and early stage?
Based on looking at the signature here, it may seem high. Is it because people tend to come on to these support boards when they have a problem either currently dealing with it or a recurrence?

I read once a study someone posted in another site, they say for stage 1 to 3 TN, overall rate of desease- free rate is like around 67%. With node negative TN it is 85% based on a Japanese study, not statistically significant comparing to ER+. That's all I found. TN is a recent term and they don't have long studies for it.


Posted By: Lillie
Date Posted: Aug 16 2009 at 1:01pm
Hi newalex,

I just sent you a PM but it was rejected. Your box is full. Please make room and notify me.

Love in Christ,

Lillie

-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED


Posted By: SagePatientAdvocates
Date Posted: Aug 16 2009 at 2:01pm
Dear newalex,

it is my understanding that if a woman has breast cancer and she is BRCA1+
or BRCA2+ there is a very large risk of recurrence or mets. Something like 50%. It seems that 85% of women with the BRCA1+ mutation who have breast cancer have a TNBC.

It is also my understanding that the first three years(and certainly five years) after diagnosis is the highest risk period for women with TNBC. Here is an abstract of a study that mentions that.

: Clin Cancer Res. 2007 Aug 1;13(15 Pt 1):4429-34. Links
Comment in:
Clin Cancer Res. 2008 Jan 15;14(2):618; author reply 618-9.
Triple-negative breast cancer: clinical features and patterns of recurrence.

Dent R, Trudeau M, Pritchard KI, Hanna WM, Kahn HK, Sawka CA, Lickley LA, Rawlinson E, Sun P, Narod SA.
Department of Medical Oncology, Sunnybrook Health Sciences Center, University of Toronto, Ontario, Canada.
PURPOSE: To compare the clinical features, natural history, and outcomes for women with "triple-negative" breast cancer with women with other types of breast cancer. EXPERIMENTAL DESIGN: We studied a cohort of 1,601 patients with breast cancer, diagnosed between January 1987 and December 1997 at Women's College Hospital in Toronto. Triple-negative breast cancers were defined as those that were estrogen receptor negative, progesterone receptor negative, and HER2neu negative. The prognostic significance of triple-negative breast cancer was explored. RESULTS: The median follow-up time of the 1,601 women was 8.1 years. One hundred and eighty of 1,601 patients (11.2%) had triple-negative breast cancer. Compared with other women with breast cancer, those with triple-negative breast cancer had an increased likelihood of distant recurrence (hazard ratio, 2.6; 95% confidence interval, 2.0-3.5; P < 0.0001) and death (hazard ratio, 3.2; 95% confidence interval, 2.3-4.5; P < 0.001) within 5 years of diagnosis but not thereafter. The pattern of recurrence was also qualitatively different; among the triple-negative group, the risk of distant recurrence peaked at approximately 3 years and declined rapidly thereafter. Among the "other" group, the recurrence risk seemed to be constant over the period of follow-up. CONCLUSIONS: Triple-negative breast cancers have a more aggressive clinical course than other forms of breast cancer, but the adverse effect is transient.

............................

re: long term survival-my daughter is now almost five years NED...she was dx with TNBC in 2004...

all the best,

Steve

-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: MaryTwinA
Date Posted: Aug 16 2009 at 6:34pm
I have not had genetic testing done.  didn't know  what the benefit of it would be.  I was jsut wondering what the chances are of a recurrence if i didn't do the genetic testing.  thanks for all the responses so far, although i am new to the site and it is  hard for me to follow. 


Posted By: sadierose2
Date Posted: Aug 16 2009 at 7:15pm
Hi Alex,

I am five years out and all of my rechecks have been clear.

Warmly,
Sadie


Posted By: kirby
Date Posted: Aug 16 2009 at 8:11pm
MaryTwinA
 
Benefit of genetic testing is that it is another tool to empower you with clearer decision making for not only your present and future but for relatives of same link.


-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: jody
Date Posted: Aug 16 2009 at 8:27pm
MaryTwinA
 
  You are also more likely to get your insurance company to say yes to any tests that you would like to have done if you test positive for the gene.


-------------
diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08       La Verne, California


Posted By: SagePatientAdvocates
Date Posted: Aug 16 2009 at 8:41pm
Dear MaryTwinA,

well taking a wild guess here but are you a twin? identical? well if you tested and were found to have the gene mutation your twin if she was identical would have the mutation as well...and you inherited the gene
from either your mom or dad so they should test(generally the first to test would be the one with breast or ovarian cancer directly or in their family tree) as well to ascertain their risks..

by the way my daughter with TNBC has a twin brother so he is at a 50-50 risk to inherit the mutation from me as my daughter did. Also, lots of times the mutation is "hidden" in the dad because often the dads don't get cancer and die of something else...I am 65 and I have never had cancer (that I know of).

if you don't test, your risk is the same...it is what it is....without testing you don't have as good an idea of what your risks are..

right now, in my opinion, without testing you don't have as good an idea of what your risks are of recurrence as when you have tested...

if you have any questions please ask away or send me a PM...the best person, however, to speak to about this though is a Certified Genetic Counselor..

There are women who test before they have cancer if they know e.g. their mom or sister had TNBC and is BRCA1+. They want to have the information because at some point they may consider risk-reducing surgeries..

all the best,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: newalex
Date Posted: Aug 16 2009 at 10:19pm
Steve
I don't know if one has BRCA gene means she has higher chance of recurrence. Maybe. How about those without BRCA gene? Do you know?
I just recall I read a study in Japan and italy, they say node negative TN have similar mets free rate as those ER +. They did not break down to BRCA or not just a total.

I agree after 4 yrs, TN rarely has a recurrence or mets but ER + can have a recurrence even after 20 years.

My doctor showed me a Anderson study that TN has a bit higher recurrence risk than ER+ during the first 4 years but my doctor said the difference is not that high. So he considers TN early stage risk is to be similar to those ER+ woman. That's what he told me. But ofcourse for stage 3 TN has much higher risks than ER+ .


Posted By: Sunday22
Date Posted: Aug 17 2009 at 6:39am
I was four years NED when my cancer grew overnight. The original one was TNBC. The onc said this new one is a local recurrence, and it is also TNBC, but very slightly er positive. I'll know more after the bmx.


Posted By: sfcindy
Date Posted: Aug 17 2009 at 9:12am
Can someone tell me what NED stands for? Cindy


Posted By: newalex
Date Posted: Aug 17 2009 at 9:12am
sunday22
what kind of dx and tx you had the first time?


Posted By: newalex
Date Posted: Aug 17 2009 at 9:15am
sunday 22
Are you Adnerb in breast cancer.org?
I read Adnerb in breast cancer.org has same as you, first TN and second time weakly ER+ after 4 yrs apart. Just wonder. I post there too on that site. Do you?


Posted By: kirby
Date Posted: Aug 17 2009 at 9:16am
NED = no evidence of disease
 
the term currently used rather than remisssion


-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: newalex
Date Posted: Aug 17 2009 at 9:17am
Kirby
Was your orginal dx an IDC not medullary?


Posted By: sfcindy
Date Posted: Aug 17 2009 at 9:39am
I don't know if you are asking me (Cindy) but I updated my profile with my details. I think they will now come with my signature. I haven't been on this site much and am still getting the hang of it. Let me know if this message comes with my dx details. thanks Cindy

-------------
Cindy, 60, dx: 4/09 st 1, gr 3, chemo 5/09 - 7/09 in clin. trial at Stanford: gemcitabine, carboplatin & BSI 201 (PARP inhibitor) lumpectomy 8/10/09, 3 nodes, all neg. Add'l chemo recommended.


Posted By: sfcindy
Date Posted: Aug 17 2009 at 9:40am
thanks Kirby.

-------------
Cindy, 60, dx: 4/09 st 1, gr 3, chemo 5/09 - 7/09 in clin. trial at Stanford: gemcitabine, carboplatin & BSI 201 (PARP inhibitor) lumpectomy 8/10/09, 3 nodes, all neg. Add'l chemo recommended.


Posted By: kirby
Date Posted: Aug 17 2009 at 9:47am
newalex,
 
yes, my dx was IDC.  I am uncertain of what medullary is. I


-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: rena
Date Posted: Aug 17 2009 at 9:51am
Hi all. I have a question. Perhaps you'll know, Steve. I know that people with the BRCA1 mutation are more prone to triple negative. But does anyone know about the relationship between BRCA2 and triple negative? I've searched but not found anything online. Thanks! Rena

-------------
Diagnosed 9/86. 1 cm tumor, 22 positive lymph nodes. CMFVP chemo, weekly for one year. 7 weeks radiation. BRCA2-positive. Multiple attempts at reconstruction (three's a charm)


Posted By: SagePatientAdvocates
Date Posted: Aug 17 2009 at 10:04am
Hi Rena,

It is my understanding that the incidence of ER+ tumors is MUCH higher in BRCA2+ women...

As you know, I am not a doc but since ER negative tumors are more difficult
and since BRCA1+ women when they have breast cancer overwhelmingly (85%) have ER- tumors as part of their TNBC it seems to me that that may be a reason why BRCA1+ women have early-onset disease (both breast and ovarian cancer)....Unscientific theory on my part...here is a study from Spain (but with some knowledgeable BRCA experts like Barbara Weber) that alludes to that, in my unprofessional opinion..

"Clin Cancer Res. 2007 Dec 15;13(24):7305-13. Links
Estrogen receptor status could modulate the genomic pattern in familial and sporadic breast cancer.

Melchor L, Honrado E, Huang J, Alvarez S, Naylor TL, García MJ, Osorio A, Blesa D, Stratton MR, Weber BL, Cigudosa JC, Rahman N, Nathanson KL, Benítez J.
Human Genetics Group, Human Cancer Genetics Program, Spanish National Cancer Center (CNIO), Madrid, Spain.
PURPOSE: Familial breast cancer represents 5% to 10% of all breast tumors. Mutations in the two known major breast cancer susceptibility genes, BRCA1 and BRCA2, account for a minority of familial breast cancer, whereas families without mutations in these genes (BRCAX group) account for 70% of familial breast cancer cases. EXPERIMENTAL DESIGN: To better characterize and define the genomic differences between the three classes of familial tumors and sporadic malignancies, we have analyzed 19 BRCA1, 24 BRCA2, and 31 BRCAX samples from familial breast cancer patients and 19 sporadic breast tumors using a 1-Mb resolution bacterial artificial chromosome array-based comparative genomic hybridization. RESULTS: We found that BRCA1/2 tumors showed a higher genomic instability than BRCAX and sporadic cancers. There were common genomic alterations present in all breast cancer groups, such as gains of 1q and 16p or losses of 8ptel-p12 and 16q. We found that the presence/absence of the estrogen receptor (ER) may play a crucial role in driving tumor development through distinct genomic pathways independently of the tumor type (sporadic or familial) and mutation status (BRCA1 or BRCA2). ER(-) tumors presented higher genomic instability and different altered regions than ER+ ones. CONCLUSIONS: According to our results, the BRCA gene mutation status (mainly BRCA1) would contribute to the genomic profile of abnormalities by increasing or modulating the genome instability."

having said all of the above I think it is important to note that there are many BRCA2+ women who had TNBC and many BRCA1+ women who do do not...

nice to hear from you, my friend..

all the best,

Steve

-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: newalex
Date Posted: Aug 17 2009 at 10:46am
I read about 13% women with BRCA2 can have TN.


Posted By: rena
Date Posted: Aug 17 2009 at 1:14pm
Thank you, Steve and Newalex, for your replies. This is the year that my daughter is supposed to have genetic testing. I recall asking the genetic counselor whether, if, heaven forbid, my daughter should get breast cancer, she would be more likely to be triple negative since I am? She said not necessarily. I guess I'm jumping the gun. First, we have to find out whether she even has the mutation. My mother-in-law, whom I never met, died of breast cancer at age 52. Although she was not Jewish (I am, and I know that made me higher-risk for the mutation), my biggest fear is that my daughter will inherit "gene crap" from both sides. I guess you can tell that I'm a wreck just thinking about it. Sorry for rambling. Thanks again. Rena

-------------
Diagnosed 9/86. 1 cm tumor, 22 positive lymph nodes. CMFVP chemo, weekly for one year. 7 weeks radiation. BRCA2-positive. Multiple attempts at reconstruction (three's a charm)


Posted By: Sunday22
Date Posted: Aug 17 2009 at 2:22pm
Yes, I am Adnerb. Backwards for Brenda.


Posted By: Suzanne
Date Posted: Aug 17 2009 at 5:39pm
Hey, Rena,
 
I'm sorry you are worrying about your daughter.  Please try to console yourself with the knowledge that at least she is lucky enough to know what to watch for. 
 
I hope you are not being smoked out by the fires near Monterey.
 
Hugs,
Suzanne
 
P.S.  I met Rena in person in Monterey a few weeks ago while on vacation.  This website is wonderful for getting people together.


-------------
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: MaryTwinA
Date Posted: Aug 17 2009 at 7:03pm
Thank you Steve for the information and help.  Yes, I am an identical twin.  My twin sister NEVER even had a mammogram done until  I was diagnosed with TNBC.  She is concerned about her own health now and i suppose we should have the genetic testing done.  For now, i have 4 chemos to go (and have went through 14 chemos thus far)  Now that i am nearing the end of my chemo, i have had my moments or worry about a recurrence.  I believe they will check every 3 months by doing a physical exam, blood tests and a chest x-ray.  So, even though i have read that i have an increased risk for recurrence the first 5 years, i was wondering what percent chance i have for a recurrence.  I know i cant dwell on it, but was just wondering.  Also, if there are certain signs to look for to alert me that something may be wrong.    I am 45 with 3 children.  Thanks everyone for your help and support.
(and patience with me as i am new to this site)
Mary
 


Posted By: SagePatientAdvocates
Date Posted: Aug 17 2009 at 8:44pm
Dear Mary,

first off, I will have infinite patience with you and from what I have seen to date on this site I believe everyone here will as well. TNBCF is a warm, wonderful resource. Please don't be shy about asking your questions or expressing your concerns. There are no stupid questions about cancer- rather a cruel, stupid disease that we are all working to better understand. So please ask away..

I am not a medical professional so please do not take what I am going to say as medical advice.I would strongly suggest that you consider meeting with a Certified Genetic Counselor (CGC) for genetic counseling and perhaps genetic testing for the BRCA mutation. I am basing this recommendation on the fact that you had early-onset TNBC (defined as diagnosis when you are < 50 years old). A good CGC in my opinion is the best professional to speak with; a CGC is not only knowledgeable about the BRCA risks, and decipher your family tree, but also is trained to properly handle the psychological aspects of dealing with the angst of all of this...and is also the best-equipped professional to give you negative results, if G-d forbid that happens and talk about the next steps. In my experience a CGC will never tell you what to do, surgically, but point you intelligently and caringly to other BRCA knowledgeable professionals.

If in addition if you have a family history of breast/ovarian cancer on your maternal side or on your dad's side those are further markers, and reasons to test, as are prostate cancer and pancreatic, colon cancers and melanoma.

My guess is that the CGC might advise you to test and that result would hold true for your sister BUT if G-d forbid you are positive I would have your sister test as well to be 1000% certain because the consequences for your sister are difficult if you test positive. If you were to test BRCA1+ your sister would, almost certainly, be as well and she will have an 85% lifetime risk of getting breast cancer and a 45-50% risk for ovarian cancer...

You would not be testing just for your sister...you would be testing for your children and all the other relatives who may be afffected. If positive you got the mutation from your mom or dad so ideally if you tested they individually (probably the first to test would be the one with cancer in the family tree) would test as well for their own surveillance and the list of relatives goes on and on depending on the size of your family.

If you are BRCA1+ you are great risk for ovarian cancer. The BRCA mutations are simply awful...and Mary, everyone deals with the knowledge in different ways...doing absolutely no surveillance, doing surveillance, or having risk-reducing surgeries.

You already have TNBC....please consider seeing a CGC to find out what your recurrence risk or new primary risk is (if you are BRCA1+ it is about 50% from what I understand) and your ovarian cancer risk might be if you test positive..

No one will force you to test or take action if you get a bad test result but
my daughter and I strongly believe that "knowledge is power." The BRCA mutation is something ignored only at your own peril.

sorry if I have upset you..Perhaps you feel my message is too harsh. I am sorry I just have a problem sugar-coating such an important topic...I feel very strongly about what I wrote you because of all the lives in your family that may be involved..

My prayer is for you to test negative and if you are your sister and your children do not have to worry.

In re-reading this perhaps I wrote to strongly but I am too tired to refine it...if you are upset you have my apologies..

I hate TNBC. I hate the BRCA mutation..

good luck to you..

all the best,

Steve

-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: MaryTwinA
Date Posted: Aug 18 2009 at 6:50pm
Steve ....i appreciate your honesty.....no you were not too harsh.  I would rather hear it like it is.  It was strong enough that i want to have the genetic testing done.  I feel sometimes that my doctor is "too nice" and does not want to scare me when i ask questions.   Dont get me wrong...he is good and i think the world of him.  However, that being said, I dont know that he wants to say things to worry me.  I will check into the genetic testing.  My doctor did recomend having my ovaries removed.... based on the fact that TNBC is more likely to metastasize. 
Well,  i appreciate yourhelp and support.  Truly, i appreciate the timeyou have taken to try to help me.
Sincerely, Mary 


Posted By: SagePatientAdvocates
Date Posted: Aug 18 2009 at 7:15pm
Dear Mary,

WHEW!!!!

I don't think anyone realizes how I agonize over my posts and worry how someone may react. I am so glad you took things in the constructive way I meant them.

good luck to you and I will be praying for a negative result for you and your sister..

please let us know how things turn out.

all the best,

Steve

-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: newalex
Date Posted: Aug 18 2009 at 10:17pm
Mary
I don't understand why your doctor recommend you to remove your ovaries without knowing if you have BRCA mutation. TN BC does not metastasize to ovaries. With BRCA gene, you may have high chance to get ovarian cancer, thus why they recommend to remove ovarian if one has BRCA not other way around.


Posted By: Sunday22
Date Posted: Aug 18 2009 at 10:30pm
Good point, newalex.


Posted By: MaryTwinA
Date Posted: Aug 19 2009 at 9:12pm

My doctor told me that with my TNBC i was at risk of ovarian cancer and that it would be best to be proactive and have them removed.  Maybe since i had not had the genetic testing done, he thought this would be best?  i see him this friday and plan on asking about the genetic testing.  will keep you posted.

mary



Posted By: count65
Date Posted: Aug 19 2009 at 11:35pm
Hi Everyone,
I'm posting to let all the newbies know that I'm a 9 year survivor of TNBC!  I was dx.d in 12/2000 when I was 5 months pregnant.  Had a mastectomy a week later, and began AC treatment just  3 weeks following my surgery.   I completed 3 cycles of AC when my water broke at 35 weeks of pregnancy.   I delivered a very healthy, petite daughter vaginally and continued my 4th AC on my regular 3 week schedule.   I then began 4 taxol treatments at 3 week intervals followed by 35 radiation treatments.  I had reconstruction surgery 4/2002 using my own hip fat, tissue, muscle and blood source and I'm very pleased with my outcome.   Please feel free to ask any questions here or email me directly.
Cheryl


-------------
Dx 12/00 5mo pregnant,age 35
st IIB,IDC,high grade 4.3cm, 8/9 mbr score
DCIS,solid type,TNBC
1/10 pos nodes
AC&tax 4ea,35 rad
3 AC when pregnant
BRCA1&2 neg
daughter born 3/3/01
son 3/22/04


Posted By: diane1234
Date Posted: Aug 20 2009 at 4:21am
Cheryl,
 
Thank you so much for posting. Nine years, that is awesome. Thought chemo is hard on me. WOW...doing that while pregnant. Again THANK YOU
 
Love,
Diane


-------------
dx 4/09 at 36 yrs old. dbl Mast. 5/09. 12 weekly Taxol 4 FAC tri weekly. 32 rads completed 2/2010. Its Back 5/2010!! Chest wall, Mediastinal node, Lft mammary node and liver. Back on chemo.


Posted By: count65
Date Posted: Aug 20 2009 at 12:19pm

Hi Diane,

We're very fortunate to have such a site available to us!  I was poking around on the internet in January when I found this site.  I wasn't even told about triple negative when I was dx'd 9 yrs ago.  Perhaps it was something Dr's were just beginning to recognize/understand?  So even though I'm nearly 9 yrs out from dx  I'm new to this site and I really enjoy reading posts.
 
Our dx's appear similar in our signatures!
Take care and relax as much as possile
Cheryl 


-------------
Dx 12/00 5mo pregnant,age 35
st IIB,IDC,high grade 4.3cm, 8/9 mbr score
DCIS,solid type,TNBC
1/10 pos nodes
AC&tax 4ea,35 rad
3 AC when pregnant
BRCA1&2 neg
daughter born 3/3/01
son 3/22/04


Posted By: Autumn10182001
Date Posted: Aug 20 2009 at 12:33pm
Thank you for popsting 9 yr survival, I feel like I have been given a death sentence... and am having a very hard time thinking I will be here longer than a year.. especially since I do not believe I would do chemo if I became stage 4, as I can't see being on chemo for the rest of my life... right now it is stage iii... but it just appears that TN comes back to almost everyone.. Thoughts ?

-------------
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09


Posted By: diane1234
Date Posted: Aug 21 2009 at 5:00am
Cheryl,
 
Yes our signatures seem the same. I just pray that God allows me to be where you are...NINE YEARS LATER. I am so glad that you came on here and posted. I am trying to hang in there. Man some days are HORRIBLE. My kids started back to school. So my days at home seem lonely. Trying to stay busy. I just PRAY THAT SOMEWHERE THERE IS A CURE!!!!!!!!
 
LOVE,
Diane


-------------
dx 4/09 at 36 yrs old. dbl Mast. 5/09. 12 weekly Taxol 4 FAC tri weekly. 32 rads completed 2/2010. Its Back 5/2010!! Chest wall, Mediastinal node, Lft mammary node and liver. Back on chemo.


Posted By: MaryTwinA
Date Posted: Aug 29 2009 at 5:52am
It's me again....wondering out loud my thoughts.  I still dont understand why i should have the genetic testing done.  I was dx in February withTNBC and have completed 6 rounds (every other week) of adraimycin and cytoxin and have completed 10 weekly rounds of taxol.  (only 2 to go!  yea!)  Anyway, after i finish the last two rounds of taxol, my dr. said every three months, they will do blood tests, physical exams, and chest xrays to check to make sure cancer has not recurred.  As far as the genetic testing, any thoughts from anyone on that.  Steve, you answered before (thank you) but i am still trying to sort everything  out in my head.  Also, i would like responses from others that the  cancer recurred and want to know how SOON did it recur and how was it caught.  Does it recur more often than not?
 
Thanks everyone ahead of time.  Oh one last comment....anything i should do to Prevent recurrence?  If it recurs.......is it REALLY BAD? what happens?   just do more chemo?  What is  the more likely place that it recurs?  Just wondering...
 
Mary
 


Posted By: Suzanne
Date Posted: Aug 29 2009 at 6:50am
Mary, genetic testing can give you an idea of your risk of developing other cancers.  If you were to test positive for the BRCA1 or BRCA2 mutation, then you might want to consider removal of the ovaries.  There's a connection between ovarian cancer and the  BRCA1 or 2 mutation, so many women with the mutation choose to have their ovaries removed.  I had the genetic testing so I would have a clearer picture of my risks.  I also wanted to know if I could have passed along a mutation to my teenage daughter.  If I had tested positive, I would have opted for removal of the ovaries as a precaution and early screening for my daughter.
Just a word of advice, try not to fixate on "what could happen".  Although there are a lot of very sad stories out there about women who have had their cancers spread or recur, most TNBC women with early-stage breast cancer do not have a recurrence or mets.  There are programs you can use to put in your particular information (age, health, size and type of tumor, treatment, etc.) and get an idea of your chance of DFS (disease-free survival).  The DFS for early-stage TNBC is over 80%, so less than one in five will have their cancer recur or spread, and the odds get better every year with improved treatments.  You have to focus on the fact that you are doing everything you are able right now by having chemo and follow-up.  (I know that is easier said than done!)
My other thought is that you might want to check on appropriate follow-up care.  I'm concerned that you said you will have chest x-rays every three months.  That seems excessive and a huge exposure to radiation. 
Hang in there!
Suzanne


-------------
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: Sunday22
Date Posted: Aug 29 2009 at 9:21am
I want to add that you have to listen to your body! In March of this year I complained to my oncologist about my scar tissue. It seemed to be getting thicker. He and another doctor said it was just scar tissue. They were not worried.
Then while I was away on vacation in June. I looked at my breasts in the mirror and it seemed they were the same size! (After my lumpectomy in 2005 my affected breast became at least one size smaller.) I examined myself thoroughly and felt a lump so big and so hard it felt like a walnut. Mammogram, ultrasound and biopsies in July confirmed a thumb-sized cancerous tumor.
Listen to your body. If you think something is different about your breast, get it examined by a mammogram, ultrasound, MRI, or anything other than just a doctor. Doctors are still very important, of course. They are the ones who get to request a procedure.
Good luck!

-------------
Brenda
1st Dx 7/05 TN lumpectomy, chemo rads.
2nd dx 7/09 1st tumor ER+/PR-/Her2-; second tumor ER-/PR+/Her2-, bmx, immediate recon, T/C


Posted By: Fear Nothing
Date Posted: Aug 29 2009 at 7:52pm
Mary,
 
I was diagnosed last December with TNBC and opted for a bilateral mastectomy. I was also diagnosed with colon cancer back in 2006. I chose to pursue genetic testing for my own knowledge and power, and for the sake of my children. I did in fact test positive for the BRCA1 mutation. Needless to say, it worries me to death for my children... but knowledge IS POWER. At least we KNOW what to look for, what tests need done, how aggressive we can be for them, etc. I just had surgery three weeks ago to have my last ovary removed because of the high risk of ovarian cancer that comes w/ BRCA1. (I had a hystorectomy back in 06 but they left one ovary for estrogen production)
 
My personal outlook is that we must take each day as it comes. Life is such a precious gift, and I hope you can make the most of each day, focussing on the great success stories of so many women on this forum. Try not to dwell on the chance of recurrance, but rather savor the fact that SO many women are living wonderful lives years and years after TNBC!!
 
All my best to you!
 
FEAR NOTHING!


-------------
Age 34, Colon Cancer Survivor- 2006, DX TNBC 12/08, BRCA1, Bilateral Mastectomy, 2cm, 0/7 nodes, Completed 4 rounds A/C & 12 rounds taxol.


Posted By: SusanE1104
Date Posted: Aug 30 2009 at 8:02am
Mary,  I had my ovaries removed back in 1986 after one sister had been diagnosed with ovarian cancer and another sister had had breast cancer.  I don't know if the BRCA mutations had been found yet then, but I thought I was protecting myself.  One year later, I had breast cancer.  I had a lumpectomy and radiation tx. 
Four years ago, after the sister that had breast cancer was diagnosed with ovarian cancer, we were tested for the genetic mutations.  We both had BRCA 1 and my sister died a year later of ovarian cancer.
I thought I had a handle on it...no ovaries and with mammograms I could find breast cancer in time to survive it.  WRONG!  One year after my last mammagram I was diagnosed with stage 4 breast cancer...mets to liver.
I CANNOT understand why no one told me about triple negative cancer.  I had never heard of it, and even if I had, I wouldn't have known that I was more at risk for it because of my genetic mutation.  If I had had any idea that it existed or how serious it was, I would have had a bilateral mastectomy as quickly as I could arrange it.  Instead, I had a knee replacement and figured I would worry about the mastectomies later.  Big mistake.
I hope you will have the genetic testing done and find out as much as you possibly can about your risks.
Good luck,
Susan


-------------
Susan 62 1987 Stage 1   1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin
8/09 NED
12/09 liver mets Taxol/Avastin
4/10 liver mets
11/22 Parp Car/gem
parp failed
2/2011 Ixempra


Posted By: newalex
Date Posted: Aug 30 2009 at 10:36am
Susan
Was your 1987 BC a triple negative? Was your second BC a new primary or a recurrence of the first BC ? Usually a triple negative does not recur after 4 years. I assume your second time was a new dx and had nothing to do with the first dx? Right? Back in 1987 they did not have triple negative test yet but they had ER test. Was it ER negative? Did you do chemo the first time in 1987?
Love to you.


Posted By: SusanE1104
Date Posted: Aug 30 2009 at 10:47am
My 87 BC was Er negative.  I don't know if it was triple neg., but I didn't have chemo...just rads.  In '87 I was stage 1, and chemo wasn't given for stage 1 back then.  my surgical report states that my '09 tumor appears to be a recurrence.  The tumor was identical to the '87 tumor.  I know it seems impossible, and I haven't asked a lot of questions about it.  I'm too busy fighting the present cancer, but I'm doing well right now.  NED since late April....finished Taxol and Avastin one month ago.
 
Susan


-------------
Susan 62 1987 Stage 1   1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin
8/09 NED
12/09 liver mets Taxol/Avastin
4/10 liver mets
11/22 Parp Car/gem
parp failed
2/2011 Ixempra


Posted By: Suzanne
Date Posted: Aug 30 2009 at 11:12am
Susan, so did the pathology report state that your tumor was negative for progesterone, estrogen, and HER2neu?  That's the way you know that you are "triple negative".  There is no "triple negative test".  If somehow the pathology report did not mention HER2neu, the docs can go back and check for that in the tumor sample that should be on file.  (In California, centers are required to keep tumor samples for seven years.  I don't know about the length of storage in West Virginia, though.)  It's important to know exactly what type of tumor you had because it changes the type of treatment that could be beneficial.
 
I also would question the doc's opinion that the '09 cancer is a recurrence of the '87 cancer.  I just read an article about TNBC that said that a recurrence or mets after 8 years is virtually unheard of for triple negative breast cancer and that a recurrence/mets is almost negligible after five years.  Here's the info. from Kaniklidis' "Breast Cancer Watch Digest" 2/6/09. 
 
"Myth 2: Prognosis
Now let me first address the second myth and the issue of prognosis in triple negative disease. This has been critically elucidated recently by Rebecca Dent's1 team at Sunnybrook who demonstrated that triple negative disease exhibits a unique recurrence pattern and that not only is there a very sharp decline in recurrence risk of triple negative disease after the fourth year post-diagnosis, but that the risk of distant recurrence falls to absolute zero! - unheard of in any other type of breast cancer -  from eight years and after (and is in any event extremely small, almost negligible, even from five years forward), and in addition, although local recurrence is a risk factor for later distant recurrence among women with all other types of breast carcinomas, this does not hold true for triple-negative tumors – it was found that any local recurrence in triple negative disease is not associated with increased metastatic risk." 
 
I think it is important to remember that if you read many articles about triple negative and spend much time on this forum, you quickly become more of an expert on TNBC than the average oncologist.  The average oncologist just doesn't have the time to learn as much about triple negative as we do, plus we have a vested interest in finding out as much as we are able. 
Suzanne


-------------
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: phoenix
Date Posted: Aug 30 2009 at 11:27am
I Am a triple Neg. I finished treatment in April. I am NED. While I was on chemo I meet two long term survivors, one was a nurse at the hospital, the other was from the American Cancer Assoc. The nurse was in her 4th or 5th
year out. The other was 15 years out and looking healthy, cancer free and working.
I am planning on living till I am 128. There have been a good deal of longeivity in my family. No Breast cancer till me. Now the other day one of my Aunts daughters has a tumor near her lung. But is doing well.
Phoenix

She had Breast cancer twice one had been positive the other Triple Neg. So yes there are long term survivors I meet them.

At work I found out that 6 or more women had cancer at some time or other. Not triple neg. but some had double mastectomy's others partial and myself a lumpectomy and I am Triple Negative. 3 lymph nodes removed & surrounding tissue, no envolvement. It had started to go into the blood vessels. That is why I chose the Avastin trial. Stage II Chemo (adriamycin, Cytxon, Taxal, Avastin  33 rads.) I found (saw) the golf ball size tumor July 2008 Surgery August 2008 Chemo 2008-2009 Rads 2009 Ned April 2009


-------------
phoenix
DX 7/08
Lumpectomy 8.22,08
Stage II Triple Neg.
No node
Clear Margins started to go into blood vessals.
IDC
4 A/C Dose Dense
12 Taxol
rads in March
Albany,N.Y
Capitol Region


Posted By: Suzanne
Date Posted: Aug 30 2009 at 11:32am
Phoenix, did the long-term survivors tell you how they knew they were triple negative?  Fifteen years ago, physicians weren't testing for HER2neu, so I'm guessing the women only knew they were estrogen and progesterone negative.  ...but maybe their tumors were retested?
Suzanne


-------------
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: phoenix
Date Posted: Aug 30 2009 at 11:58am
The one Lady was from the American cancer society and I didn't get to go into that much detail. But I do not believe they would let her go around telling people if it was not true. I had asked my onocologist about long term surviviors. They are not allowed to give out names but they made sure I met her.

The one nurse was only 4 or 5 yrs. out. She knew, because the world isn't a perfect place and she almost died.

My one doctor feels getting past the 6-7 yr. mark with triple Neg. and then you can feel assured you will continue a normal life.

I will try to check back every so often. Here is my advice to women. Don't freeze or micro (heat) food or liquid in plastic containers. I wouldn't make ice cubes in them. Limit red meat in take. Stay away from as much sugar and fat as you can. exercise more, lose weight if you are over weight. It doesn't mean you won't get cancer, but cancer likes sugar and fat. There was no breast cancer in my family, I have a large family. 14 Aunts and fourteen Uncles (1 died as a child) their children ( many had 4-6) and their childrens, children.

Out of all those I am the first, to my knowledge.


-------------
phoenix
DX 7/08
Lumpectomy 8.22,08
Stage II Triple Neg.
No node
Clear Margins started to go into blood vessals.
IDC
4 A/C Dose Dense
12 Taxol
rads in March
Albany,N.Y
Capitol Region


Posted By: SusanE1104
Date Posted: Aug 30 2009 at 11:59am
Suzanne, 
I am definitely triple neg. this time.  My oncologist told me that.  I'm more than willing to believe that this isn't a recurrence of my first cancer 22 years ago.  It was my surgeon who said it was "apparently" a recurrence.
Maybe I'll ask my oncologists opinion about a recurrence when I see him next in Oct.  I think he's pretty good.  He tells me that when I relapse he's going to get me in a clinical trial.  I think he's referrring to the Parp inhibitors trials.  I hope I can get in, and I hope it's not too soon.
Thanks for your input.
Susan


-------------
Susan 62 1987 Stage 1   1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin
8/09 NED
12/09 liver mets Taxol/Avastin
4/10 liver mets
11/22 Parp Car/gem
parp failed
2/2011 Ixempra


Posted By: phoenix
Date Posted: Aug 30 2009 at 12:08pm
I posted the above message for the person who requested news of long term survivors. I followed a link to here.

-------------
phoenix
DX 7/08
Lumpectomy 8.22,08
Stage II Triple Neg.
No node
Clear Margins started to go into blood vessals.
IDC
4 A/C Dose Dense
12 Taxol
rads in March
Albany,N.Y
Capitol Region


Posted By: count65
Date Posted: Aug 30 2009 at 7:04pm
Hi Suzanne,
I saw a few of your posts referring to the two other long term survivors who work in the healh field and thought I'd copy a post of mine from a few weeks ago...  My direct email is mailto:count65@hotmail.com - count65@hotmail.com if you'd like to ask specifics.
 
Hi Everyone,
I'm posting to let all the newbies know that I'm a 9 year survivor of TNBC!  I was dx.d in 12/2000 when I was 5 months pregnant.  Had a mastectomy a week later, and began AC treatment just  3 weeks following my surgery.   I completed 3 cycles of AC when my water broke at 35 weeks of pregnancy.   I delivered a very healthy, petite daughter vaginally and continued my 4th AC on my regular 3 week schedule.   I then began 4 taxol treatments at 3 week intervals followed by 35 radiation treatments.  I had reconstruction surgery 4/2002 using my own hip fat, tissue, muscle and blood source and I'm very pleased with my outcome.   Please feel free to ask any questions here or email me directly.
Cheryl


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Dx 12/00 5mo pregnant,age 35
st IIB,IDC,high grade 4.3cm, 8/9 mbr score
DCIS,solid type,TNBC
1/10 pos nodes
AC&tax 4ea,35 rad
3 AC when pregnant
BRCA1&2 neg
daughter born 3/3/01
son 3/22/04


Posted By: Suzanne
Date Posted: Aug 30 2009 at 7:21pm
Congratulations, Cheryl, on getting to the eight-year mark and beyond!  You're one of the lucky ones who, having reached 8 years, now have an absolute zero chance of distant recurrence. Wow, I love that number!  :)
Suzanne 


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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: count65
Date Posted: Aug 30 2009 at 7:59pm
Hello Everyone,
Check out the "Promising breakthrough" forum under "TNBC Talk".  Lets all pray that science can study this chemical and come up with ways to use it with us bc patients within the next 3-5 years.  I'm not one to believe that everything takes 5+ years to analyze!  We just need to keep throwing money at the researchers and have them never stop the search for a cure!
Cheryl


-------------
Dx 12/00 5mo pregnant,age 35
st IIB,IDC,high grade 4.3cm, 8/9 mbr score
DCIS,solid type,TNBC
1/10 pos nodes
AC&tax 4ea,35 rad
3 AC when pregnant
BRCA1&2 neg
daughter born 3/3/01
son 3/22/04


Posted By: diane1234
Date Posted: Sep 04 2009 at 3:42pm

Let's keep these positive stories coming.....

MAY GOD BLESS US ALL


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dx 4/09 at 36 yrs old. dbl Mast. 5/09. 12 weekly Taxol 4 FAC tri weekly. 32 rads completed 2/2010. Its Back 5/2010!! Chest wall, Mediastinal node, Lft mammary node and liver. Back on chemo.



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