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kirby View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2009 at 8:45am
then all you can do is love and support her. Spend as much time as you are able, have all those conversations.
 
I don't mean to be morbid but if you are able ask her feelings on dying. What her wishes may be. My mother was determined to beat Ovarian but had a hard time expressing emotions. Her friend said she could tell when she had been talking to me [about some of these subjects] that she was more open and able to then discuss them with her friend further. My mother did pass away and I really didn't know what she wanted for services. I guess I assumed her husband would know but that was silly on my part because he kept his head buried in the sand more than my mother !
 
Now to try to throw something more positive in..Suzanne Sommers did only alternative tx , I believe, and she is still around. I don't know what kind of cancer she had.  The last I had asked a customer, a friend of hers had chosen alternative and was doing well also.
 
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dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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mysunshine View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mysunshine Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2009 at 8:51am
that is encouraging... to know. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vickyann Quote  Post ReplyReply Direct Link To This Post Posted: Jul 16 2009 at 6:39pm
i agree with Denise on the numbers. I did chemo.
I hated losing my hair and putting my daughter who is 20 thru the scarey part of seeing me sick from chemo. It is over now ....my hair is back....i feel healthy and i know i made a choice based on the numbers.
My prayers go out to you and i feel it is precious you are brave enough to come here and ask a question i know that scares you. Your mom can do the diet and still do chemo if she decides. You are a good daughter..know in your heart you can not make her do anything. Hang in there sweetie and take care of you.....We are all here if she wants to check us out and we are here for you too...
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09
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mysunshine View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mysunshine Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2009 at 4:05am
Thank you ; I asked her if she knew the statistics fro not doing chemo, she said the dr told her it only helps about 12% of the patients they did it on...? Sounds funny to me and she said that  she is still considering the surgery late fall but chemo to her is only a few more months to live in a sickly state. she said she wouldnt survive the chemo and that she feels that if she gets her body back into the natural state that God intended it to be in that her body will heal itself. She feels she would rather have a few more months of quqality life instead of sick life. im honstly angry and hurt at the same time, she doesnt know it, but I cant see how Im her only daughter, granted im 29 & have 3 kids, but I feel thath er decision is irrational, and she gets defensive when I even mention the traditional treatments. I love her and I am so saddened thatshe is going thru this. Thank you to whoever started this forum its helping alot!!Pink%20Ribbon
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alene View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote alene Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2009 at 6:45am
Dear Mysunshine
 
My mother had a breakdown and became a paranoid schizophrenic. with hallucinations  She lived in the streets as a homeless person in Chicago for about 30 years.  She wore mascara under her eyes like a "football player"...so she could growl and scare away the "gangbangers".(her words).. I only saw her about 7 times from the time I was 16 until she had a stroke in a shelter in Florida.  I brought her to Seattle...and placed her in a beautiful nursing home that i worked in.. where she passed away  It was there that we discovered her breast cancer.
 
My mother was especially afraid of doctors..had been involuntarily placed in a mental institution when I was 5 for about 6 months....and told stories of homeless people she knew going into the hospital and never coming back.  She believed that the doctors were killing them to harvest their organs.
 
So...I completely identify with many of the feelings that you are expressing. When she would show up at the bus station...and visit me for a few days...it was so hard.  I wanted to get her help...so I'd try to gain her trust...so if my mother had said that the grass was purple today...I would have said "and what a beautiful color of purple it is". Still she would only stay a few days..have some type of violent outburst and then run away..again..
 
The  last time I spoke to her...before the stroke..I took her to a public place and tried to explain to her...that she needed help.  I told her that I didn't know anyone who had a mother that was homeless...that she was getting older...she was developing severe diabetes...(she thought she had "snakes growing in her legs"...her feet were swelling and turning black)..she needed help..I offered to get her an apartment...she could pick any doctor she wanted...that I was worried she would die in a shelter and I'd never even know what happened to her.
 
She became furious,verbally abusive and violent...needless to say...it didn't end well. 
 
So I really really really understand what it feels like when you can't save someone you love...
 
This is why I reacted so strongly in my first post..."Save her...Save her...Save her from herself...was all I could think" when I read your post...It's what I lived with my whole life...
 
But the truth is...as much as you'd like to...you cannot be your mother's mother...She has "free will"...and gets to make her own choices...whether you agree or not. 
 
Sometimes I felt angry about it.  I understood that she was mentally ill but that didn't change the fact that her choices and fears made me have to grow up with horrible & tragic memories...and live most of my life without a mother...
 
Your mother's choices may in fact lead to her precipitous death...and You can't stop her.  Children that have alcoholic parents go through similar feelings. 
 
I don't know what your relationship is with your mother..but your responses seem as though she is very "powerful" in your life..that when she sets her mind to something...you already know that there's nothing you can do...except...accept it...
 
Perhaps there is a way that you can tell her that you are going to support her choices but convince her to allow that "wonderful" doctor of hers to follow her progress...with periodic diagnostic scans(CAT & MRI,annual whole body PET scan) and bi-monthly blood tests.  In this way...your mother could see for herself whether her choices are working....Since he appears to be "selling alternative treatments"...he should at least assist her with the pain control and antidepressants such as xanax...and meds to help with other side effects...that she will need as her condition worsens.
 
Has she had a PET scan...does she know the extent of her disease yet?
Is she against removing the tumor and affected nodes if any? I was confused by the initial stats that you listed..T1 indicates a small tumor...are you sure that she is stage 3 or was it that she had grade 3 "aggressive" cancer? The only way to know if her plan for alternative therapy is working is to have a clear understanding of where she is now..
 
There is a website that oncologists use that predicts the benefit of chemotherapy at extending survival and recurrence risk..
 
 
You'll have to register..but it's free...then choose online access and log in..select breast cancer...from the side menu...then version 8.0 standard...then there's a disclaimer page...then you're in...
 
Choose ER- and your mother's stats for age,nodes, grade, health and tumor size..Choose the prognostic button and calculate for high risk...Leave horm therapy alone...we don't benefit from that..and you can't deselect it...under chemo..choose Third Generation..You can toggle between mortality...and relapse...and it will show you graphs..with chemo treatment...and without..
 
It's really designed for ER+ breast cancer but I read that it could be used as a general guide by TN gals...it's just a little optimistic...You can also use it to see her ongoing risk as her tumor increases in size...
 
I'm so sorry that you are going through this.  You have my love and prayers that your mother's choices for alternative treatment will in fact work.  You are not alone...It's a long journey...We are here for you...Come here and blow off steam...ask questions...cry in frustration or just chat...We care...
 
Lots of love
Alene


Edited by alene - Jul 17 2009 at 7:19am
DX 5/21/2008 TN 8cm TAC
Mast 12/08
Extensive Residual Lymphatic Invasion
Inop node clavicle
68 Rads
Stage IIIc
Recur 11/09 Her2+
Surgery 68 RADS
4/10 Biopsy Skin Mets TN
28 RADS
Stage IV
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mysunshine View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mysunshine Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2009 at 7:24am
wow! Alene thank you. Sorry to hear about your mom, that was hard I know. The stats are the ones she gave, she did say it was aggressive. I don't understand what any of this means , Ive tried to do research on it but come up short handed, I will check my email for the last visit, she said that the tumor were larger I will copy & paste the results.                  
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colleen View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote colleen Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2009 at 12:21pm
Keep us posted on ur mom susnshine.  I would very much like to hear of her progress.  Peace.
Colleen
DIAX 4/08 age 49 Stage 1C, 1.8 cm, IDC, Grade 3 Lumpect 5/08
rads 33 end 8/08
no lymph node 0/4 BRCA 1/2neg
no chemo
< stress
> nutrition
9.11 N.E.D
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2009 at 12:33pm
Sunshine, do you have a copy of your mother's pathology report?  If not then you can get one and use that to look online, there are several reliable websites that will show you what everything means.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mysunshine Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2009 at 12:36pm
I don't have a copy of her report, just what she emailed me  which was Tn Bc aggressive, grade 3, stage 111a, T1, c, N-1, MO. She has emailed me the tumor size, I am still looking for the email that had the diamater sizes in them
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Post Options Post Options   Thanks (0) Thanks(0)   Quote billie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2009 at 5:39pm
Hi Mysunshine,
   
       I am so in hopes that the size of her tumor is the size of the member that was practically insisting that she be told to do chemo even though her oncologist and a board of oncologist were telling her that hers was so small that they did not see any reason that she should do the chemo.I cannot remember the members name at this time ,but I am sure that there are other members that remember her also.
      Wouldn't that be a blessing!!!Wow.
 
      And Alene,You are such a strong and beatiful woman to have tried all those different things to help your mom and yet you are still having to deal with so much difficulties for your self.But you know what!It is in my life time that I can accept or even walk away from something if I know in my heart that I have given and done everything that I could possibly think of to do before I gave up.And lady it sounds as if you did everything that you could possibly think to do for your mother.You are so so so right.As the old saying goes,You can lead your horse to water,but YOU cannot make him drink.
Billie posting for sis Betty/67/caucasion female/diagnosed 2-27-08/gradeIII/7mm/invasive ductal carcinoma/T N /clear margins/node neg/4 X's taxotere-cytoxan/36 rads/7-08 PET/CT double image/no cancer
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billie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote billie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2009 at 6:01pm
  
 
 
     Oh and Alene,isn't this a wonderful place where you can come and just poor your heart out.This forum is priceless and is a blessing for so so many of us.So so many that really in truly care about others and what kind of a day they are having.
 
           Lots and lots of Huggggsss to all   Billie
 
    
Billie posting for sis Betty/67/caucasion female/diagnosed 2-27-08/gradeIII/7mm/invasive ductal carcinoma/T N /clear margins/node neg/4 X's taxotere-cytoxan/36 rads/7-08 PET/CT double image/no cancer
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Post Options Post Options   Thanks (0) Thanks(0)   Quote alene Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 1:29am

Dear Mysunshine

Sorry it took so long to get back to you... It took a while to come up with the T1c....most of us...just list T1..
 
I can only assume that your mother got this information from a pathology report...after a lumpectomy or a mastectomy?
 
I'll try to decipher some of the code for you
 
You wrote:
Tn Bc aggressive, grade 3, stage 111a,
 
Let's take it in chunks:
 
Tn Bc aggressive: Triple Negative Breast cancer which is aggressive
 
Grade 3: High Grade (this is one time when getting high grades...isn't good)  High Grade cancers are faster growing and more likely to spread...About 66% of us Triple Negative gals get High Grades..
 
You wrote  T1, c, N-1, MO. Lets try this T1c N1 M0 (as in zero)
 
T1c: Tumor more than 1.0 cm but not more than 2.0 cm in greatest dimension (about 3/4 inches or maybe close to 1 inch - not good with metrics)
N1:  Cancer has spread to 1 to 3 axillary (underarm) lymph node(s)-most likely
and/or tiny amounts of cancer are found in internal mammary lymph nodes (those near the breast bone) on sentinel lymph node biopsy.
M0: No distant metastasis
 
It looks like I skipped stage..but actually the above information is what determines the stage...
 
You wrote Stage IIIa however as you can see below..
Stage IIA: T0, N1, M0 / T1, N1, M0 / T2, N0, M0 falls into Stage IIA
 
However back to my original assumption...this info is from a pathology report...The pathologist hasn't seen your mother.. just her cancer..
 
Her doctor has seen her..and may have changed her N1 to N3
BECAUSE one of the below statements is true...
 
Stage IIIC: T0-4, N3, M0: The tumor is any size (or can't be found), and one of the following applies:
Cancer has spread to 10 or more axillary lymph nodes. -Not Likely..the pathologist would have caught this one...
Cancer has spread to the lymph nodes under the clavicle (collar bone).
Cancer has spread to the lymph nodes above the clavicle.
Cancer involves axillary lymph nodes and has enlarged the internal mammary lymph nodes.
Cancer has spread to 4 or more axillary lymph nodes, and tiny amounts of cancer are found in internal mammary lymph nodes on sentinel lymph node biopsy.  -Not Likely..the pathologist would have caught this one too...
The cancer hasn't spread to distant sites or M0
 
Could your mom be Stage IIIa.?..sure but we've got something wrong in the details then...like either tumor size (T1c)...or Node involvment(N1)...the best way to know is look at the path report.
 
So to Summarize:
According to the stats you listed your mom is a Stage IIA however
Your mother should know from her discussions with her doctor if her cancer has spread to under her clavicle/supraclavicular or mammary node area which would make her indeed a Stage 3c...It is possible that she is a stage IIIa..but that means we've got a wrong tumor size or node involvment.

A lot to digest I know...remember knowledge is power...the only way to know if a treatment is working...is to know where your mother is now.and to follow up regularly with diagnostic tests..

Hugs and prayers
Alene
 
and Billie thank you so much for your kind thoughts...I too am so glad that we have this forum...it's truly a life vest in some pretty stormy seas.
 


Edited by alene - Jul 18 2009 at 9:44pm
DX 5/21/2008 TN 8cm TAC
Mast 12/08
Extensive Residual Lymphatic Invasion
Inop node clavicle
68 Rads
Stage IIIc
Recur 11/09 Her2+
Surgery 68 RADS
4/10 Biopsy Skin Mets TN
28 RADS
Stage IV
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vickyann View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vickyann Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 12:54pm
rom Wikipedia, the free encyclopedia

Sunshine this is something i found for you..hope it helps

Max Gerson (18 October 18818 March 1959) was a German physician who developed the Gerson Therapy, an alternative dietary therapy which he claimed could cure cancer and most chronic, degenerative diseases. Gerson described his approach in the book A Cancer Therapy: Results of 50 Cases. However, when Gerson's claims were independently evaluated by the National Cancer Institute, it was found that Gerson's records lacked the basic information necessary to systematically evaluate his claims, and the patients who were "cured" by his treatment were also receiving standard, effective medical treatment simultaneously.[1] The therapy is considered scientifically unsupported and potentially hazardous,[2][3] and has been blamed for the deaths of patients who substituted it for standard medical care.[4]
Vickyann
Dx Christmas/07
Stage2 Grade 3
no nodule braca neg
lung nodule no growth
TAC x 6 no rad
finished chemo June 08 reconstruction 12/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2009 at 2:20pm
Thanks Vickyann,
 
There is information regarding the Gersen diet in the top post of the News/Resource section put out by Johns Hopkins.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mysunshine Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2009 at 4:38am
thank you for the break down in the reports. Im not sure of which of that is right it's super confusing. But she has not had a lumpectomy or mammogram. This is so true for this site, it is so helpful!!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kikidan Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2009 at 4:46pm
Hi Sunshine,
 
I actually spent some time with Charlotte Gerson when she came to my chiropractic college in the mid-90's.  She is Max Gerson's daughter and taught some of the protocol. 
 
After spending the weekend with her. I was convinced that I would do her father's protocol before doing chemo, radiation, etc.  In fact, during her lectures, she asked if anyone in the audience had been to the Gerson clinic. (2 years in a row she gave lectures at the college which was located in the middle of nowhere in upstate NY and we advertised the lectures to the general public).  Each year, several survivors came to the lectures.
 
However, flash forward 12 years to my own diagnosis 6/2008.  I did NOT do her protocol.  It is such a specific protocol that needs to be followed to the absolute finest detail.  Even as far as the juicer that is necessary.  You have to have a specific type of motor, etc.  Without following every SINGLE, minute detail, you cannot expect the protocol to work.  Therefore, I knew that i would not be able to follow it.
 
If your Mom is insisting on using Gerson's protocol, I IMPLORE you, with every cell of my being, that you get your mother out to California to see Gerson's doctors.  Nobody should pick up her texts and try to implement this program without professionals that have been trained by Charlotte and her doctors.  Your mother needs a great deal of support to implement this program.
 
Otherwise, all of us would do well to follow Charlotte's advice: no sugar, low protein, vegetables and fruits, rest, coffee enemas (also done by a very strict protocol), etc.
 
She has a website with a link to a doctor that has a Gerson hospital in California.  PM me if you cannot find it.  I can get you the phone number.  Good Luck to your Mom.....Kiki
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Post Options Post Options   Thanks (0) Thanks(0)   Quote alene Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2009 at 2:54am

Hi Sunshine:

You are right it is very very confusing...welcome to the world of "breast cancer treatment"...I feel like I had to graduate a "crash" medical school course...just to understand what was happening to me...
 
Am I right in understanding you  that your mother  has not had a "mastectomy" or a "lumpectomy"...no surgery yet?
 
Does "biopsy" sound familiar?...Did she have a biopsy in say a "surgeon's office?
 
Is your mother against testing like a PET scan?
(Explanation - painless outpatient scan - Looks at the whole body...would let your mother really know the extent of her cancer...It may have spread beyond her breast..as it did in mine)
 


Edited by alene - Jul 22 2009 at 3:20am
DX 5/21/2008 TN 8cm TAC
Mast 12/08
Extensive Residual Lymphatic Invasion
Inop node clavicle
68 Rads
Stage IIIc
Recur 11/09 Her2+
Surgery 68 RADS
4/10 Biopsy Skin Mets TN
28 RADS
Stage IV
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mysunshine Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2009 at 4:02am
I will let my mom know about the Dr's in California. My mom has a biopsy and I apologize for not posting the exact email of the size of the tumors she emailed me I guess it got erased although I'm not sure how....? But yes I beleive she did have a scan I dont knoe if it that specific one; she has heart problems and they tested her heart to make sure she would be able to take the chemo even though she still will never do it.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote colleen Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2009 at 5:02am
Sunshine it is ok 2 NOT take the chemo.  Most on this site do not agree with me, but I said no.  I feel I just have 2 say that as there are many advocates for chemo as the solution to the problem.  I admire your mother for being her own case study.  I send her well wishes!  Om shanti!
Colleen
DIAX 4/08 age 49 Stage 1C, 1.8 cm, IDC, Grade 3 Lumpect 5/08
rads 33 end 8/08
no lymph node 0/4 BRCA 1/2neg
no chemo
< stress
> nutrition
9.11 N.E.D
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mysunshine Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2009 at 5:04am
hugs , thank youHug
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