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long term TN survivor story please

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diane1234 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote diane1234 Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote count65 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MaryTwinA Quote  Post ReplyReply Direct Link To This Post 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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunday22 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 18 2009 at 10:30pm
Good point, newalex.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote newalex Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MaryTwinA Quote  Post ReplyReply Direct Link To This Post 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 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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

Edited by steve - Aug 18 2009 at 7:28pm
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MaryTwinA Quote  Post ReplyReply Direct Link To This Post 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
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suzanne Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunday22 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 17 2009 at 2:22pm
Yes, I am Adnerb. Backwards for Brenda.
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rena View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rena Quote  Post ReplyReply Direct Link To This Post 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)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote newalex Quote  Post ReplyReply Direct Link To This Post Posted: Aug 17 2009 at 10:46am
I read about 13% women with BRCA2 can have TN.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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

Edited by steve - Aug 17 2009 at 10:06am
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rena Quote  Post ReplyReply Direct Link To This Post 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)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Aug 17 2009 at 9:47am
newalex,
 
yes, my dx was IDC.  I am uncertain of what medullary is. I


Edited by kirby - Aug 17 2009 at 9:49am
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sfcindy Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sfcindy Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote newalex Quote  Post ReplyReply Direct Link To This Post Posted: Aug 17 2009 at 9:17am
Kirby
Was your orginal dx an IDC not medullary?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post 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
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