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long term TN survivor story please

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diane1234 View Drop Down
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    Posted: Sep 04 2009 at 3:42pm

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

MAY GOD BLESS US ALL
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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count65 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote count65 Quote  Post ReplyReply Direct Link To This Post 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
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Suzanne View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suzanne Quote  Post ReplyReply Direct Link To This Post 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 
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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count65 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote count65 Quote  Post ReplyReply Direct Link To This Post 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 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
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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phoenix View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote phoenix Quote  Post ReplyReply Direct Link To This Post 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
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SusanE1104 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusanE1104 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote phoenix Quote  Post ReplyReply Direct Link To This Post 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
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Suzanne View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suzanne Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote phoenix Quote  Post ReplyReply Direct Link To This Post 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
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Suzanne View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suzanne Quote  Post ReplyReply Direct Link To This Post 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


Edited by Suzanne - Aug 30 2009 at 11:25am
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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SusanE1104 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusanE1104 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote newalex Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusanE1104 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Fear Nothing Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunday22 Quote  Post ReplyReply Direct Link To This Post 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!

Edited by Sunday22 - Aug 29 2009 at 9:24am
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suzanne Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MaryTwinA Quote  Post ReplyReply Direct Link To This Post 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
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote diane1234 Quote  Post ReplyReply Direct Link To This Post 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


Edited by diane1234 - Aug 21 2009 at 5:01am
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 Autumn10182001 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote count65 Quote  Post ReplyReply Direct Link To This Post 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
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