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Any 10 year survivors out there?

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denise07 View Drop Down
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    Posted: Dec 11 2011 at 10:55pm
Hi,
I posted a thread earlier for any long term tn survivors and a lot of you asked how many years I am looking for. I think it would be a great inspiration for all of us here to hear from youing for well I would like to know if there are any 10,12 ,15 year survivors out there who have remained ned ,I am also interested on the treatment plan you had and what stage you were in. I think it would be a great inspiration for all of us here to hear from you. I am only 4 years out and always wonder what if I did this or that differently you just don't know. Like I said before just about everything you read on tnbc is so doom and gloom no magic pill to take after treatments just prayers. So if you are out there please post and let us know we would love to hear from you, I know most people don't post and move on with thier lives but if you come upon this post please respond it will be a great help.
Thank you,
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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nmunoz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nmunoz Quote  Post ReplyReply Direct Link To This Post Posted: Dec 11 2011 at 11:30pm
Hi Denise,

We have at least one 10+ survivor (Kirby) who may chime in soon. I know a lady who was diagnosed with TNBC 12 years ago and is doing fine. She told me that when she was diagnosed she didn't have her HER2 measured as I believe the test wasn't available or done then, so she just knew her ER, PR status and she is BRCA1+ which is what led her doctors to believe she had TNBC. I don't know what her node status was but she told me she was stage IIb at diagnosis. She had double mastectomy, chemo and radiation and she also had her ovaries removed later.

I can also tell you about my aunt who was diagnosed at 36 in 1985. The cancer had already spread to some of her lymph nodes and back then they didn't check her hormone receptors so we won't know for sure if she was TN or not. But we assume she was BRCA1+ as she was my father's sister and I inherited the mutation from him. Having that mutation and being diagnosed before 40 are both strong indicators of TNBC. She had a radical mastectomy and radiation; no chemo, no hormone therapy, nothing else. She lived for over 20 years after that and she died in 2006 of a different cancer.

I'm sure there are plenty of cases out there but the thing is that HER2 status has been tested realtively recently so it is hard to know about many TN cases. Also, people tend to move on with their lives and not look back. I know my aunt decided to block the topic and in fact decided not to go to the doctor again and the cancer that killed her could've had a different prognosis if found earlier but by the time she braved going to the doctor it was too late. So, not hearing about long term survivors around here doesn't mean there aren't any.

I do love to hear about long term survivors but I also understand that each case is different. So, I try to take it one day at a time and not focus in the numbers or statistics that much. Here's a link to an essay that I really like about statistics not defining us:
http://cancerguide.org/median_not_msg.html

Best,

Natalia
Natalia, 38 years

Dx TNBC 10/22/08, BRCA1+

Double Mx 11/20/08 with Recon.

3/37 nodes

Rads 7 weeks done 8/09

ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2011 at 8:05pm
This is from the Komen boards (under triple negative forum) - thought I'd pass it on.  Lovely Rena is 25 years out!  Now that's truly magic for our ears:
 
"Hi Sadie. Back then, they could tell that I was ER/PR negative, but there was no HER test. Much later, I asked my oncologist if he thought I was triple negative, and he said yes because I was diagnosed young and eventually tested positive for the BRCA2 genetic mutation. He said that these are consistent with triple negative. As for advice, I think the best I can give is this: keep working on your mental/emotional health so that you can deal with stress, and try to enjoy your life and do the things that make you happy. As much as possible, surround yourself with loving people. There's no magic bullet, unfortunately, but I think that being happy helps promote healing. I wish you all the best, Sadie. Love, Rena
Rena age 62 California Central Coast
25-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mitymuffin Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2011 at 8:42pm
One of my best friends was diagnosed in 1986 with  "double negative" (they didn't do the HER test then), when she was about 30 years old,  and the cancer was described as "very aggressive".  She had a single mastectomy, chemo and radiation and has never had a re-occurrence and is in great health.
Diag. Triple neg. 4/23/10 Stage IIB, 3.2cm, grade 3, 1/11 lymph nodes, lumpectomy 4/23/10, AC + T + Avastin, clinical trial 5103, Rads, age 59
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bak94 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 13 2011 at 4:35am
Hi,
Good news is that I had trple neg 9 years ago, stage 2b. Lumpectomy, chemo and rads.
Bad news I now have new primary in opposite breast, did chemo bmx and waiting to heal to do rads. Good news is I had a complete response to chemo. I am brca 1 positive. Please feel free to askme any questions.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Dec 14 2011 at 2:45am
Hi Denise,   and thanks for remembering me Natalia,
Rena has posted on our site but not for some time. I had the pleasure of meeting her a couple years ago. You can find her story by looking in the archives.
 
I was dx. in Jan. of 2001. Almost 11 years ! I was age 45 at dx. At the time they didn't have a name for TN. I don't think that came out until 2006. I am not sure how much the doctors were aware at the time. My tumor was 2 cm. I found it while showering one morning. I was stunned, not knowing how I could have missed feeling something that large previously. I had a lumpectomy within a month. 13 lymphnodes were removed. They were just starting to do SN but my surgeons comment was "better safe, than sorry." I immediately started chemo. Very different from now, in that no muga scans, no ports, no steroids. This was also just prior to DD. Protocol for the day was 4 rounds of AC. Zofran [ which I was considered lucky to get ] for nausea. I pretty much sailed thru chemo. I continued working but did alter my schedule. I did the typical radiation with a boost afterward.
 
I feel accupuncture saved me during chemo allowing me to retain some energy. My whole upper quadrant seemed somewhat "frozen" so I did alternative tx including yoga, massage, accupressure to normalize my shoulder. I had trouble with the scar tissue creating sensation down my arm and had massage for that for several years. Both these issues were resoved with tx and I haven't had any further problems. One lung was compromised slightly with radiation but I am not sure I notice. I run for health benefits, a couple miles, several times a week.
 
I didn't alter anything in my life during/after tx. other than to remind myself to stop and smell the roses, be present.
 
When I first found this site, I was freaked out about what I was reading. I had to remind myself that I couldn't redo tx, the best was done with what knowledge they had then and I  was well over 5 years out. One step at a time and it is 11 years later.
 
Good luck to all of you.
 


Edited by kirby - Dec 14 2011 at 2:46am
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 14 2011 at 12:06pm
Well here is a 15 year Metastatic Breast Cancer survivor...yes I know we donít know if she had TNBC but I found it very inspirational..

Dear Stephen, 

  
To build on the momentum created on MBCA Day 2011 and to continue the conversation, MBCN has partnered with Genentech, Metavivor, and Living Beyond Breast Cancer to launch a short vignette featuring one woman's story as part of the Faces of MBC program.  

 

Visit  facesofmbc.org/  to hear how Diane sees her MBC diagnosis as an opportunity to reprioritize her life and how she made a dramatic life change after she was told she had one year left to live. Still going strong after 15 years, Diane continues to live and hope that new treatments will be available for her as she needs them.

 

Please share this video with others. For every video view, Genentech will donate $1 to MBC initiatives and programs (up to $20,000).  


Thank you!  

Michele Przypyszny
President
Metastatic Breast Cancer Network  MBCN
MBCN is a national, independent, patient-led, nonprofit advocacy group dedicated to the unique concerns of the woman and men living with metastatic breast cancer.  We strive to help those living with stage IV breast cancer be their own best advocate through providing education and information on treatments and coping with the disease.

 

 

© 2011 Metastatic Breast Cancer Network. All rights reserved.
MBCN is a 501(C)(3) not-for-profit organization


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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mindy555 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 17 2011 at 9:45pm
Here's a post I found in the archives when I first joined the forum.  We TN's are always looking for hope, so I copied this and saved in a folder to give that bolster of hope.  I wish I had the date of the post... I only copied the body copy.  I'm hoping this is okay to re-post since it's here already- You'd just have to do some digging to find it.  - Mindy

_________________________________________________

Hi, I'm here because I was told by a genetic counselor to check out information about being triple negative. I was 26, I'm now 37, for 11 years I've been living with no lymph nodes in my right armpit and a partial mastectomy. And every few years a ton of extra lab work. I want to be part of a research study to find out why I grew a 5 x 4 x 3 cm ductal carcinoma tumor and lived all these years. While so many others reoccur. Out of guilt or fear and not wanting to feel sad I don't think I'll go to a few sections of this discussion board. BUT!!

.. I'd really, really like to know if there are other's out there like me, are there any other 20 somethings in this group ? (I've noticed a few 30 somethings), any 10+ years triple negative survivors ? maybe we share something in common that could help other triple negative women ???

For myself, I feel that my body had identified the cancer before they cut it out. It was poorly differentiated with necrotic tissue. Meaning, my body had sealed it off and it was dying, being starved as it grew. And I had through the roof antigen levels- ki-67 Antigens are a message produced by white blood cells to kill invaders. I know this is my un-medical opinion about my body being busy working to fight the tumor even before they started chemo, it's just how I look at it or deal with it after. For all I know maybe that's how all young triple negatives are. I've skimmed a bit here and at the Cancer Survivor Networks. And I remember what seemed to me like a lot of extra rounds of chemo to completely shut down my blood levels and have read of others complaining of similar.

I don't want to offend anybody who's struggling with chemo and ports and being cooked like a chicken right now. Sorry, that's what it looked like to me, it was beyond sunburn, it was deep, they made permanent scars on my ribs. I hear that treatment across the board it better now, less destructive then it was 10 years ago. I hope there are many more long term survivors out there. I bet from my own experience, they are for the most part ignoring or repressing cancer as a topic that can only be dealt with when it has to be. Never the less, it's tough to not know if you are alone, or if what you went through is common. And long term side effects ??? That is what I'm dealing with right now. They are guessing or trying to figure out if I'm going into early menopause or shutting down a few years early. Don't know yet what that means but so far it's just another round of tests with no conclusive results.. Stern%20Smile

Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 17 2011 at 10:36pm
Thanks for sharing everyone.

Natalia- The story you shared reminds me a lot of my Mom's.   She was 38 at diagnoses, most likely carried the BRCA 1 mutation,  was treated by radical mastectomy and radiation w/no chemo.  She lived 30 years until she developed AML.  I believe she had something else going on which went undiagnosed for some time- despite regular doctor appointments.  We also know her leukemia was there a year before they actually diagnosed it.  ***Insane!!***   Her stomach was terribly distended for quite some time...and, she still had her ovaries.   The chemotherapy given for AML couldn't do the job because of other health obstacles, I'm betting.   This is my speculation, but I just know she had something else going on.  You would've never known it.  She never complained..  never missed a day of work.  Talk about a positive attitude.. For her the cup was always half full.   I can still hear her joyful laughter.  Mom and I regularly laughed ourselves to tears.  How I still miss that.

I'm not much for statistics either.  I'd rather live each day to its fullest. 

NONE of us know when it's our time to be called home.  I look at life as a true blessing.. One beautiful day at a time...
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 17 2011 at 10:43pm
bak94-

Congratulations!!!  You certainly inspire!  Thank you for sharing!!!

kirby-

Same for you!  Just wonderful and inspiring!  I love your philosophy for life!


Much Love,

Mindy


Edited by mindy555 - Dec 17 2011 at 11:01pm
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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