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long term TN survivor story please

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newalex View Drop Down
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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 9:15am
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?
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newalex View Drop Down
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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 9:12am
sunday22
what kind of dx and tx you had the first time?
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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 9:12am
Can someone tell me what NED stands for? Cindy
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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 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote newalex Quote  Post ReplyReply Direct Link To This Post 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+ .
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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


Edited by steve - Aug 17 2009 at 8:13pm
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 jody Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sadierose2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 16 2009 at 7:15pm
Hi Alex,

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

Warmly,
Sadie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MaryTwinA Quote  Post ReplyReply Direct Link To This Post 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. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote newalex Quote  Post ReplyReply Direct Link To This Post 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.

Edited by newalex - Aug 16 2009 at 3:42am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suzanne Quote  Post ReplyReply Direct Link To This Post 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


Edited by Suzanne - Aug 15 2009 at 2:45pm
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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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."

Edited by steve - Aug 15 2009 at 7:29am
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 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunday22 Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote wrsmith Quote  Post ReplyReply Direct Link To This Post 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.
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