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Topic: what are the REAL reccurrance stats for TNBC

Forum: Triple Negative — Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Jan 1, 2011 06:43PM

minxie wrote:

I have heard anything from 20% to 80% and everything in between. My oncologist gave me my stats based on stage, and he did not seem to be taking the TNBC into account. From everything I hear TNBC has a higher recurrance rate the first 3 years and overall, but does anyone have a link to the exact numbers?

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Jan 1, 2011 07:15PM coonie wrote:

Hi Minxie. I'm sorry, but I don't have the information you're looking for. I just wanted to bump up your questions so some of the other sistahs can come along and read it. They'll be along shortly and will be able to answer your questions.

Good luck and gentle hugs!!

Chemo: (4 AC) (4 Taxol); 1 Year Herceptin; Bilat. Mast.; Ooph; Last Arimidex Pill 5/31/13

Dx 11/14/2007, IDC, 2cm, Stage IIa, Grade 2, 0/15 nodes, ER+/PR+, HER2+
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Jan 1, 2011 07:23PM mrsnjband wrote:

Hi Minxie,

I don't have any figures for you but it does have a higher reocurance rate.  It is highest in the first 3-5 years.  I have IBC & TN, I knew IBC had high reocurance rates.  I didn't know I had triple-neg until a few months ago, my doc didn't refer to it that way.  I knew my er/pr were neg & her2 was neg but he didn't refer to it as triple-neg. 

Hopefully one of the more knowledgable TN gals will come along and give you more specific info.

NJ

Norma June, Bi-lateral MX 2008, Bi-lateral DIEP 2011

Dx 1/10/2008, IBC, <1cm, Stage IIIb, ER-/PR-, HER2-Chemotherapy 01/25/2008 Adriamycin, CytoxanChemotherapy 03/10/2008 TaxolChemotherapy 05/29/2008 TaxotereSurgery 07/10/2008 Mastectomy (Right); Lymph Node Removal (Right); Prophylactic Mastectomy (Left)Radiation Therapy 08/11/2008 ExternalSurgery 08/15/2011 Reconstruction: DIEP flap (Right)Surgery 08/15/2011 Reconstruction: DIEP flap (Left)Surgery 12/12/2011 Reconstruction (Left)
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Jan 1, 2011 07:25PM LRM216 wrote:

Sorry Minxie, I don't even read them anymore. 

This disease whether your TN or ER Positive, doesn't seem to matter, as it never seems to follow any rules anyway.  Supposedly, years 2 and 3 are our most dangerous times for recurrence/progression.  If you get to 5, our rate for recurrence/progression deeply falls lower than ER+ gals.  However, I have seen and read about a few gals that recurred 7 yrs. out.  Ouch! according to all these "statistics" - that's not supposed to happen at all!  As my onc says - they are just numbers - nothing more and we are not a "statistics."  Just know that yes, there are recurrences and unhappy endings, but there are countless gals out there living just fine for many years with Triple N - they just are no longer, or never did, frequent cancer forums. 

I figure I went through Hell and out the other side with all the aggressive treatment I had and gave it my very best shot of never coming back.  Will it?  I pray not, but it is what it is.  It's out of my hands at this point.  We have come along way with treatments and recognition of this nasty sneaky disease - and hopefully it will continue that they keep up on us and keep trying to find treatments that will keep us alive should it revisit.  I sincerely feel it's all just a roll of the dice.

Wishing you all the best,

Linda

Life isn't about waiting for the storm to end, it's about learning to dance in the rain ... Age 62 at diagnose

Dx 2/23/2009, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER-/PR-, HER2-Surgery 03/07/2009 Lumpectomy (Right)Chemotherapy 04/25/2009 Adriamycin, Cytoxan, Taxol, TaxotereRadiation Therapy 10/21/2009 External
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Jan 1, 2011 07:26PM lrr4993 wrote:

I am stage 1 TNBC.  I was told by my onco that the recurrance rate is about 40% without chemo and about 15% with it.  I think I also read something along those lines somewhere but I don't remember where.  I do not have information about other stages.

Lisa

Dx 8/6/2010, IDC, Stage Ib, Grade 3, 0/5 nodes, ER-/PR-, HER2-
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Jan 1, 2011 08:04PM jenn3 wrote:

My onc and surgical onc gave me the stats when I was dx'd and I do remember them being high, or what I considered high.  However, I can't remember the percentages.  I used to focus on the chance of recurrances and read stats, but then let it go...........I needed to live in denial.  Maybe someone else can come along with some help.  I think there is a site called cancermath.net or .com that will give you numbers.  It takes into account the size of the tumor, nodes and grade of the cancer.

Jenn - June 2009 IDC-TN, Stage III, 02/2011 Stage IV mets to the lungs & spine / Laugh until your belly hurts, then laugh some more...........

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Jan 1, 2011 10:42PM Suze35 wrote:

My doctor gave me a 30-35% recurrence rate for my stats - she considers me Stage IIB.  I prefer to look at it as the majority of women do not recur.  My doctor also was sure to tell me these stats are at least 5 years old, and don't always take into account third generation chemo.

I really focus on being in that 65-70% group who does not recur.  I will do my best to be healthy and exercise, and that's about all I can control. 

Original dx Stage IIIa TN 9/2010

Dx 9/19/2011, IDC, 6cm+, Stage IV, Grade 3, 8/12 nodes, mets, ER-/PR-, HER2-
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Jan 2, 2011 02:06PM minxie wrote:

I was told with a stage 1 survival rates were 90%, when my micromets in 2 nodes tipped me to a 2b I was told  85%. This was before we knew the TN status. I keep hearing the TN makes it worse, but I cannot determine how much. Yes, I wish I could stop thinking about it, but everytime I research TN, hoping to hear of a breakthrough somewhere, more and more dire statistics I find.

IDC, lumpectomy, SNB, axillary ND 12/08. DD AC, Taxol. Then DCIS found 7/09, BMX w/lat flap reconstruction. Local recurrence 5/12, TN, 1 cm, node negative. Implant removed.

Dx 12/4/2008, IDC, 1cm, Stage IIa, Grade 3, 2/8 nodes, ER-/PR-, HER2-Chemotherapy 02/01/2009 Adriamycin, Cytoxan, TaxolSurgery 07/27/2009 Lumpectomy (Right); Mastectomy (Right); Lymph Node Removal (Right); Prophylactic Mastectomy (Left); Reconstruction: Tissue expander placement, Breast implants (permanent), Latissimus Dorsi flap (Both)
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Jan 2, 2011 06:08PM Luah wrote:

My onc said with my grade and node status, my 5-year R of R without chemo was 40-60%; half  that, with chemo.  Cancermath.net put my 15-20 year survival odds (from cancer) around 78%. (I am 53.) However, I don't think either really took into account the TN status. 

This is a study on behaviour and outcomes for TN versus other BC.  However, it was done on patients between 1987 and 1997, so the data is old.  http://clincancerres.aacrjournals.org/content/13/15/4429.full  I think its relevance is with respect to trends only, not actual statistics. And let's face it, the rate of recurrence for  any of us is either 100% or 0%. That's the bottom line.  

We've been through some things together/With trunks of memories still to come/Long may you run (Neil Young). Lx, ALND, 4 DD AC &12 weekly Taxol, 31 rads, completed Jul 10

Dx 9/14/2009, IDC, 2cm, Stage IIb, Grade 3, 1/14 nodes, ER-/PR-, HER2-
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Jan 5, 2011 11:53AM, edited Jan 5, 2011 11:55AM by poptart

I think it is difficult to find actual stats for this.  I know that some of the old stats show 67% disease free survival for tnbc (up to early stage 3 I think), but after more investigation into this it turns out that over 30% of the people didn't have chemo.  The San Antonio Meeting last year (2009) did some restrospective studies on tnbc disease free survival and I believe for early stage (both node negative and N1 - up to 3 positive nodes), the 5 year disease free survival for tnbc was 85%.  I think 37% had node involvement.  This was compared with hormone positive bc with similar stats (but typically smaller tumors) and the disease free survival was somewhere around 92%.  Of course, these percentages will get closer the farther out from diagnosis.  I recently read from this site that 50% of recurrences for hormone positve cancers occur between 6 and 12 years after initial diagnosis.  I think there was a retrospective German study (also from San Antonio in 2009) that looked at survival rates based on whether all treatment recommendations were followed.  I assume this included people through 3b ?  I know it included people with lymph node involvement.  For people who followed all treatment recommendations the 5 year disease free survival was 86%.  For those who did not comply with 2 or more treatment recommendations the disease free survival was somewhere around 50%.

 TNBC is not one disease with one uniform prognosis.  I am sure some people with tnbc who receive chemo have as good or better prognosis as people who are hormone positive.  TNBC is a category of breast cancer defined purely in terms of what it is NOT - this really distorts the the fact that there are probably real differences in people who are triple negative.  I am sure there are other ways (and possible new targeted therapies) to define cancer besides hormone status and her2 status.

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Jan 5, 2011 11:57AM, edited Feb 11, 2011 10:40PM by HeidiToo

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Jan 5, 2011 12:13PM ChrissyMH wrote:

Poptart,

I love your posts.  I read that you were Stage 1/0 Node involvement/TN.  I don't know what grade.  I am Stage 1/0 Nodes/Grade 3/TN.  I had a lumpectomy on the strong recommendation of my surgeon.  I was so addled and shocked by the diagnosis in the first place, I didn't challenge anything he said.  You, with similar diagnosis, had a mastectomy.  Why?  Am I under greater risk now by having only a lumpectomy? 

Thanks...

ChrissyMH: Diagnosis: 12Oct10, IDC 1.3cm Stage 1/Grade 3, 0/7 nodes, ER-, PR(10-15%), HER2-

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Jan 5, 2011 12:25PM, edited Feb 11, 2011 10:39PM by HeidiToo

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Jan 5, 2011 01:32PM Luah wrote:

Poptart:  Thanks for your post... some good info in there. Agree with you that we can't generalize about TN prognosis.

We've been through some things together/With trunks of memories still to come/Long may you run (Neil Young). Lx, ALND, 4 DD AC &12 weekly Taxol, 31 rads, completed Jul 10

Dx 9/14/2009, IDC, 2cm, Stage IIb, Grade 3, 1/14 nodes, ER-/PR-, HER2-
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Sep 21, 2013 09:43PM latoya81 wrote:

I know this post is 2 years old, but I thought with triple negative breast cancer, recurrence was rare after 5 years. This is what I was told from my oncologist.

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Oct 13, 2013 02:29PM netty46 wrote:

Sorry but I recurred 12 yrs out same breast.