what are the REAL reccurrance stats for TNBC

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!!

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

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.

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.

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...

Sorry but I recurred 12 yrs out same breast.