Do late relapses in triple negative women happen

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LisaThompson
LisaThompson Member Posts: 26

I've been told differently from 2 different oncologist and I don't know what to believe.  I was told that with triple negative breast cancer, relapse happens early, within the first 2 to 3 years.  And after 5 years, recurrence is rare.  This is what I was told from my previous chemo oncologist.  However I was told from my new chemo oncologist, that is not true.  That it is not rare for a TN's to relapse even after 5 years.  I don't know what is true or what isn't true.

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  • Luah
    Luah Member Posts: 1,541
    edited March 2012

    This is the conclusion of research done here in Toronto: "...This pattern is characterized by a rapidly rising rate in the first 2 years following diagnosis, a peak at 2 to 3 years followed by a decline in recurrence risk over the next 5 years, and a very low risk of recurrence thereafter. Unlike women with other types of breast cancers, the great majority of women with triple-negative cancers who had no evidence of progression after 8 years did not recur thereafter."

    The full study is here:  http://clincancerres.aacrjournals.org/content/13/15/4429.full#T1

    Don't get hung up on the absolute numbers - the research is a bit dated now, but the patterns of recurrence are interesting.   

  • LisaThompson
    LisaThompson Member Posts: 26
    edited March 2012

    Thanks, Luah for providing me the link to that article.

  • MsBliss
    MsBliss Member Posts: 536
    edited March 2012

    I am trying to find the newer data, but the eight year mark is not considered the benchmark anymore.   There is a higher rate of recurrence in the first 2 to 3 years; at three years, the rate starts to decline quite nicely, and this trend continues to five years wherein the rate drops again.  After five years it is rare to have recurrence; it happens, but rarely.

  • bottkota
    bottkota Member Posts: 285
    edited March 2012

    I was 4 1/2 years out when I recurred.....:(  sorry but I don't put any hope in recurrance rates....I believe it can happen at anytime....this is such a stupid crazy disease!

    Cathi

  • LisaThompson
    LisaThompson Member Posts: 26
    edited March 2012

    I won't be returning to this forum again.  No disrespect to anyone here, but this site is just way too depressing for me.  I just pretty much feel hopeless for my mom and for myself.

  • mebmarj
    mebmarj Member Posts: 380
    edited March 2012

    Just in case, here's some food for thought.

    You are asking a question on discussion boards for breast cancer patients, many of whom are here for quite some time to support people who have questions like you do. Some are here again due to another diagnosis. You asked and got answers, maybe not the ones you were looking for when you posted your question.

    You really ought to seek the opinion of an oncologist, or another opinion for you and your mom based on all your medical history. Although many of us read quite a bit and everyone has their own experience, we are not physicians with access to your records, nor are we able to predict the future in terms of being given another diagnosis. If you really are having a difficult time coping still, please see someone for counseling.

    Best wishes.

  • Luah
    Luah Member Posts: 1,541
    edited March 2012

    Lisa: I'm sorry if anything I posted made you feel that way. Getting a TN diagnosis is pretty devastating at first. But the vast majority of TNs are effectively treated and go on living their lives. This is not a death sentence by any means... and there are hundreds of women on these boards who are living proof of that. You asked specifically about patterns of recurrence, and I think we tried our best to give you the facts. 

    You might also want to go to http://hormonenegative.blogspot.ca/ which has tons of great information on "the positives about triple negative" and the www.tnbcfoundation.org for more information and a forum. Did you know, for example, that a  healthy low-fat diet and exercise has been known to reduce recurrence risk by 40% or more? For me, that means I have the power to cut my odds of recurrence from about 30% (based on my own stats) to about 18%! Pretty good and I'll take it.

    If your feelings of hopelessness persist, I agree with mebmarj, you may want to explore counselling so you can feel empowered to support your mother.  Good wishes to you both. 

  • LNBCA
    LNBCA Member Posts: 49
    edited April 2012

    My mom was cancer free for five years, before getting a new primary cancer, (triple negative both times, first time we had no idea she had triple neg.) I know how you feel about reading all the negatives. But I'm finding out that there are a lot of positives as well. EDIT: Turns out she got TNBC again after being free and clear for five years, because she has the BRCA1 gene.

  • LindaBelan
    LindaBelan Member Posts: 2
    edited December 2012

    Hi - I was told that if I made it past my five years that I could consider myself safe from a relapse. The first time was in 1999 when I was 53. I was just diagnosed with TN in the other breast after 13 years. Like so many others, I have no history of any kind of cancer on either side of my family going back for generations (and people in my family live long lives, so it's not like they all died before they could be diagnosed).

    Actually, I have a theory about one of the triggers in the onset of my two cases of TN bc, which I'm getting ready to post. But, like ALS (which my son died of 4 years ago), I think it's going to be a different set of triggers for everyone. I do think that, again like ALS, TN bc is on the increase because of environmental issues and personal habits that weren't around 50 years ago.

  • JoanQuilts
    JoanQuilts Member Posts: 633
    edited December 2012

    I recurred with TN after 19 years.  The doctors actually called it a new primary, but it was in the same breast.

    Nobody talked about triple negative 19 years ago.  I merely knew that I was ER, PR and HEr-2 negative and that while chemotherapy would be effective for me, hormonals were out.  I still don't worry about it!

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