Do lots of women with TNBC relapse after 5 years?

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LenaT
LenaT Member Posts: 29
edited June 2014 in Triple-Negative Breast Cancer

I was diagnosed with triple negative breast cancer 5 years ago, and was told by a breast surgeon after my diagnoses that about one quarter of people with triple negative breast cancer will have a relapse after 5 years.  I'm not exactly sure if that means a lot of people or not.  Is that a lot?

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  • wrsmith2x
    wrsmith2x Member Posts: 410
    edited December 2012

    WOW, that sounds a little high to me.  I was under the impression that the number of Tri-Negs that recur after 5 years is very low.  Maybe some one will come along with better info.  I was 4 years and 1 month out when my recurrance happened.

    Good luck and glad you made the 5 year mark!

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  • LenaT
    LenaT Member Posts: 29
    edited December 2012

    Thanks, wrsmith2x

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  • Yayme
    Yayme Member Posts: 107
    edited December 2012

    Hi Lena...



    I have heard from very great Oncologists from Dana Farber and Sloan Kettering that recurrences and risk of mets drops down major significantly after 5 years...there is also multiple studies and articles out there that say the same....now with that said, it can happen, but less likely.... you can can get a new primary, and if you are BRCA positive, contrlateral breast cancer risk is very high...hope this info helps...

    Lisa

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  • LenaT
    LenaT Member Posts: 29
    edited December 2012

    Thanks Lelea.  I really appreciate the information you've provided.

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  • tibet
    tibet Member Posts: 545
    edited December 2012

    Hi Lelela

    Did you oncs say or based on the studies, how low the mets risk is after 4.5 yrs? I am 4.5 yrs out but still worry a lot although i try not to think about it....do BC survivors especially with TN dx after treated grow to old age?

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  • SherylB
    SherylB Member Posts: 450
    edited December 2012

    Tibet, in my reading and my oncologist confirmed; those of us with TNBC have a higher rate of recurrence in the first 5 years but if no problems after 5 years our rate of recurrence is actually lower than those with other types of breast cancer.

    Hang strong, Sheryl 

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  • lisagwa
    lisagwa Member Posts: 232
    edited December 2012

    Is recurrence risk the same with dcis, stage 0?

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  • lago
    lago Member Posts: 17,186
    edited December 2012

    This article is from 2008 but supports what has already been said: linky 

    This more recent: linky
    "Joseph Sparano, associate chairman of the Department of Medicine at Montefiore Medical Center in New York, concurs, adding that "some types of breast cancers, such as triple-negative breast cancer, usually recur within five years, while other types, particularly estrogen-positive cancers, can recur after 10 years or longer." 

    also

    "Ligibel also stresses that more than 80 percent of women who develop breast cancer will not experience a recurrence or die of the disease. "A woman diagnosed with breast cancer," she says, "has much better odds that she will never hear from her disease again than women with most other common cancers."

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  • Yayme
    Yayme Member Posts: 107
    edited December 2012

    Hi Tibet...so sorry for the delay as I just saw your post. As you have read by the others including myself, that after 5 years, our rate of recurrence drops big time. I so understand your fears as I have those very ones myself and do find it hard sometimes to get it out of my head to keep moving forward, however it is very true that most of us the GREAT MAJORITY..go one to not have recurrences or mets...it's the fear that gets me sometimes, as I am sure it does for all of us....hang in there and feel free to PM me anytime to chat...Lisa :)

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  • Yayme
    Yayme Member Posts: 107
    edited December 2012

    Hi lisagwa

    Having DCIS even triple negative in itself has a better much lower, recurrence rate than if it were invasive. DCIS in itself basically means you caught the bull by its horns before it got out of the gate...lol

    Hope that makes you at least laugh and feel better.  Lisa

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  • HollyHopes
    HollyHopes Member Posts: 497
    edited December 2012

    My oncologist and ALL my research says that the highest risk of recurrence for TNBC is within the first two years after diagnosis!!

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  • SherylB
    SherylB Member Posts: 450
    edited December 2012

    Statistics also show if that we make it to 5 years our odds of recurrence is actually lower than other types of breast cancer. For me the need is to be very aggressive now with this cancer.

    Sheryl

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  • netty46
    netty46 Member Posts: 296
    edited January 2013

    i recurred after 12 years. yes tnbc.  they say probable recurrence or new primary. they are not sure. same breast.  localized to breast . 

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  • Yayme
    Yayme Member Posts: 107
    edited January 2013

    Hi Netty...



    I am so sorry you had a recurrence after so long...although rare, it can happen. Did they check to see if you were BRCA positive? As I remember from prior posts, this recurrence happened in your reconstructed breast? I hope you are doing better after treatment, and wish you well so you you never have to fight this beast again...sending gentile hugs...



    Lisa

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  • JoanQuilts
    JoanQuilts Member Posts: 633
    edited January 2013

    I recurred - or had a new primary - with triple negative after 19 years.  But I am the exception, not the rule.  And because I have been followed so closely, my second bc was found when it was only .9 cm.  I am now 1 year out following my BMX and doing great.

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  • liv-
    liv- Member Posts: 521
    edited January 2013

    thats great you were monitored joan and only .9cm and to get on top of it.

    encouraging, thanks.

    xx

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  • JoanQuilts
    JoanQuilts Member Posts: 633
    edited January 2013

    I don't want to scare anyone - as I said, I am the exception rather than the rule.  But we must understand that this disease runs a very uncertain course and must never let down our guards.

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  • netty46
    netty46 Member Posts: 296
    edited January 2013

    LELELA   Im Brac negative.

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  • liv-
    liv- Member Posts: 521
    edited January 2013

    joan quilts - thats the best advice always,

    dont let your guard down!!

    congtratulations on doing great now.

    xx

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  • bubbalu
    bubbalu Member Posts: 177
    edited January 2013

    I'm not on here very often but I am a TN and 3 years out.  I just read this in the BC research papers on TNBC.

    This writing is listed under Positives About Negatives under the SABCS Recap of Triple Negative Research I would encourage you to read the entire article.

    "First, some numbers on statistics for TNBC: In general, survival rates decrease with larger tumors and those with affected lymph nodes.  But, after three years, the chance of recurrence of TNBC drops significantly.  And after five years, the risk of recurrence of TNBC is actually lower than for other forms of breast cancer."

    It does sound like a lot of research is being done into TNBC. 

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  • liv-
    liv- Member Posts: 521
    edited January 2013

    thanks bubbalu - yes after 5 years drops again more so than mainstream bc.

    cheers

    xx

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