New info on risk after 5 years

pesky904
pesky904 Member Posts: 402
edited August 2019 in Triple-Negative Breast Cancer

I am finding this very concerning. I am a patient at Dana-Farber Cancer Center in Boston. I had an appointment with the survivorship program in January and the NP I saw told me - exact quote - "If you don't have a recurrence within 5 years, there is a 100% chance you will not get a recurrence."

I was floored. I mentioned it to my oncologist at an appointment about 2 weeks later and she was not happy to hear that someone told me that. She said she was going to definitely talk to someone because TNBC patients should not be told that.

Fast forward to recently and I had to see my breast surgeon but he's on medical leave so I saw his NP. And she says to me word for word the exact same thing! "If you don't have a recurrence within 5 years, there is a 100% chance you will not get a recurrence."

I told her I'd heard that before and my oncologist was concerned that I was told that. This NP told me that it's true and that Dana-Farber as a whole now feels comfortable telling triple negative patients that after 5 years, their risk of recurrence is virtually 0%.

I plan to once again bring this up to my oncologist, but I just can't believe this is true, but for a major cancer center like Dana-Farber to be saying it, there must be some new studies or something?

I know there are many people on this forum only who had a recurrence after 5 years. It seems really, really odd to me that they're suddenly saying the risk of recurrence goes away specifically for triple negative after 5 years - I know we're a small sample but it hardly seems like a negligible risk after 5 years. Has anyone else heard anything like this?


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Comments

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2019

    pesky, I'm not TN, but I remember a thread from years ago that talked about this.

    I've done a bit of searching in this site, and found the following threads, which include some TN women who unfortunately did have a recurrence after 5 years:

    https://community.breastcancer.org/forum/72/topics/754149?page=1#post_2505537

    https://community.breastcancer.org/forum/72/topics/810775?page=1#post_3704160

    I also found this study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5765226/#!po=40.4762

    Honestly, even if recurrences of TN breast cancer after 5 years are extremely rare, no one should ever say "100% chance you will not get a recurrence". It's irresponsible.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2019

    The statistics I've seen do show a lower risk of recurrence than hormone postive cancer but certainly not no risk. I specifically asked my mo, who is tops in the field, he said my recurrence risk was less than 10%, I am ER + Pr-, her2 negative.

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  • notdefined
    notdefined Member Posts: 286
    edited June 2019

    My ON told me that my chances of having a recurrence are significantly lower than the other breast cancers after being NED for 5+ years. She did not say 100%, but that chances of recurrence were really low after that point.


    Edited to add that I am triple negative.

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  • Flynn
    Flynn Member Posts: 307
    edited June 2019

    My MO told me that after 5 years without progression my odds of progression will drop dramatically. That said nobody can know for sure that there’s not a dormant cancer cell somewhere. Also since we don’t know what caused my bc in the 1st place, we can’t be certain it won’t happen again. Her take works for me. I did all the recommended treatment, I try to live a healthy lifestyle and i’m focused on my future.

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  • pesky904
    pesky904 Member Posts: 402
    edited June 2019

    Thanks for the replies. I was also told that the risk with TNBC is top loaded, meaning much higher risk of recurrence in the first few years. I am concerned that the NP told me that she was told Dana-Farber as a whole has decided they feel comfortable saying there's no risk after 5 years. I agree with what was said, that seems like an irresponsible statement. I fear that some patients will ignore symptoms or stop going to the doctor after 5 years. Yes, we're all responsible for taking care of ourselves, but we also all know that there are people out there who, if they're told they have zero risk after five years, will ignore signs, chalk symptoms up to aging and perhaps assume they're fine when they may not be.

    For two different people in two different areas of Dana-Farber to tell me they are now saying there's zero risk tells me it is something that has been decided institution-wide, and I find it very irresponsible. Not only that, but a TNBC survivor could still get another cancer. I don't like this stance being taken by what's viewed as a reputable top tier cancer center.

    My 2 year "cancerversary" is next week and I'd love to believe that in 3 years I can just forget about cancer. But it seems too good to be true.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited August 2019

    My MO said the first three years is the peak recurrence window for those who recur. (He has personally never had a patient recur after 3 years.) Recurrence rate drops off very steeply after 3 years, and then at 5 years it becomes nearly zero (but not quite). There is also a possibility that a TNBC that 'comes back' after 5 years could be a new primary. This is probably because a high grade TNBC does not tend to 'go quiet' the way some ER/PR+ cancers can.

    Of those who get PCR (after neoadjuvant chemo and surgery, and rads if a LX), 90% will remain cancer free. Yes, TNBC has no drug analogous to Herceptin or Tamoxifen for long term management. But TNBCs silver lining is that we get to exhale in a way our other sisters do not.

    My attitude is that I will believe the stats, have a big exhale after three years, and a full exhale after 5 years. I will then eat clean and exercise, and remain attentive to a new primary.

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