Recurrence Risk for Triple Positive

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NotVeryBrave
NotVeryBrave Member Posts: 1,287
edited October 2018 in HER2+ (Positive) Breast Cancer

I'm not sure why I'm posting this today. I know that no one can give me an answer. I guess I'm looking for the experiences of others.

My stats are below (IDC, +++, TCHP, BMX). There were 2 questionable nodes at diagnosis - 1 of which was biopsied (negative). Post chemo pathology at surgery showed NO cancer remaining in breast and none in nodes.

I took Tamoxifen for 3 months before quitting due to SE's. I will probably try again once finished with Herceptin, but may try a half dose this time. I kind of need to see how I feel without any meds for a change.

So I've looked at the models (Predict, LifeMath, Adjuvant Online) and nowhere do they allow the variables for response to NAC or type of surgery. I've asked my MO about my risk for recurrence and he is vague. Basically - I'm lumped into a group with everyone else for statistics. I get that. It's just frustrating.

Is there anyone out there with my same diagnosis, treatment, and response who will share what their follow up has been and whether or not they've had a recurrence?


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  • Lita19901
    Lita19901 Member Posts: 211
    edited January 2018

    Have you checked out the Triple Positive board? It's a very informative and supportive space, and there are others there with experiences similar to yours

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited January 2018

    Lita - I'm not sure why you deleted your post. I have checked out the triple positive thread, but it's been in existence for so long and has so many responses that it's hard to find answers there. Thanks for trying to help.


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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited January 2018

    Anyone with a similar diagnosis willing to weigh in?


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  • Brit76
    Brit76 Member Posts: 1
    edited January 2018

    I asked my oncologist the very same question after my PCR, and she couldn't offer me anything other than 'you're as close to cured as you're going to get'. I was still in the grip of the terror of recurrence (still am, if I'm honest!) so did much Googling and found something called Neo Bioscore, which is a predictor that takes into account your pre- and post-chemo stats to give you a 5-yr % figure. Sorry I don't know how to create links on here but if you Google it you should be able to find it.

    My oncologist said that because Neoadjuvant chemo is relatively new, and PCRs relatively rare, there is little data out there, and what is there is based on small sample sizes. I think as Neoadjuvant becomes more usual, and as the data sets grow there will be more such models, with stronger data behind them.

    Hope that helps!

    Caroline

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  • Gudrun
    Gudrun Member Posts: 140
    edited January 2018

    hi brave - yourself being TP, 2A, G2, and even having achieved pcr - from all I've been reading and researching so far, your case should be one of those which won't ever recur in about 96%. I fully unterstand your worries though and am lurking at any answers here on your threat. Love gudrun

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  • Gudrun
    Gudrun Member Posts: 140
    edited January 2018

    apropos pcr, I always wonder if the achievement of the rare pcr with TP depends on ER/PR and Ki67 status. I suspect (i.e. not necessarily right) pcr is more common with lower HR receptors and higher Ki67.

    My daughter's was highly ER and PR positive with an intermediate Ki of 20%. She had residual cancer which makes me worry a lot, of course.

    Any ideas?

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited January 2018

    Brit76 - Thanks for the info on Neo-Bioscore. I did look it up but can only find articles discussing it - no site to try it?

    Gudrun - I've seen rates as low as 86% and as high as 96%. Ultimately, I'm better off than many with BC and thankful for that. And there are always those that don't do what stats predict, of course.

    Is the info in your signature yours or your daughter's? I've also heard about not as good response with high ER status. Mine was very high - I think 99%. I was never given a Ki67 score.


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  • Gudrun
    Gudrun Member Posts: 140
    edited January 2018

    Brave - it's my daughter's. Mine was different from hers: a small 1.7 cm lobular, 4 years ago. Have been on letrozole so far. Since my daughter's dx mine hasn't bothered me any more, goes without saying.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited January 2018

    I'm sorry. I'm sure it's very hard as a mother. Sometimes it's just easier to face our own troubles than those of our loved ones.


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  • Gudrun
    Gudrun Member Posts: 140
    edited January 2018

    Thank you, brave. I'm still close to tears every single day. I think I'm traumatised. My dear daughter tries to go on with life, and I do the research. It's like an unspoken agreement.

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  • Lita19901
    Lita19901 Member Posts: 211
    edited January 2018

    I just wanted to post this about high ER/PR HER2, and chemo, etc.

    While it is true that high ER/PR receptors make us less responsive to Herceptin and chemo, that doesn't mean that our outcomes are worse.

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  • Kittycat76
    Kittycat76 Member Posts: 1
    edited May 2018

    I know this is an old thread, but im ER, PR, HER2+, stage 2b at diagnoses September 5th 2017, 1 positive node, 6 rounds of TCHP, double mastectomy, still doing herceptin till fall...had PCR at time of surgery...stopped my Tamoxofin a few days ago too...horrible side effects

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited May 2018

    I just saw another MO today for basically a second opinion on follow up care. He agreed with what I've done so far for treatment. He'd like me to try Tamoxifen again (isn't convinced I'm in menopause).

    He didn't quote me any numbers - just said my response was "the best" and my recurrence risk is very low. "It will never be zero" is what he said. He also told me that the negative lymph node biopsy isn't really called negative but "discordant" since that was the assessment of the radiologist that did it. Bummer.

    So basically the concern is that some cancer cells could have potentially traveled elsewhere in my body before I was even diagnosed. They could be hanging out, waiting for some chance to become active. That seems unlikely to me since my treatment got rid of all of the cancer, but he's the MD at Hopkins and I'm not. I'm just the poor fool who feels like I get to spend the rest of my life in fear.

    So Endocrine therapy would reduce my remaining small risk by half and if I did well on it for 5 years then they'd recommend another 5. And if I really can't tolerate it than I can choose to not do it. Basically what I'm doing now.

    He does not recommend any ongoing testing or imaging of any kind. He had no other options besides Tamoxifen which I had horrible problems with. And my personal concern is what any of these drugs has done to me already.

    I don't have any answers for you, Kitty.


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  • annwill64
    annwill64 Member Posts: 16
    edited October 2018

    My mother in law has just been diagnosed with triple negative BC, we don't know the stage yet. She is 88 years old and is leaning towards no treatment. Hoping to hear some input on this. Thank you

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