SABC Grim news from SABC re residual disease post chemo

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SSInUK
SSInUK Member Posts: 245
edited January 2020 in Stage III Breast Cancer

With 5cm of tumour and 7 positive lymph nodes POST chemo I am catagorised as RCB111 (Residual Cancer Burden). I presume all of those in the same boat are fellow Stage 3'ers. The study just reported at the SABC made for tough reading and I reach out tonight to hold hands with those in the same position. For HR+ women, we have only 52% chance of being free of disease over 10 years. Only 45% if you are HR+ HER2+. I am reeling a little as this is an up to date large and seemingly fairly definitive piece of research. Its a dismal prognosis. Do we go back and ask for more treatment?

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  • LaCombattante
    LaCombattante Member Posts: 226
    edited December 2019

    hi SSinUK. Reaching out to you, holding your hand and sending you virtual hugs.

    I had surgery before chemo, so no way to know how I responded, but expecting path complete response for grade 2 HR+ ILC would be a bit naive. I have been requesting additional treatment for months, it seems that EVERYONE in my medical team agrees that I would benefit from adding a CDK4/6, but... in my country they are only approved for use in metastatic disease. My MO was attending SABC this year; I will discuss with her again, but I know the answer already.

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  • SSInUK
    SSInUK Member Posts: 245
    edited December 2019

    Thanks. There have been so many advances in HER2+ cancer with so many adjuvant treatments, and TN typically is treated very proactively with additional post surgery cheois etc - so it deeply shocked me to see how comparatively poor the outlook was for high stage HR+ cancer that doesn’t respond well to neoadjjuvant chemo - and yet with no treatment approach beyond hormone therapy, which I am sure the women in the study will have been on anyway

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  • Flo80
    Flo80 Member Posts: 349
    edited December 2019

    Hi Ssinuk I have the same concern. I just had surgery on the 26 November and had 8 nodes with cancer and still tumour of 3 cm. The tumour has shrunk from 5 cm to 3 cm from chemo before surgery. I have started Harmony therapy and waiting for radiation. I was also wondering if they can give me some more additional treatment that can keep reoccurrence away but my oncologist thinks no need. There have been some positive news for Hert+ but wonder anything for hert

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  • trinigirl50
    trinigirl50 Member Posts: 343
    edited December 2019

    I just came back from my oncologist. I also was asking if I could be more proactive and add a CDK4/6 or Xeloda or some other preventative measure as I come up to 5 years. He said that so far there has been nothing proven to suggest that the CDK4/6 inhibitors would work on microscopic disease (i.e. before mets) and they can't assume that there would be benefit until results come back from all the current trials (I think there are quite a few testing the various types on locally advanced patients). He said there were drugs used for advanced colon cancer, and of the four tested to be used preventatively, only 1 had any additional benefit. So, in other words, wait for results, it is not a given that they work preventatively. The only demonstrated drug is the AIs or Tamoxifen. There you go. I see some women have been prescribed CDK4/6, or Xeloda despite it not being standard of care, but my oncologist says no. He says best thing is exercise.

    I don't think the 52% is anything new. Anytime I used the Predict or Cancermath etc that was always pretty close to what I got over 10/15 years.

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  • Flo80
    Flo80 Member Posts: 349
    edited December 2019

    I plan to go for this trial

    Ribociclib With Endocrine Therapy as Adjuvant Treatment in Patients and will ask my oncologist. Guess we need to fight

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  • LaCombattante
    LaCombattante Member Posts: 226
    edited December 2019

    Hi Flo,

    Good luck! Hope you can get into the trial - please, keep us posted.

    I tried to get into POLAR (Palbociclib for isolated locoregional recurrence) but having chemo disqualified me.

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  • Flo80
    Flo80 Member Posts: 349
    edited December 2019

    Hi Lacombattan thank you so much and I hope my oncologist lets me take it. It’s so scary and with my number as 8 nodes I think I fall into RCB I’ll and the reoccurrence rate is quite high like 69 percent and it’s so scary

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  • gwydiana
    gwydiana Member Posts: 47
    edited December 2019

    This is so disheartening. I'm 1.5 years since Dx and 1 year since double mastectomy, dose dense chemo and max radiation. I cannot get my Oncologist to order a PET or CT scan for the life of me. So I'm stuck in a wait and see nightmare.


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  • LaCombattante
    LaCombattante Member Posts: 226
    edited December 2019

    My MO follows the official guideline: PET/CTs only in case of symptoms that persist for more than two weeks. Reasoning: early detection of mets does not influence overall survival and cons are many: radiation exposure, risk of false positives which will lead to more monitoring and more radiation and inevitable scanxiety... I am sure the cost factors in as well.

    I did have PET/CT after my recurrence was diagnosed, to rule out metastatic disease, but that was it. Now I am back to annual mammograms on my right breast and ultrasound. However, I will be pushing for having the US every six months. My breast surgeon was on board with the plan, but he retired last month and I have not met the new one yet.

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  • SSInUK
    SSInUK Member Posts: 245
    edited December 2019

    Gwydiana I am so sorry I didn’t mean to discourage you. There are many women on this board that have survived the difficult DX we share. My frustration is that ER+ bc has come to be seen as the ‘good prognosis’ DX relative to Her2+ or TN but those of us in this particular category of ER+ disease face an equally challenging prognosis with few new options. Looking at forums such as the SABC it feels like research lags behind for us. I suggest we all lobby our ONCS! It is frustrating to have missed the Ibrance trials by a couple of years as this seems to offer the kind of hope Herceptin brought. As for PET scans - I’ve written elsewhere on the boards about this, I have them regularly and it is an EXTREMELY stressful form of watching and waiting. I am trying to talk my onc out of them. Courage all! We can do this...

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


    This encouraging ted talk might interest people looking to be proactive and reduce risk of recurrence:

    https://www.google.com/search?sxsrf=ACYBGNT7YkvM66bYpPjXH1s4ezOJ3GD-eg%3A1577384030466&source=hp&ei=XvgEXrDVGYLh-gSckpfoCA&q=can+we+eat+to+starve+cancer+ted+talk&oq=can+we+eat+to+starve+cancer+ted+talk&gs_l=psy-ab.3..0j0i22i30l2j0i333l3.1142.8189..8538...1.0..1.402.4854.6j28j0j1j1......0....1..gws-wiz.......0i131j35i39.munjUoaCmxs&ved=0ahUKEwiw_Lq29dPmAhWCsJ4KHRzJBY0Q4dUDCAg&uact=5

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  • G1973
    G1973 Member Posts: 66
    edited January 2020

    hi ladies. I am going to be part of the natalee study. Right now I am still in radiation and taking xeloda. Hard to understand why not to throw the kitchen sink at it

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  • LaCombattante
    LaCombattante Member Posts: 226
    edited January 2020

    hi G1973,

    Great to hear that you could get into the study!

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited January 2020

    SSinUK, would it be possible to post the link? I hope so. Thank you!

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