ILC and chemotherapy

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PSW
PSW Member Posts: 16
edited August 2016 in Chemotherapy - Before, During, and After

Hi all! I would love to learn from any of you as to how you are doing now if you chose not to do any chemotherapy for your ILC but did complete/are completing surgery, radiation, and anti-hormone drugs. I was told yesterday from my Kaiser oncologist, as a scare tactic I believe, that without chemo I have an 80% risk of dying from the spread of any free floating cancer cells within the next 3 years. what is your response to this statement? And let me know how you are doing please!

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited August 2016

    PSW, you can see by my stats that my dx was advanced in the beginning. My 6 cancerous nodes had burst open with Cancer growing on the outside & matted. ( called extranodal extension )

    I think if your nodes are clean, your odds are much better. The 30% that goes on to stage 4, generally are similar to my stats. Yes, some stage 1, clean nodes do progress.

    I would have the surgery, get your path report & then decide on what treatment is appropriate.

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  • daisylover
    daisylover Member Posts: 310
    edited August 2016

    Wow. I am really sorry that you had to hear that...

    I had a very low grade ILC which had spread to nodes, diagnosed in October 2013. Cancer was found in my prophylactic breast as well. I did bilateral mastectomy, tamoxifen, zometa, oophorectomy, and Palbociclib (Ibrance) trial... I had NO chemo, no radiation. I am seen by a doctor a Dana Farber, who leads many clinical trials... She never has mentioned death to me... never suggested chemo. Did you have the oncotype test? I had a low score, 9. It suggests a low rate of recurrence if I complete my HT. I am fine other than a few side effects from lack of estrogen... I am almost 3 years out... Still getting Zometa and taking Tamoxifen...

    The doctors at Dana Farber told me chemo would not be effective for my cancer (considering it's characteristics). Is your cancer a high grade? Or does it have a high mitotic rate? That would make the chemo a better option? I would get a second opinion if I were in your shoes -- maybe you will find someone who doesn't need to threaten you. Best wishes.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2016

    I am almost 5 years, oncodx of 34 pr less than 1%. But mitotic rate on 1 on both tumors.

    I feel great stopped AI at 4 years.

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