Tamoxifen, Shut off ovaries, or just diet + exercise

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varapappas
varapappas Member Posts: 8
edited May 2016 in Hormonal Therapy - Before, During, and After

To be honest, I'm terrified, because I can't find a livable solution for treatment. I had bilateral, clear margins, clear nodes...some small lymphatic invasion but not in nodes. My onc score, I got two...one dr. said 19 one said 21. BTW, I AM YOUNG!!! 34! So a lot of options are not available to me.

I tried Tamoxifen for one week. I should preface, I *have* endometriosis. I do know that Tamoxifen can cause endometriosis as well as endometrial cancer. After only a week, it overstimulated my uterus to excruciating pain, burst cysts, and just overall badness. One of my primary symptoms of breast cancer before the tumor was a rash on my neck and chin, like hives, but made of acne...it's intensely itchy and although is acne is also very much a rash. This suddenly came back on the Tamoxifen!! Hello...this means cancer for me!!

Ok, so I'm terrified to take Tamoxifen again, and it was only a week. Other option, shut down my ovaries. This poses no threat to endometriosis, but seems insanely scary!! We're supposed to have some estrogen and I'm actually higher in Progesterone positivity than estrogen! So wouldn't this just feed it up more? How does shutting them down compare to Tamoxifen SE wise? It's an injection, so once it's done, I can't stop the side effects!! Has anyone done both and can give me an idea of comparison?

Which brings me to my last thought...do I just walk away, finish my reconstruction, work on my stress and diet and life, and hope for the best? I'm in a gray area Onco wise. I have higher progesterone positivity than estrogen. And I'd rather do this; but everyone is trying to tell me I'll die if I do. I don't know what to do!!

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  • VioletKali
    VioletKali Member Posts: 243
    edited May 2016

    I was diagnosed with breast CA 3 weeks prior to my 32nd Birthday. I had a Bilateral Mastectomy, but could not finish chemo or herceptin. I am triple positive.

    I was in chemo pause, so we tried an AI. Poor quality of life made me say heck no. I tried tamoxifen, but I could not continue to take it because I needed my Prozac. The effexor increase and d/c of Prozac was no good.

    I am not afraid of dying, I am afraid of living poorly.

    I will take my chances. *I* am okay with it. You may not be, and that is okay.


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  • VioletKali
    VioletKali Member Posts: 243
    edited May 2016

    AI drugs gave me extremely stiff joints, pain, and fatigue. I did not need shut down because I was in chemopause. I have since exited it and have estrogen again, I love it.

    It never hurts to try. It is also okay to say you want to take your chances.

    I have no kids, and my husband understands that I just want to live my life. I do not have a reason to fight "hard" no matter what. If this makes sense.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited May 2016

    Hi varapappas:

    I'm sorry you have had such a bad experience with tamoxifen.

    The Onctoype Recurrence Score is well-validated to assist in deciding whether or not chemotherapy should be added to endocrine therapy. Please keep in mind that the estimated 10-year risk of distant recurrence associated with your Oncotype Recurrence Score is based on the assumption that you will be receiving 5-years of endocrine therapy (with tamoxifen alone, although AIs have been shown to achieve similar or slightly better benefit). So, if you do not receive any endocrine therapy, your distant recurrence risk would be higher than indicated by your Oncotype report. You can ask your MO to explain it more, and to provide you with a case-specific estimate of your recurrence risk without any systemic treatment (no endocrine therapy). (Your young age may also increase recurrence risk.)

    I am not sure it is reasonable to assume that reducing estrogen production will "feed up" your progesterone levels. Please ask your MO that specific question to ensure sound thinking.

    Many find that they tolerate one form of endocrine therapy better than another, and maybe that could happen for you. Certain ovarian suppression injections are monthly. Here is a thread which may be of interest to you.

    https://community.breastcancer.org/forum/78/topics/829343?page=6#idx_179

    I note that additional data from SOFT and TEXT studies have been published since the above thread was initiated, and consensus guidelines have been updated to include the option of ovarian suppression plus an aromatase inhibitor for premenopausal women in appropriate cases.

    I am a layperson, so please confirm everything with your MO.

    Best,

    BarredOwl

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