Anyone opt out of hormone therapy ?

debmary1
debmary1 Member Posts: 8
edited September 2016 in Hormonal Therapy - Before, During, and After

After getting a lumpectomy for Stage 1 BC, has anyone opted out of hormone therapy all together and just treated it with radiation therapy?

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  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2016

    I didn't opt out but several friends did. One is a nurse at St. Jude Hospital. She tried Arimidex and Tamoxifen and both caused brutal SEs. I am sure her ONC recommended one of the others but she said no. She had a double MX and is 8 years out.

    The other one was actually my friend's daughter. She was 41 when DX and refused to take Tamoxifen because it would throw her into early menopause. Idk why she didn't go with another one.

    It's your call, your body and your life. A number of ladies have suffered with debilitating effects from the drugs. I have taken Tamoxifen for 4 of the 5 years since my DX. I have had sleepless nights and joint pain but other than that not much discomfort. Everyone is different. If it had severely affected my quality of life I don't think I would have taken it.

    Good luck.

    Diane

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  • dtad
    dtad Member Posts: 2,323
    edited July 2016

    I have opted out of anti hormone therapy for many reasons. Im 63 and was diagnosed last year with IDC and ILC. Node negative. I had a BMX and no other treatment. I have multiple autoimmune disease which is already very debilitating. I refuse to take anything which will have more of a negative impact on my QOL. Lack of estrogen is good for hormone positive bc but its bad for almost every other organ in your body. I have decided to lower my estrogen naturally with supplements, exercise, and weight reduction. I have lost 25 pounds since my diagnosis and now have a normal BMI. My oncotype was 27 but even my MO felt the risks of chemo were too great for me. This a a very personal decision and I respect all of them. Good luck to all fighting this disease....

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  • debmary1
    debmary1 Member Posts: 8
    edited July 2016

    Thank you. Tough decision for all of us..


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  • crazemaze
    crazemaze Member Posts: 10
    edited July 2016

    I am strongly considering not doing hormonal therapy. I'm 46 and have 2 blood clotting disorders so in addition to taking a AI for 5 Years will have to get monthly shots of Zoladex in my stomach since I haven't been through menopause. Also my Oncotype score was 9..so really really may not move forward. Quality of life is way more important to me and I know I will have major side effects.

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  • Milkdromeda
    Milkdromeda Member Posts: 7
    edited July 2016

    Right now not taking it. I am scared to death really. The main factor is uterine cancer SE.

    I am dealing with Global Lymphedema at the moment. That is enough.

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  • Artista928
    Artista928 Member Posts: 2,753
    edited July 2016

    I just spoke to my gyn about the uterine cancer possible SE and suggested why not just take my uterus out. I'm 51 and don't need it anymore. She said the risk of issues from the procedure are higher than the possibility of getting uterine cancer.

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  • JAK1960
    JAK1960 Member Posts: 1
    edited September 2016

    I'm wondering the same thing....what did you decide?


    Thanks

    JAK

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  • dtad
    dtad Member Posts: 2,323
    edited September 2016

    I agree with the doctor. Getting a hysterectomy is major surgery that carries its own risks. The risk of uterine cancer is very low. Good luck to all making these tough decisions!

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  • Revco01
    Revco01 Member Posts: 1
    edited September 2016

    I will be finishing up Radiation next week after 30 treatments. I am thinking I am not going to take the Tamoxifen. I'm 42 and was diagnosed with DCIS. No history of BC in the family and my Oncotype DX score came back at a 9. Low. I am overall healthy, active, eat well, never smoked . All the side effects that I have read on this drug is just too much. I will do my checkups every 6 months and I will say a prayer that I'm doing the right thing by not taking it. It really can make you mental weighing the options and risks.

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  • etnasgrl
    etnasgrl Member Posts: 650
    edited September 2016

    I'm of the opinion of at least trying it.
    I was a nervous wreck when it was time for me to get the prescription filled. I had heard so many horror stories of God awful side effects. Then, one of the ladies here told me something that just really stuck with me.....most women do fine on the drug, but you never hear about them because they are out there living their lives. It's the ones who suffer with side effects that are vocal and complain because they are looking for help, answers, and support.
    I decided to give it a shot as I absolutely do NOT want to go down this road again, if I don't have to! I'm so glad that I did and do not regret my decision at all. Here are my side effects: Hot flashes maybe once or twice a month and night sweats about once a week. That's it.
    Prior to be diagnosed with breast cancer, I had uterine fibroids. The Tamoxifen is causing the fibroids to grow, however I was warned that could happen beforehand, so I was prepared for that.
    I am having a hysterectomy on October 4th, removing everything but my ovaries. I will continue to take the Tamoxifen.

    The bottom line is you simply don't know how your body will react. You may be like a lot of women and not experience any side effects or ones that are very doable.
    Also, keep in mind that if you try it and do end up suffering, you can stop taking it.
    Obviously, the choice is yours and you need to make the one that you feel is best for you. Smile

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

    The below general information only applies to a person who has invasive breast cancer, that is hormone-receptor positive, HER2-negative, and who has received the OncotypeDX test for invasive disease.

    For information only and (as always) subject to confirmation with one's Medical Oncologist, the average Recurrence Risk shown in the node-negative (N0) and node-positive (1-3 N+) test reports and associated with particular "Recurrence Scores" are based on studies of patients who all received tamoxifen (or tamoxifen plus chemotherapy). Thus, if a patient declines endocrine therapy, their risk of recurrence would be much higher than shown in their Oncotype test report.

    The test reports do not include an estimate of recurrence risk without any endocrine therapy. However, one's Medical Oncologist can provide an estimate (e.g., an extrapolation based on the potential risk reduction benefit of tamoxifen or an aromatase inhibitor).

    With that additional information in hand from their Medical Oncologist, some patients may still choose to decline endocrine therapy, after considering their personal risk / benefit profile in light of their personal risk tolerance. But it would be important to understand that the recurrence risk information provided by the OncotypeDX test for invasive disease "assumes" 5-years of endocrine therapy (e.g., tamoxifen, an aromatase inhibitor).

    Best,

    BarredOwl

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  • dtad
    dtad Member Posts: 2,323
    edited September 2016

    Hi all. I guess what I'm confused about is how do they really know. Are there really studies to confirm these numbers or are they guessing? As far as I know there are no studies that actually follow women that refused anti hormone treatment, nor will there ever be. Who would fund it? Honestly it wouldn't change my personal decisions but just confused about it. Good luck to all....

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