Before Hormone Therapy Thoughts

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Variable
Variable Member Posts: 77

So another treatment decision to be made ASAP... Tamoxifen or Not! I am completing RADS this week and am expected to begin Tamoxifen upon completion. I am reading terrible things about the SE of this medication. Recurrence can happen on it anyway!! Hasn't my body been through enough without trading one problem for so many others??? I am an admitted pessimist who hates taking any kind of medication. I just can't get my head around this one being a good idea! Pessimists on Tamoxifen, please give me some input????

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited December 2016

    It is really impossible for anyone to intelligently answer your question when your diagnosis and stats aren't listed.

    Many women have no or few side effects from Tamoxifen


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

    Tamoxifen has its risks. My SIL was one of the very unfortunate few to develop GYN cancer from taking it. I would ask to hear of alternatives. I think if you can be put into menopause you could go straight to AI drugs. They tend to be more effective than tamoxifen and dont carry the cancer risk. But side effects can happen and some are permanent. Weigh your risks of recurrence with risks for these drugs.

    I believe I got arthritis from exemestane and a ear ringing annoyance, appear permanent. My severe dry eye and fatigue and bone pain went away after discontinuing the drug.

  • stephincanada
    stephincanada Member Posts: 228
    edited February 2017

    My dear colleague just passed away from tamoxifen-induced uterine cancer. I would consider having a hysterectomy if going on Tamoxifen. I have heard that only 1% of those on Tamoxifen develop a gynecological cancer, but that risk seems high and you can prevent it by a laparoscopic surgery.

  • Variable
    Variable Member Posts: 77
    edited December 2016

    I am sorry for your loss. My MO told me a full hysterectomy will not negate my need for hormone therapy to prevent ER+ breast cancer.


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

    Hi all. I'm one who refused anti hormone treatment for various reasons. I would be happy to talk more about it. Please PM if interested. Good luck to all navigating this disease...

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited December 2016

    A full hysterectomy would not negate your need for anti-hormonals, but it would decrease your chance of uterine cancer to zero. I am doing ovarian suppression and some type of AI starting in January. I was hoping to be menopausal after radiation, but alas, I am not. I am early 50's with a uterus and ovaries of a 40 year old, per my MO and my gynecologist, ugh.

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

    Hi Variable:

    In another thread you noted you had an Oncotype Recurrence Score of 19, and choose to decline chemotherapy. It is important to remember that the recurrence risk information in the Oncotype test report (for invasive disease) is from studies in patients who all received endocrine therapy. I have posted on that before:

    For information only and (as always) subject to confirmation with one's Medical Oncologist, the average Recurrence Risks shown in the node-negative (N0) and node-positive (1-3 N+) test reports and associated with particular "Recurrence Scores" are based on studies in groups 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 that 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 such 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 might 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.

    As far as the incidence of severe adverse events, the risk of endometrial cancers may differ by age per some studies, but please ask your MO to ensure accurate, current information about incidence. The incidence of potential severe adverse events should be weighed against the potential risk reduction benefit of treatment in light of your diagnosis and in light of any relevant medical history, as part of a personalized risk / benefit analysis.

    BarredOwl

  • malvernmama
    malvernmama Member Posts: 3
    edited December 2016

    Hi Michelle in Cornland,

    Sounds like we are in a similar situation. My doctor is suggesting AI after 2.5 years of Tamoxifen proved to be a bit of a failure (I had recurrence of DCIS/Stage 0). But I am still not menopausal, so I would need ovarian suppression first. I am a bit scared of this ovarian suppression idea. What do you think about it? I am 46, just had my ovaries and uterus checked after I stopped Tamoxifen just 2 months ago, and they are both back to very normal and productive organs. Thanks.

  • Kdell63
    Kdell63 Member Posts: 23
    edited December 2016

    BarredOwl,

    Thank you so much for posting that information. My oncologist didn't mention that, from what I recall. I had an oncotype score of 7, so I had my ovaries removed and started AI's - tried them all. They all make me sick. I guess I need to buck up and just stick with one.

    Kathleen


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

    Hi Kdel63:

    ILC is often quite responsive to endocrine therapy, which is good. Have your tried different manufacturers of the same drug substance? Elsewhere ChiSandy has noted that "drug products" from different manufacturers containing the same drug active drug substance (e.g., Letrozole) contain different inactive ingredients. She has found that she tolerates Letrozole from some sources better than others:

    ". . . For one of the AIs, letrozole, the version with the fewest inactive ingredients is not the branded Novartis Femara, but Roxane. Next comes Femara, then Teva. Not surprisingly, side effects seem to be mildest with these three letrozoles, with Roxane the gentlest (and cheapest).

    Why do inactive ingredients make such a difference? Because binders, coatings and fillers can contain allergens, and colors and excipients contain pigments, minerals and mineral salts to which many people are sensitive. A lot of the symptoms of these sensitivities are remarkably similar to the drug's side effects—which when added together intensify the side effects."

    Perhaps you could discuss this matter with your pharmacist, and see if you can obtain a version of your current drug with fewer inactive ingredients.

    BarredOwl

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