Tamoxifen - Query regarding different opionions.

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Sampy661
Sampy661 Member Posts: 36
edited June 2022 in Hormonal Therapy - Before, During, and After

Hello everybody on this forum.


Just a little back ground, I was diagnosed over a year ago, completed all my recommended procedures (surgery, chemo, radiation, tamoxifen) all good one year later according to my annual mammogram and ultrasound results and feel as though I never even had cancer let alone endured the subsequent treatments which followed. I realise I'm very fortunate and despite some initial issues with Tamoxifen - I believe I suffer no side effects apart from hot flushes.


My query is, when I spoke with the head of breast surgery (not my actual surgeon) regarding the results of my mammogram and ultrasound, he mentioned I'll benefit from only five years of the medicine due to new information revealing 7 years on Tamoxifen yielded no additional benefits. He's not my oncologist so I smiled and waited for my oncology appointment.


My oncologist has stated, he wishes for me to remain on Tamoxifen for another year or two, then switch to an AI with additional ovarian suppression / removal. My oncologist believes this treatment is superior compared to Tamoxifen, apparently this switch is due to the fact my age in two years will align with the average age of most post menopausal women.


I left his office informing my oncologist we may all be dead by then so let's not make plans.


I guess I feel, since I'm tolerating Tamoxifen so well and my cervical lining and ovaries are excellent at the moment, why would I switch? Why do you suppose the breast surgeon recommended Tamoxifen for five years? Should I listen to my gut and insist I remain on Tamoxifen? Will the Oncologist refuse to treat me if I do so (I'm in the public system).

Is it common for patients who've been treated successfully for BC refuse their on oncologist's recommendations? Am I getting ahead of myself?


Anyopinions would be very much appreciated💗💗💗.



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Comments

  • Rah2464
    Rah2464 Member Posts: 1,647
    edited June 2022

    Sampy there are a variety of reasons you may decide to continue with Tamoxifen - tolerance, bone health concerns would be a couple of reasons. The newer class of AI drugs have been shown to be statistically superior to Tamoxifen but I cannot remember the percentages. I am sure your MO can give you the numbers or perhaps someone on here has a link to those studies.

    I myself have been on tamoxifen for almost four years. The driver for that decision was bone health. I have had however significant side effects and having just recently had an issue with my uterus well I guess I will be moving to an AI.


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  • Quietgirl
    Quietgirl Member Posts: 108
    edited June 2022

    what your MO recommended is currently most likely the standard of care in your situation but yes 5 years from now it might not be and it probably isn’t something to stress about at this point in time. it’s not like tamoxifen is never taken for more than 5 years and you might change your mind as well. I think one of the reasons MO talk about it is so people know that if you can tolerate it the plan is to be taking something for the next 7 to 10 year

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited June 2022

    Talk to your MO if you are worried. I was on it for 5 and them switched to letrozole (generic Femara) an AI after that. I knew someone though stayed on Tamoxifen their whole life and did not want to stop because they were afraid of getting cancer again My attitude was always a little pill was easy to take and better than any needles and surgery. Best wishes to you.

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  • MaleBreastC
    MaleBreastC Member Posts: 65
    edited June 2022

    I was on Tamoxifen for 14?years and tolerated vey wel

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  • Sampy661
    Sampy661 Member Posts: 36
    edited June 2022

    Rah2464 - You gave me an avenue to investigate regarding the issues associated with AI’s and bone, so much so, this alone suggests I’d likely avoid switching despite oncologist recommendation, though, the amount of resistance training I do may mitigate the effects of bone loss, but it’s a factor to consider and something I’ll bring up with my oncologist next year when I see him. Messing with my ovaries seems so extreme after the positive results of my transvaginal ultrasound, though things can change. Thank you.


    Quietgirl - I may be getting ahead of myself, 2 years is a long way away, one thing is for sure, I wouldn’t exceed the amount of time recommended I remain on Tamoxifen. If five years is all I need, then that’s all I’m taking. There was no mention of 7 or 10 years of medication thankfully.


    BCincolorado & Malebreastc - Thanks for the feedback, I’m assuming that patients may indeed have the option of taking Tamoxifen indefinitely if they so chose depending on their relationship with their oncologist? Interesting people would choose to stay on Tamoxifen so long.


    I’ll just add - my understanding is that after another four years of negative test results, should I be so lucky, I’ll no longer require the team of specialists and hospital visits. In fact, I was told that after five years, my chances of reoccurrence was that of someone who’s never had breast cancer. Perhaps this is due to new developments in research? I’ll just mention I’m in Melbourne Aust.


    Anyway, thanks for your time and quick responses, always appreciated and best of luck with all of you. I’m sure I’ll be back here again next year depending on my annual results, fingers crossed.❣️

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  • sunnyjay
    sunnyjay Member Posts: 238
    edited June 2022

    sampy661, I will be at this crossroads soon since I am 5 years post-surgery, and will be 5 years post chemo and radiation by the end of the year. I started tamoxifen in Feb 2018 and have tolerated it well. so will be considering my options soon. My next appt with my oncologist is in Oct at which time he will review the options with me.

    I will also reach out to my reconstruction surgeon for her opinion since she has always given me guidance on avoiding recurrence. I don't know if she is well-versed in tamoxifen vs AIs, but I will also consider integrative and holistic methods to avoid recurrence. I'll keep you posted!

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