Start tamoxifen, Yes or No?

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beebee22
beebee22 Member Posts: 45
edited September 2022 in Hormonal Therapy - Before, During, and After

Hi all, I had performed unilateral (left breast) mastectomy + DIEP FLAP end of May and now in my recovery. I was suffered from high grade DCIS. One month post-op, i had my follow up visit in my oncologist office. He advised to start tamoxifen to prevent my right breast cancer risk. The advise is to take it for 5 years. I told him I wanted to have a think.

I visited a breast surgeon in another hospital, the advise was completely different. She told me tamoxifen has very little advantage for my DCIS case. It is more effective for invasive type of breast cancer. I am 42 now, she said why compromise the lifestyle while I will have my menopause in bout 8 years time. I should just do my regular mammogram (annually) and ultrasound (6 mthly).

Anyone has the similar medical history like me? Did you start tamoxifen or have u completed 5 years med now? Please can you share with me your experience of taking the med and what makes you decide on taking the med.

Thank you.

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  • Quietgirl
    Quietgirl Member Posts: 108
    edited July 2022

    A medical oncologist role revolves around having knowledge of medication and the surgeon area of expertise is not that area. That doesn’t mean that one gave you better information then the other just that they are looking at it from different views. If your DCIS was estrogen positive, tamoxifen is probably almost going to be suggested unless there is a serious reason not to. It’s about reducing your chances of cancer in your other breast and I think that’s where things get complicated. If for example your chances were 10% then in theory you reduce it to 5% But I think where your surgeon is coming from though if your chances were 10 that means there is an 90% chance you would not be diagnosed again (I’m just throwing out numbers here each individual is going to be different)

    If you are getting monitored every 6 months then the theory is you would catch any issues quicker so the trade off becomes whether dealing with possible side effects is enough to make you want to lower your risk or whether you are comfortable with your risk level as it is.

    My MO wanted me to do 5 years of tamoxifen followed by 5 of ARIMIDEX but because of prior medical issues and one of the possible side effects I chose not to do the tamoxifen and am only doing the arimidex. But she talked to me a lot about quality of life and side effects and that the end choice was mine (of course I’m only than you so I had other choices in terms of meds). The hard part is that many with DCIS don’t continue to hang around the boards and many who have no or what they consider livable side effects don’t post a lot either.

    It still comes down to your choice. There is no guarantee either way. There is also nothing that states you can’t start a medication and not decide to stop taking it. So even if you get the prescription you are not committed to 5 years.

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  • Buzzbomb
    Buzzbomb Member Posts: 33
    edited July 2022

    I also struggle with tamoxifen. I am 65, diagnosed with DCIS and a micro invasion. Both the DCIS and micro invasion were VERY small (less than 3mm). Surgery was good, no node involvement. I will go for a short course of radiation next week and I am presently taking tamoxifen (I fought it for a good month) but now I think that after radiation I will stop tamoxifen. I HATE taking meds and although I haven’t really had any side effects I worry about the unknown effects. They are checking my lipid panel, so tamoxifen must affect that. What else? What studies have been done? It’s hard to find info and I feel all the doctors say just take it, don’t worry. I am being very proactive and continue to hit the gym, walk a ton and do yoga. I eat a very low carb diet with zero sugar and seed oil. No processed food ever. I am absolutely not overweight.
    we have the right to question things, tamoxifen is not a guarantee of no cancer recurrence just slightly better odds….I see my oncologist later next month and will chat with her, although last time she was quite appalled at my hesitancy and left the room…

    I am a rebel, with a cause


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  • MaleBreastC
    MaleBreastC Member Posts: 65
    edited July 2022

    I took Tamoxifen for 14 years without any side effects..

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  • oldladyblue
    oldladyblue Member Posts: 272
    edited July 2022

    Hi beebee22. I understand you. It is hard to make the decision you are facing. But you won't know how it affects you unless you start the Tamoxifen. Perhaps you will have no side effects at all.

    A woman who did surgery/chemo/rads at the same time as me, with similar cancer and age as me, has zero side effects on her daily estrogen suppression medicine. I had bad side effects on the same medicine and stopped taking it recently.

    You must decide what YOU want to do. I suggest, if you try the Tamoxifen, you will know how it affects you. If you have little or no side effects, fine. If you have medium side effects, you will have to think about it. If you have very bad side effects, you might quit. Your doctor should support your decision no matter which one you make.

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  • beebee22
    beebee22 Member Posts: 45
    edited August 2022

    thanks all for sharing. Its a good summer break for me. Had visited another BS and oncologist, though BS has diff view on TAMOXIFEN, oncologist suggested a 10-years TAMOXIFEN regimen. Will just give it a try and see how it affects me and take it from there. Thank you so much 😘😘😘

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  • beebee22
    beebee22 Member Posts: 45
    edited September 2022

    Started my Tamoxifen 10mg. It was prescribed 10mg every other day. Anyone has the same dosage regimen? Effectiveness suppose to be the same as Tamoxifen 5mg daily. Fatigue is the most prominent side effects iIhave now. Anyone experienced that? Do you take it morning or night? The oncologist told me anytime of the day, just make sure the same time next dose. TQ.

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  • DaughterOfBarb
    DaughterOfBarb Member Posts: 27
    edited September 2022

    @beebee22, I have been on 5 mg daily (my choice, which my MO supports) for about 10 months. I take it in the morning. Initially I had some fatigue, brain fog and night sweats, all of which have dissipated (at least for the time being). The most troubling side effect I’ve experienced is hair thinning, which is ongoing despite taking various supplements and trying prescription Spironolacton. You can try switching the time of day you take it to see if that helps with the fatigue.

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

    I was hormonal positive and took tamox for 5 years with no issues at direction of my MO. Then was changed to letrozole for another 5 after that. Worst thing I had with tamox was some hot flashes. No biggie to deal with though compared to what I'd been through already Best wishes to you.

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