Thinking of quitting Tamoxifen

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RdhJoy
RdhJoy Member Posts: 27
edited December 2020 in Hormonal Therapy - Before, During, and After

I had breast cancer in 2018, no nodes, ER positive along with all the details below. Had a lumpectomy for my 7mm tumor along with chemo (oncotype of 28) and radiation. I started Tamoxifen 20 mg in June of 2019. Within a few months, I began having side effects that my MO blew off such as dizziness and headaches. Each month that went by brought new SE’s including insomnia, anxiety, uncontrollable crying, mood issues namely anger, sweating all the time. I was offered Effexor and declined. Personally, I don’t want to take another pill to fix SE’s from another pill. In May of 2020, I started having a few days of light vaginal bleeding. I assumed it was my period returning (hadn’t had one since I started chemo in Jan 2019) since I’m only 45. In June, I started bleeding again and it didn’t stop. It was then I learned of the other SE of Tamoxifen. Was taken off Tamoxifen as it was causing this. Went for my ultrasound and biopsy and was found to be benign polyps. At this point, I was still bleeding and was advised by dr to have a partial hysterectomy. I just had that done (uterus and cervix out) and the drs want me to go back on T. I feel so good—like my old self—and I basically just don’t want to. I know the risks but honestly I’d rather live 5 happy years than spend the next 10 miserable on that medication. I don’t want to do Lupron with an AI either. Messing with my hormones makes me act like a lunatic. Is there anyone who doesn’t take T against medical advice? Is there legitimate alternatives for estrogen suppression?

Thanks in advance for any words of encouragement or recommendations.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2020

    I didn't have hormone positive cancer, so this isn't an issue I can speak to. But every day I read tons of posts about just this same issue. If you go to the search bar, put in Tamoxifen and you'll see lots of responses.

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  • edj3
    edj3 Member Posts: 2,076
    edited September 2020

    Only you can decide if the risk/benefit/side effect ratio works for you.

    I will say that I did try to take tamoxifen, and subsequently stopped because of side effects that greatly inferred with my running. I'm good with my decision. I'm glad I tried it so I can say that I absolutely gave it a shot. Equally, I'm comfortable with stopping that drug.

    None of us can say what the right choice is for you. Just know either way, at least one of us has made the same decision and either continued taking it, or in my case stopped taking it.

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  • VioletKali
    VioletKali Member Posts: 243
    edited September 2020

    I was diagnosed at age 31!I am refusing anti hormonal therapy due to quality of life issues.

    Like you said "I will take 5 good years rather than 10-20-30 awful years.

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  • dawn913
    dawn913 Member Posts: 2
    edited December 2020

    It's really comforting seeing that others have decided not to move forward with the Tamoxifen. I just posted this in another thread but perhaps this one is more applicable.

    "'m having a really hard time on Tamoxifen. I'm barely to almost 2 years on it, probably more like 1.5 years. I'm 41 and feel 60. My hair is super thin, my facial skin now has that crepe paper texture, I only have 1 good week a month where I'm motivated and somewhat happy, I have zero interest in sex, my vagina is super dry. It just feels like no way to live. Yet the small chance I have 1 rogue microscopic cancer cell roaming around in there is reason enough to stay on it. But if I get hit by a bus tomorrow, I would tell you it wasn't worth it at all. My Dr wants me to stay on for 10 years. I'll basically be in menopause the rest of my life. Sorry all, I'm just feeling really sorry for myself and don't know if I should just get off it and improve quality of life. The idea of getting metastatic cancer is horrifying when I could possibly prevent it."

    I'm talking with both my naturopath oncologist and my main oncologist before getting off. I'm still undecided. I'm scared with either decision.

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  • beach2beach
    beach2beach Member Posts: 996
    edited December 2020

    Here is the flip side. I was 51 when diagnosed and pre-menopausal. I was diagnosed, had surgery. Now on Tamoxifen since 9/2017. Yes its sucks some of the side effects though for me they have been tolerable. I was getting headaches and dizziness in the beginning,,I switched to taking it at 4pm each day..and I guess because by the time the full effect of it hits, I'm usually in my downtime getting ready for bed so I don't notice it much. Dryness..a definite add to it I take an allergy pill daily for allergies, I'm like the Sahara. I try to keep up with fluids and use cream. Vaginal..yup it hit there too, not awful just I notice it with sex that it is drier than it used to be..(sorry for the graphics) if I feel I need it I use a Vit E by K-Y that you insert. It helps. Hot flashes,,,they keep on coming. After 4 months on it, my periods stopped. It has taken its toll on me, I feel it and I see it, maybe others don't see it but I do. I just keep saying that I'm doing this to help stave off a possible recurrence. Shit could it happen even while I'm on it? Sure but I would know I did what I could. I need to tell myself that. That is me personally.

    You have to do what you feel is right for you. Speak to your Dr. You would not be the only one who stopped taking or declined it to begin with. You will find support on here.

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  • Jaybird627
    Jaybird627 Member Posts: 2,144
    edited December 2020

    RdhJoy,

    What about Evista? I couldn't tolerate Tamoxifen so my oncologist prescribed Evista for me. It's your body - you make the decisions.

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  • Rain88
    Rain88 Member Posts: 167
    edited December 2020

    RdjJoy, have you thought about taking a lower dose? There are studies out that attest even as little as 5 mg would be effective. I am on 10 mg, as I didn't do too well on 20 mg. My MO ok-ed it and I am doing ok, it's tolerable. Ultimatelly, the decision is yours alone, but I believe it is important to feel you did all you could.




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  • Leidy222588
    Leidy222588 Member Posts: 18
    edited December 2020

    As you can see below, my stats are pretty gnarly. I tried an antihormonal, as recommended. It made me a raving suicidal mess, so I stopped after a few months. Just had my 5 year cancerversary; so far so good. I would never recommend that anyone do what I have done. That's your decision! Just saying I'm still here.

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  • Prahan
    Prahan Member Posts: 75
    edited December 2020

    Are you in ovarian suppression + Tamoxifen or only tamoxifen

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