taking a break from Tamoxifen

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kika2013
kika2013 Member Posts: 101
edited October 2016 in Hormonal Therapy - Before, During, and After

Hi, all--I'm looking for advice.

I was diagnosed at 42 with a 6mm, grade 1, oncotype 5 ER/PR+ HR- cancer.

I've been on Tamoxifen for nearly 3 years now and I'm pretty miserable. I've gained about 15 pounds (and I'm a small person, so this has meant a lot of buying new clothes as nothing fits any more). I have hot flashes, bad sleep, total lack of sex drive, hair falling out, dryness everywhere you can think of, plus a bunch of other vaginal issues. I'm achy and foggy-brained, too (whether this is the lack of sleep or the drug, who knows??). All of these symptoms have increased dramatically in the last 6-8 months to the point where there's never a time I'm not experiencing at least 3 or 4 of them.

Right now the plan is for me to be on Tamoxifen for 10 years. I honestly can't fathom another 7 years of this. I also wonder if, given the nature of my particular cancer, this isn't overtreatment. I am at such low risk of recurrence to begin with, and when I look at cancer math it tells me that the Tamox is adding a whopping 90 days to my life span.

Unfortunately I don't have a good relationship with my oncologist in the sense that she's not interested in discussing things. I'm a pretty straightforward case and so it's just "10 years of Tamoxifen! That's the recommendation now!). But I'm really wondering at this point how I would feel if I went off it for a few months.

To add to this, my surgeon told me she was surprised anyone was recommending 10 years for my particular case, given the details. So now I keep wondering whether I'm miserable to no good end.

Has anyone discussed a break with their doctor. I'm tempted (and I am SO not this person) to just quit for a few months without telling her. But then it terrifies me. I'd love to hear your stories about this.

Thanks.

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  • Toscaxoxo
    Toscaxoxo Member Posts: 18
    edited October 2016

    Dear kika2013,

    I was diagnosed at 54; my cancer was stage 3C, ER+. After a few months of anithormonals I could not stand the side effects, so I stopped taking them. I have already had eight months with excellent quality of life. It is more likely that my cancer will recur, but I decided that I wanted to live fully for maybe a shorter time than miserably for longer. That said, If I had young children at home, I would be willing to endure the side effects for their sake. I think this is something we all have to decide for ourselves--and it's so hard! I feel lucky that my family supports my decision. I wish you the very best.

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  • rozem
    rozem Member Posts: 1,375
    edited October 2016

    that is one tiny grade 1 low oncotype tumor you had there! I don't know the exact "math" but I would venture to guess your absolute benefit is quite small given those stats. I would ask for that percentage - recurrence risk with and without hormone therapy (I believe Oncotype scores assume you will be on hormone therapy). I would bet the biggest benefit is protecting against another breast cancer if you had a lumpectomy - which you can be aggressively screened for.

    You could try Lupron + and AI if you are pre-menopausal but I doubt you will be less miserable

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  • kika2013
    kika2013 Member Posts: 101
    edited October 2016

    Thanks to both of you for replying--you bring up various details I forgot to mention. I do have young children (2 and 7 at the time of diagnosis, now 6 and 10). I have thought a lot about that aspect of it, too. And I did have a lumpectomy, yes, followed by radiation (no chemo due to low low oncotype, for which I am profoundly grateful). It's hard not to wonder, given the debate that has been going about mammograms and whether they're overdiagnosing cancers that wouldn't ever be harmful, if I fall into that category. And yet here I am taking this drug for years and years. There's also the issue that Tamoxifen is often not prescribed for tumors 5mm and under, so we're talking about a 1mm difference.

    I want to much to do the best I can for myself, but when I think back to how good I felt after surgery and even radiation compared to how I feel now, 3 years later, it's just nothing but decline.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2016

    kika - I'm 3 1/2 years in and really struggling too. At my last appointment my onc said ten years, too. I just don't see it. I took a two week break, then chickened out. My oncotype score was low but it was not inline with my pathology findings, and I keep hearing my onc say "That's a lot of faith to put in that one number." When I balked at taking HT at all.

    Here is my plan. I'm going to take it five years and ask my onc to order the BCI test. Depending on the results I may or may not continue.

    I was going to order a second opinion from Johns Hopkins about whether or not to continue pastfive, but they coordinate with your local doctor. I'm going to see if my PCP can be my local doc instead of my onc.

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  • Girl53
    Girl53 Member Posts: 225
    edited October 2016

    Kika: I really appreciate this thread and understand your dilemma (except I'm not a mom). I don't know what to tell you, but share your pain and questions.

    I have a similar question. My BC was 2mm, grade 1, no LVI, too small even for an Oncotype test (which they tell me is a good problem to have). I have been told my recurrence risk without meds is 6-8 percent, and with meds, something like 3-5. Absolute benefit small, onc said.

    I was on anastrozole for six months, and then developed intense anxiety...so bad that I didn't recognize myself. I stopped taking it a month ago and am due to go in to talk to survivorship nurse (liason to onc) Monday. The thing is, I don't know whether the anastrozole was the sole, or a contributing factor, to this mood change. I have been on meds for the mood change for two weeks now, and want to suggest to nurse/onc that I NOT re-start an AI or Tamoxifen for at least another month or two...until the mood-meds kick in and anxiety is lessened.

    Do you think onc will say it's safe to stay off anti-estrogen drugs for two or three months? And/or, is it time to do a serious cost/benefit analysis with her re: whether I really need to take an anti-estrogen drug at all? I'm scared not to take it, but I don't want to be an emotional wreck.

    I mentioned in another thread that the survivorship nurse had told me months ago that she NEVER recommends that anyone already taking mood-related medications when they start anti-estrogen regimen NOT stop the mood meds for at least a year....apparently, anti-estrogen drugs can cause or contribute to significant mood disturbance in a lot of women? Or is it just that, having made it through diagnosis and active treatment, a lot of women develop depression and anxiety (that may have little to do with the AI or Tamoxifen?)

    Kika, good luck with your decision. Thinking of you. All other insights welcome. Girl




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