tamoxifen just doesn't add up for me

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CAMommy
CAMommy Member Posts: 437
edited October 2015 in Hormonal Therapy - Before, During, and After

I had pure DCIS. Treated with lumpectomy and radiation. my MO before we moved (we moved the day after I finished rads) said tamoxifen wasn't for my DCIS but for my other breast. My RO said I didn't need it. But the research I've done shows the risk of contra lateral BC after BC (not even DCIS) is .5% a year. So tamoxifen would make my risk .25% a year. That really doesn't warrant the side effects in my opinion.

I'll talk to the new MO when I see him in a week. But he better have a better explaination on why I need it. It's just not adding up for me.

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  • dtad
    dtad Member Posts: 2,323
    edited September 2015

    I completely agree! Handing out these powerful anti hormones like candy needs to stop! Its the only thing they know to do with estrogen positive bc. Im not denying they can be life saving in some but every case is different and should be handled that way. When the risks outweigh the benefits the decision should be carefully thought out and discussed with your physician. Good luck and remember we have the ultimate control over what we put in our bodies!

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  • Tinkerbell49
    Tinkerbell49 Member Posts: 222
    edited September 2015

    Hi I am also debating on whether or not to take tomoxifen camommy I see you started this month how is it going for you?


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  • CAMommy
    CAMommy Member Posts: 437
    edited September 2015

    I haven't started yet. I should update that. My original MO told me to start right after I ended with rads but my RO told me to wait a month and to talk to the new MO here where I moved to make sure I really need it. RO says I don't need it.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited September 2015

    Clinical trials have shown that Tamoxifen is the gold standard for guys with BC and it is always prescribed for a minimum of five years. Likely that's because we get diagnosed later and can tolerate it better, but it's proven as a life extender. 


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  • Tinkerbell49
    Tinkerbell49 Member Posts: 222
    edited September 2015

    I heard men do a lot better on tomox than women.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited September 2015

    Men and older women do better on Tamox than younger women. I was freaking out about taking it and my onc's advice was: "don't have preconceived notions about any aspect of your treatment".

    We're all different and free to stop any treatment that we don't feel works for us.


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  • Tinkerbell49
    Tinkerbell49 Member Posts: 222
    edited October 2015

    I can't bring myself to take tomoxifen. The prescription was called but I haven't picked it up. Ughh!

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  • Cmo65
    Cmo65 Member Posts: 96
    edited October 2015

    it took me two months to get the nerve to take the Tamoxifen. I've been on it for a month today and so far so good. The first few times were unsettling but after that, I'm fine.

    Traveltext, my doc said the same thing: "why do you assume the worst instead of counting on the best?" Still I hesitated but in the end, I don't want to do this again so I am taking it and hoping it does its job

    Christine

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited October 2015

    Christine, try taking the tablets at, say, 8pm each night or a couple of hours before bedtime. This way, many possible side effects would be during the night. Works for me.

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  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited October 2015

    I've been very fortunate on tamoxifen so far. I have taken it for 8 months now. I have no side effects except for hot flashes. It's true you don't know how you'll respond until you try it.

    Nancy

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  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited October 2015

    I've been very fortunate on tamoxifen so far. I have taken it for 8 months now. I have no side effects except for hot flashes. It's true you don't know how you'll respond until you try it. Speaking of which I need to go take that pill right now

    Nancy

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  • SassyMutt
    SassyMutt Member Posts: 31
    edited October 2015

    I, too, was very concerned and conflicted about taking tamoxifen. But I decided to try it, knowing I could always stop taking it if the side effects were too much.

    I've been on it 9 months now and it really hasn't been bad at all. I've had a few hot flashes and some night sweats. The worst part has been that my hair started thinning in the last month. It's not noticeable to others, but it's falling out quite a bit. I have heard that tapers off. Thankfully I have thick hair!

    But overall I feel that's a small price to pay for a 50% reduction in future risk. 😊

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  • dtad
    dtad Member Posts: 2,323
    edited October 2015

    SassyMutt Have you tried taking biotin? It seems to help with hair thinning. There is also a new home laser treatment that's in a helmet form that has shown really good results. Hope that helps!

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