tamoxifen and I are NOT the best of friends

Okay, minor suckage for the day – tamoxifen and I are just NOT the best of friends. I’ve bailed on it again, and now, 5 days later, I’m beginning to feel SOOO much better! That part doesn’t suck, that part rocks.

However, the part that sucks is feeling a) noncompliant and b) knowing that I’m giving up a 7% reduction in risk of recurrence. So while bailing helps me feel so much better, it also invites that cancer fear right on in the door and gives it a nice comfy chair to sit in.

But I HATE, with venom, the way that tamoxifen makes me feel. It’s happened twice now (tried in Oct/Nov and bailed then too) and I just can’t tell you how it makes me feel inside, like I’m filled with an icky black cloud that makes me achy so that I can barely move and then it sucks all the joy out. Stop tamoxifen, and the joy starts to find it’s way in again, light in all the corners, I can see it! And it makes me weep for the wonder of it, to care about the world again, to want to do things, to embrace the amazingness of what is (gardens and friends and music and so many fun things to do!), right? See the difference? No tamoxifen and I can be me. Tamoxifen and well, not me. I can’t be NOT me for 5 years, I just can’t. do. it.

So the alternative is to have my ovaries out, and again, I just don’t want to do it. So I guess what I’m accepting is that I seem to be willing to take that 7% risk, which is a doozie. But at least I’ll feel good while doing it! Scared, but me. And good.

There’s just no perfect solution. The brick wall of cancer treatment vs. quality of life is so incredibly frustrating, I just want to dance my way around it but seem to be blocked for the moment.

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12 Comments

Filed under breast cancer, quality of life, recovery, tamoxifen

12 responses to “tamoxifen and I are NOT the best of friends

  1. Your decisions make perfect sense to me. Simply, perfect sense. I can actually say that I’d make the same decision- not that that has anything to do with the price of eggs. But I agree that we must consider how we feel so we can live comfortably- it’s so difficult and abstract to weigh “risks” against quality of life. A friend of mine stopped taking Tamoxifen, too. If you’d like to chat- she’s awesome. You can find her here: http://www.flickr.com/photos/lindabowman/2221511179/in/set-72157603497224051/ I’m going to link her to this post…

  2. Jacqueline – I can’t tell you how big a difference it made to come home and see your comment, I’ve been feeling like I’m insane to take the risk but then not able to take the pill and the whole thing just makes me so way-too upset. So thank you for your kind words, and understanding. It helps.

  3. I know, I know! How long were you on it? I am on it and don’t like it either, but I think I’m adjusting.

    Thinking about you!

  4. well, I’m sincerely glad that my comment mattered. I will add this… I am concerned about “blanket” prescribing drugs across the board when perhaps the risks are, indeed, quite low for some women all in an effort to “cover all the bases”- it’s like medicating FEAR- and this fear of re-occurrence is often a not-so-scientific thing, at best… or worst.
    some good info is here:
    http://bcaction.org/index.php?page=policy-on-pills
    and this might be good to know about:
    http://bcaction.org/index.php?page=ai-questionnaire

    all the best stuff to you- including peace and comfort in all the decisions that you make for a good life!!!

  5. kathy

    Amanda,
    I woke up this morning and decided to stop tamoxifen, I hate what it is doing to my life, I know how you felt. Are you still off the drug? Can you give an update to let me know how it is going for you?

    Thanks,
    Kathy
    PS> On tamoxifen for 3 yrs

  6. Char

    I quit taking tamoxifen 10 days ago. Seven days after I started taking it my arms and legs would go completely numb while I was “trying” to sleep. Every single night. I couldn’t get up for about 20 minutes after waking. My Dr. says it’s not a side effect. They gave me sleeping pills. A few days later I am talking with someone taking tamoxifen, and she is having the exact same trouble. Has anyone else heard of this? I mean 2 people in the same small town having exact same problem. After ten days off the medicine completely back to normal.

  7. Deb

    43 yrs old and not ready for menopause!
    I am with you. I have been on it since May. It has made me a dark evil human being and I cannot stand myself. I hate the fact that I find myself balling my eyes out lately and having 4 kids under 5 I am afraid I am scaring them. I have to weigh out why the risks myself as you have done. Having the kids makes it hard because I want so much to be there and cancer free for a long time. Please give an update…

  8. Pingback: From tamoxifen to zoladex + femara « Imagine Bright Futures II

  9. Deb – Hope you feel better soon! Many of the women in my young survivors group have little kids too, and I’d say for the first few years post cancer 90% take SSRIs to get through some of the inevitable rough patches. They say it makes it much easier to take care of their kids when they’re feeling a little better! So, there’s help out there, see what your doc recommends.

    Kathy – wow, you stuck it out for 3 years. So impressed. Does your onc. want you to stay on it for the full 5? Hope you feel better whatever you decide.

    Char – really glad the numbness went away and all is back to normal.

    Everyone – There have been way too many deaths from breast cancer in my circles alone this year. My advice – get all the treatment you can stand that still lets you live your life with some quality of life.

    Hugs!

  10. Corinne

    I didnt have a choice whether I wanted to stay on teh Tamox, my doctor told me after my first week on the stuff that I was a “poor metabolizer” what ever that meant, so they took me off. Being premenopausal I freaked as to what my choices were, we figured have the ovaries out…. In the interim I am on Zoladex & Femara to get me “ready”? These two drugs have been great so far, its only been 2 weeks but still. I am prob going to cancel the appt I have for my surgery on March 4th. I dont want to go thru surg again and I am sure at 47 menopause is close …..

  11. Hi Corinne – Did you get a 2nd opinion on the oopherectomy? I’ve heard of docs recommending against it for women in their mid-late 40s, even if they’re ER positive.

    Also, I’ve talked to women in their 30s who’ve had oophs b/c of breast cancer, and they utter two words that scare me (not by themselves, it’s the combo of those two words): “vaginal” and “atrophy.” yikes. ask your doc.

  12. Rose

    I agree with you Anya. I’d never let anybody near my ovaries or try shutting them down in any way for the same reason. I’ve just read too much about the loss of sexual sensations after that procedure. And I feel that my body needs some estrogen to prevent premature aging. But I also had a Stage 1 BC with – nodes and very low risk of reoccurence. I’m just curious if the doctors are recommending these drastic procedures for women who are at higher risk only, or even low risk women like myself, if I were to ever go off the tamoxifen?.

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