I have Tamoxifen side effects; what's your opinion?

crselby
crselby Member Posts: 441 Member
edited March 2014 in Breast Cancer #1
Well, crap. A positive outlook only sets you up for being let down. I struggled with the decision to take Tamoxifen and gave in with the thought (and suggestion fro the onc) that if I didn't like it, I could stop taking it. Immediately after beginning it (Nov. '09) my normal menopause hot flashes ramped up their intesity and frequency, and the leg cramps I out waited came back. So my kindly gyn prescribed Effexor (Jan. '10), which helps but doesn't eliminate. A drug to counteract the first drug. But life was good and I was happy to deal with the minor side effects for some protection against recurrance of my breast cancer.

Now my uterine lining is showing what might be polyps from the Tamoxifen. I need a look with a scope and possible removal of said polyps. Procedures to counteract the first drug's side effects. Crap.

The onc's advice if polyps continue to grow? Take out my uterus. "It's simple and no big deal." I'm almost 59 and breast cancer last year was the first slap in my face about my body betraying me. Now this. Please tell me if you know, how can a doc, or any person, say that removing a major organ is no big deal.

Are there really women for whom removing a major body part is no big deal? I dodged the amputation of a breast with a lumpectomy.

OK, I know I am "borrowing worry" since the gyn hasn't even looked at what is causing the thickening of the endometrium over the past year. I seem to go straight to the worst case scenario. Actually, the worst case scenario is that the thickening represents uterine cancer!

Anyway, I'd like to hear from anyone who would, if she were me, stay on the Tamoxifen and play patticake with repeat polyps, stay on the Tamoxifen and have uterus removed, switch to an AI (Arimidex, etc.) instead of the Tamoxifen and begin dealing with THOSE side effects, or just stop taking the Tamoxifen and other 'anti-estrogen' drugs and deal with the 14% chance of recurrance. Many thanks for your opinions. Please tell me WHY you would choose what you say.
~~Connie~~

Comments

  • mwallace1325
    mwallace1325 Member Posts: 806
    #2
    Connie
    I was on femera and dealing with those side effects for seven months. I'd already had a hysterectomy 10 years ago which had nothing to do with cancer of any kind. I so hated the side effects from femera, I stopped on my own after seven months. Hot flashes went from unbearable to inferno like, the joint pain was horribly painful and I love to walk. Then there was about ten other side effects I won't even mention. I know that one day I just may regret that decision and that I'll have no one to blame but myself but I know for me I just couldn't keep taking that drug. Also, the fact that I felt like crap every day made me feel like a cancer patient every day and that was bad enough during chemo, much less for another 5 years.
    Now, I know there are many others on the board who did not have any side effects from femera and I certainly could be the exception, rather than the rule and please don't make a decision based on me (I had a hard enough time doing that), but I do know what you're going through and will pray that you make the decision that's the right one for you.
    Please discuss the whole thing with your family as well as your doctors.

    marge
  • shy violet
    shy violet Member Posts: 167
    #3
    mwallace1325 said:

    Connie
    I was on femera and dealing with those side effects for seven months. I'd already had a hysterectomy 10 years ago which had nothing to do with cancer of any kind. I so hated the side effects from femera, I stopped on my own after seven months. Hot flashes went from unbearable to inferno like, the joint pain was horribly painful and I love to walk. Then there was about ten other side effects I won't even mention. I know that one day I just may regret that decision and that I'll have no one to blame but myself but I know for me I just couldn't keep taking that drug. Also, the fact that I felt like crap every day made me feel like a cancer patient every day and that was bad enough during chemo, much less for another 5 years.
    Now, I know there are many others on the board who did not have any side effects from femera and I certainly could be the exception, rather than the rule and please don't make a decision based on me (I had a hard enough time doing that), but I do know what you're going through and will pray that you make the decision that's the right one for you.
    Please discuss the whole thing with your family as well as your doctors.

    marge

    marge, thank you...thought I
    marge, thank you...thought I was an alien when it comes to femara...stopped taking mine because of what you describe...the bone pain is still there a lot, but couldn't stand the loss of quality of life I went through...cant afford it either...very very very expensive...
  • seof
    seof Member Posts: 819 Member
    #4
    I was fortunate to have very
    I was fortunate to have very mild side effects from my chemo combos, but I have read posts on this site over the past 3 years from women who had similar experiences to yours. Some stuck it out, some worked with their Dr's and found alternatives. You can go on chemocare.com to look up specific drugs and their uses and side effects. Maybe you could talk to your Doc. about another one. After having double mastectomy, expanders, chemo, radiation, reconstruction,complications, and finally healing up, I can certainly understand reluctance to do surgery, and the desire to avoid complicaitions. You have a tough decision to make. All I can say is keep on asking questions till you feel like you have all the info you need to make the best possible decision. Maybe seek a second opinion form another Dr. to see if you can get more options, or confirmation of info you already have.

    Sorry you have to go through all this. seof
  • shelbyhome
    shelbyhome Member Posts: 145
    #5
    Well first of all I had a
    Well first of all I had a hysterectomy in my 20's not cancer related and it wasn't a big deal to me. In 2001 I was told that I had pre breast cancer A typical displaysa and was on Tamoxifin for 5 years and my cancer grew in spite of it so when I was told this past Feb. that I had breast cancer and it was in the opposite breast as the A typical was I really had always said if it ever turned to cancer they could take them off and that is what I did, I had a bilateral mastectomy and I then tried to take Arimidex,Femara and now I am on Aromasin which is good so far and I pray that it will continue to be. I don't think that anyone but you can make your decision, I did have a Dr. who I went to for a cold that did not know anything about me tell me that I was making a mistake about the mastectomy and when I told my Plastic and Breast surgeon they both said that he shouldn't have said that because he had no facts about me and that it wasn't a matter of if it will show up in the other breast it is when. I prayed about it and just knew that I was making the right choice and I still don't regret it, I wanted to take away as many chances of it returning as I could. I know I am rambling on and I am sorry but you will know what is right for you just make sure that you get as much info as you can and if you need to see a few more Dr.s then do just that. I had wonderful Docs and alot of trust in them. Good luck and I will pray for you also. Hugs Robbin
  • Miss Murphy
    Miss Murphy Member Posts: 302
    #6
    Can't Advise
    Connie, I think we all wish we had some magic answer for you but we don't. I worry about the side effects like your uternine polyps as I also take Tamoxifen. I started off on two different AI drugs and was in severe muscle, joint and bone pain not to mention hot flashes. I stuck it out for over a year and then my onc switched me to the Tamoxifen. After a year, I'm still having hot flashes altho it's down to two or three a night and rarely during the day. I can't remember what it feels like to feel like 100%. I think if I were you, I'd wait and see what your test results show, talk to your doctors and then go for what you feel comfortable with and hope for the best.

    Stay strong. Hugs, Sally

    PS - I feel like removing a body part is a BIG deal - I had a masectomy and it's still a big deal......
  • KathiM
    KathiM Member Posts: 8,028 Member
    #7
    I'm not a good example....
    I had a total hysterectomy as part of the surgery for my rectal cancer. There was nothing wrong with my uterus, in fact, my GYN surgeon said it was the smallest, perfectly formed one she had ever removed.

    BUT my mom had endometrial cancer, and the rectal cancer was just too much 'in the neighborhood'...I am a worrier, so it was an easy choice for me to say "Out, darn spot, out!".

    I have taken Tamoxifen for over 4 years. It does less damage to the bones, and I needed all the help there...chemo made me veer from osteopenia (borderline) to full-onset osteoporosis. And, the AI's can also increase cholesterol, which mine was always high...

    I deal with the joint pain by taking glucosamine/chondroiten. I don't have hot flashes any more.

    I wish I could help you with your choice, but it is so personal....for me, I had no trouble losing an organ that could eventually turn cancerous, and that I was finished with anyway (I had my tubes tied over 20 years ago).

    Hugs, Kathi
  • Teriaz
    Teriaz Member Posts: 4
    #8
    Couldn't tolerate Tamoxifen
    I took Tamoxifen for a couple of months, and it seemed okay at first, then threw me into a horrible depression (as a result of the debilitating fatigue). I am premenopausal so I couldn't take any of the other medications, and had two female doctors advise against having my ovaries removed (another option my oncologist brought up). I am already on antidepressants and just couldn't see trying to get through five years living that way. What was the point of maybe living longer if I was miserable? Not to mention my marriage was already strained from dealing with the year of cancer, chemo, multiple hospitalizations, three young kids with special needs, etc. I don't think it would have survived me on Tamoxifen for much longer!
    So I decided to stop the Tamoxifen. I am taking baby aspirin and vitamin D (two things that they think may help prevent BC or recurrence) and feeling SO much better! If I do have a recurrence, I will have to deal with the possibility that if I had taken Tamoxifen it might have helped prevent it. But for now, I've chosen not to take it and am okay with the statistics. I needed a break from feeling awful after a full year of surgeries, chemo and radiation. I can always change my mind and decide to try it later on if I feel like it's worth dealing with the side effects again. I've heard so many people in my support group, etc. say that they just could not take Tamoxifen or other hormonal therapies because the side effects were too debilitating.
    It's one of those things that you have to decide for yourself, weighing the pros and cons and the risks. I don't think that removing an organ is 'no big deal', but maybe it depends on what you compare it to! Having surgery is never a desirable option, but sometimes it is the best one under certain circumstances.
    Good luck with your decision! I hope you can find a resolution that you feel comfortable with.
    Teri
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #9
    I took tamoxifen for 7 years
    I took tamoxifen for 7 years (not the standard 5 yrs because we didn't know how long I should take it). Towards the end of treatment, I had about 3 uterine biopsies for different reasons. They were not fun, but did provide some reassurance.

    Would I take tamoxifen again? Yes. I am here because of tamoxifen. I had a recurrence after 22 years in 2009, but I NEVER would have had that long remission without it. I was Stage 3A in 1987 and my odds were not pretty back then. The new kid on the block that changed my odds was tamoxifen. And yes I had some weight gain, loss of libido, fatigue, and weird uterine bleeding. All a pain, but I am alive. I am alive. Nuff said!
  • cahjah75
    cahjah75 Member Posts: 2,631
    #10
    Connie
    When my gyn found my breast lump I had been experiencing some bleeding and I was 11 years post menopause. So he did an endometrial biopsy and I had an ovarian ultrasound. Both showed nothing amiss. I had bilateral mastectomy. Even though I'm post menopause I may be taking Tamoxifen rather than Arimidex when the time comes because I have severe arthritis. My sister who took Tamoxifen for 5 years had 1 polyp removed from her uterus. No others ever appeared. I don't think I would rush into removing my uterus but if you have problems then I would because you don't need it any more. I'm 61 and that's what I would do if there were problems.
    Char

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