Question about Tamoxifen

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etnasgrl
etnasgrl Member Posts: 650

I'm not at the Tamoxifen stage just yet as I'm still waiting on my lumpectomy, followed by radiation. However, I've been reading up on a lot of the posts here about Tamoxifen as well as researching the drug and it's potential side effects. It seems like many women suffer with some pretty terrible side effects.
Here's my question....
If you had a hysterectomy, do you still need to take Tamoxifen? The reason I ask is because I have uterine fibroids and have dealt with them for several years. (I am 41) Prior to this breast cancer diagnosis, I had considered having a hysterectomy as that is really the only sure way to "cure" uterine fibroids. (And mine are pretty bad....severe cramping and VERY heavy flow for seven days.) I didn't do it because I didn't want to throw myself into menopause, if I didn't have to....so I had decided to just grin and bear it.
I'm thinking that when it comes time for me to be on Tamoxifen, I will absolutely try it. If the side effects are manageable, I will continue taking it for as long as I'm told. If, however, the side effects are terrible and I'm not coping well, I will have a hysterectomy.....IF having a hysterectomy means you do not need to take Tamoxifen. I wouldn't be having a hysterectomy just to have one, there is a medical reason.....it's just a medical reason I've put off.
I hope this makes sense?

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2015

    They would still want you to take the AI's then. They will want you to take some sort of endocrine therapy. Whether your are menopausal or not decides which one they give you.basically.

    Oh and as long as you keep your ovaries and are producing estrogen you have to take the tamoxifen whether you have a uterus or not. :)

    And the AI's have their own list of nasty side effects too.

    You never know until you try them. I stayed on Tamoxifen after my full hysterectomy because I was doing "fine" on it and have some osteopenia and Tamoxifen helps build bone (only IF you are in menopause).

  • etnasgrl
    etnasgrl Member Posts: 650
    edited November 2015

    Thanks for responding!
    Look like either way, I'll be taking something. (But yes, if I have a hysterectomy, I would remove the ovaries as well and not just the uterus.)

    Loopy


    Oh well. I won't complain. Hopefully the side effects won't be too severe! I'm just grateful that they have found medications that help reduce the chance of recurrence. (I've got to keep things positive!! LOL!)

  • ksusan
    ksusan Member Posts: 4,505
    edited November 2015

    Remember that people tend to post when there's a problem. I've found tamoxifen manageable thus far.

  • amylsp
    amylsp Member Posts: 188
    edited November 2015

    I've been taking tamoxifen for 8 months and have had only minor SE's so far. Some women do experience difficult SE's with tamoxifen (and the AI's as well), and tend to post more for advice and support. The women who aren't having as much trouble tend not to post as much, so it can end up seeming that 'most' women will have really bad SE's. It's hard, but try not to imagine that you will have a tough time. As Susan stated above, you will never know until you try.

    Regardless of whether you have a uterus or ovaries, a hormone blocker will be recommended (tamoxifen or an AI). Estrogen is still produced in your body fat after menopause, and some type of medication is needed to deal with it.

  • NineTwelve
    NineTwelve Member Posts: 569
    edited November 2015

    I was diagnosed at stage IV a year ago, and was told there is no cure for me, and the focus would be palliative. My MO put me on Tamoxifen as my only anti-cancer drug (and I get a monthly shot of goserelin, which shuts down my ovaries). Within three months my primary tumor was reduced by 50% and the tumor that was hanging out on my lung had disappeared. It is a wonder drug for some of us, and I am grateful that something so simple and well-tolerated is helping to keep me stable. No obvious side-effects for me, except occasional warm flushes.

    I've wondered, though, about the women who get side effects from it. I never had bad periods; not much cramping or headaches, nausea, all that. Would women with painful, difficult menstruation have more difficulty with Tamoxifen, or less? Or would there be no correlation? Just something I'm curious about.

  • queenmomcat
    queenmomcat Member Posts: 3,039
    edited November 2015

    Etnasgrl: another vote for "minimal SEs from tamoxifen" here. All standard disclaimers apply--what we're experiencing is not necessarily what you're going to experience. More, I'd say don't rush into having a hysterectomy just because you're worried about medication SEs. Because you're made miserable by the fibroids? Well, that's still a valid reason!

  • CAMommy
    CAMommy Member Posts: 437
    edited November 2015

    I was started in tamoxifen after radiation even though a I had a complete hysterectomy (and ovaries removed). I couldn't deal with the SEs so I am on a break and start an AI after thanksgiving.

  • Midgiemoon
    Midgiemoon Member Posts: 174
    edited November 2015

    I am 2 months in on tamoxifen. My first 3 weeks I was foggy and weepy. Yes i have hot flashes and night sweats. But I am feeling a lot better now, and I am back to the gym and doing life. I think that if my $20 3 month supply of tamoxifen will help me, than its in my best interest to take it. Personally I have had more issues from the 33 radiation treatments that more of a drag than the tamoxifen SE's...


    Go into it with an open mind, keep a journal, and take it at the same time every day. Stay positive!


  • 39andhip
    39andhip Member Posts: 164
    edited November 2015

    As others have said, doctors are going to suggest some sort of endocrine therapy - if not tamoxifen then an AI. I've been on tamoxifen for a month now and find it completely tolerable. I worked myself into a tizzy after reading about the SEs some people experienced, but I haven't found it to be bad.

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited November 2015

    NineTwelve, to answer your question (at least for me), I NEVER had issues with my periods except heavy flow that started in my mid-30's. I never had any cramps, never any PMS, no problems at all. I had a terrible time with Tamoxifen.

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited November 2015

    I have been taking tamoxifen since April and have had no side effects other than the occasional hot flash which are also probably happening because of chemopause. My MO says that only a handful of women in her practice have severe SEs from Tamoxifen. Don't fear the tamoxifen!

  • Rosa_Aurora184161
    Rosa_Aurora184161 Member Posts: 73
    edited November 2015

    I've been taking Tamoxifen for about two years. My side effects are mild hotflahses- shivers, mood swings, some insomnia (or wake ups during the night), drier skin and some minimal weight gain. I might be switched to an Aromatase inhibitor in future to complete 10 years of total treatment, I guess. Good luck.

  • Jhmomof4
    Jhmomof4 Member Posts: 6
    edited November 2015

    Just wondering if the side effects are more/less severe for pre-menopausal women? Anybody know if that makes a difference?

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited November 2015

    Hi, etnasgrl. I just wanted to clarify what is typically recommended to someone with your stats:

    Premenopausal i.e. working ovaries (and not high-risk)=Tamoxifen

    Postmenopausal=Tamoxifen OR aromatase inhibitor

    (Certain high-risk premenopausal women are prescribed ovarian suppression/oophorectomy plus tamoxifen or an aromatase inhibitor; but since you are stage 1, grade 1, no chemo recommended, and over 40, I'm guessing this does not apply to you.)

    You might consider running the hysterectomy question by your medical oncologist to get his/her opinion on how that relates to your endocrine therapy. Also ask the gynecologists how each endocrine therapy might affect the fibroids.

  • lala1
    lala1 Member Posts: 1,147
    edited November 2015

    I'm almost 3 years from UMX (2 more weeks!) and have been on Tamoxifen for 2 months short of that. I do very well on it. I was premeno when I started in 2013. Then in 2014 after requesting a baseline TVUS found that I had thickened lining, fibroids and cysts. I'd never really had bad periods till starting tamoxifen, then they just became heavy. In Jan of this year I had a total hysterectomy after much deliberation with my MO and GYN. I'm now about 11 months out and I feel great! At my last MO appt in Sept, he mentioned swapping me to an AI but after some discussion and googling, decided that I would just stay on Tamoxifen since I do pretty well on it. I have joint pain which is helped with turmeric and ginger and magnesium. I had alot of hot flashes just after my hysterectomy but take Peridin-C and iCool and usually have only 2 or 3 a day and they are very mild and quick. I've asked all my docs if they think I should try an AI to get that reduced risk of recurrence and all have said it would only be a percentage point or so and not worth the side effects of an AI. I do know I'm expected to do 10 years on something so after 5 years I may change my mind, but for now I'm sticking with tamoxifen.

    Also, my hysterectomy was so easy. I had everything taken including cervix and ovaries. Spent one night in hospital, was off pain meds by day 3, driving by day 6. I felt like I could do anything by day 10 but made sure I followed my gyn's advice and walked alot and otherwise took it easy. I feel soooo much better!

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited November 2015

    I am having a hard time on tamoxifen. I ache like I have arthritis in all my joints. If I take Motrin I feel like a new woman, but I don't think you can take that stuff every day for ten years. Have to talk to my MO about it

  • rc979
    rc979 Member Posts: 7
    edited December 2015

    NineTwelve, that is so good to hear that tamoxifen has been so beneficial for you. Are they now considering other treatments instead of just palliative care? Best wishes to you.

  • Goodie16
    Goodie16 Member Posts: 446
    edited December 2015

    I'm also now Stage IV, though currently NED. My only treatment, aside from the mastectomy and the craniotomy, has been tamoxifen. I've suffered with pretty awful joint pain on it. My onc took me off of it for 6 weeks and put me on a supplement regiment to assist with the joint pain. I'm now easing back on to my full dose of tamoxifen. We'll see how it goes.

    I also have an appointment with my gyno to discuss having a total hyster (with ovary removal) and then moving onto the AIs. My onc did warn me, though, that if you have side effects on tamoxifen you will most likely have the same side effects on the AIs.

    One thing I've learned is that in this cancer game there are no guarantees. Simply take the best treatment available to you that can fight the cancer without sacrificing your quality of life.

  • Lvbugs
    Lvbugs Member Posts: 64
    edited December 2015

    I had very painful periods prior to being diagnosed with BC. I went to the doctors and was told my pelvic exam was normal 6 months before my visit and was prescribed Ibuprofin. Then a month later was diagnosed with BC. Dealing with that the painful periods took a back seat and then I went into chemopause. Two months after chemo, my period came back for three weeks and was extremely heavy. I had a VUS which showed large fibroids and a cyst on my ovary. I had a TAH LSO on November 9th and recovering well. I kept my right ovary to help not going into surgical menapause and I am feeling great. I am ER/PR positive but I am 45 and both my MO and Gyn said QOL would be better if I kept the ovary and doing ovary suppression wouldn't reduce risk of recurrance as if I were younger. I'm not sure if the Tamoxifen contributed to the fibroids as I was only on it for seven weeks before my VUS. Otherwise I have no other SE and will will continue taking the Tamoxifen

  • coraleliz
    coraleliz Member Posts: 1,523
    edited December 2015

    I've been on Tamoxifen for just over 4 years. My fibroids remain unchanged. My periods became less frequent & have now stopped all together. Perhaps I've slipped into menopause. I'm so close to finishing my 5 years, not interested in switching to an AI or continuing on endocrine therapy past 5 years.

    I really expected my fibroids to grow & cause problems, glad that didn't happen. I have had other GYN issues, mostly growing uterine polyps. These are different than fibroids & I've had them removed as an outpatient procedure.

  • Loral
    Loral Member Posts: 932
    edited December 2015

    I've been on Tamoxifen for 3 years and my fibroids have not grown either. I have a yearly Trans-vaginal exam and everything is fine no problems relating to Tamoxifen.

  • CidneyI
    CidneyI Member Posts: 79
    edited December 2015

    One year in for me with taking Tamo. I started with hot flashes right off, started taking Effexor which helped for a while but now I am back to having flashes but not so bad as they wake me up at night. I have dry skin and dry patches on both palms of my hands which I find pretty odd. My face breaks out a lot now and my hair is dull. I have put on 15-20 lbs, I can no longer wear 95% of the clothes in my closet. I feel bloated like a balloon all the time, the weight gain has made me extremely miserable. I am going to see a Wellness doctor at the end of the month to see if he can help with the weight gain. I talked to my oncologist about it and he just dismissed me, told me to not worry about it. UGH!

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