Any serious side effects from Tamoxifen?

BioAdoptMom
BioAdoptMom Member Posts: 358
in Breast Cancer #1
I know I am facing some type of anti-hormonal treatment after chemo (if my oncotype determines I need it) and rads. I am pre-menopausal so far as I know, Tam is about the only option, right? My onco did mention it. I will see him again on the 19th and plan to ask about it then, but in the meantime I was hoping those of you who are or who have been there could comment. I am already at high risk of uterine cancer and blood clots because of Polycystic Ovarian Syndrome and I am already very concerned about taking something for five years which will increase that risk. The blood clots especially scare me because they can happen so suddenly. So, has anyone experienced these types of side effects or do you know someone who has? What did you do to keep the estrogen at bay if you could no longer take it? Are these side effects with Tamoxifen very rare?

Thanks for any comments or advice you can offer from someone who is pretty new at all this.

Nancy

Comments

  • NJMom10
    NJMom10 Member Posts: 176
    #2
    My onc recommended seeing the Gyn
    My onc recommended seeing my gynecologist before taking tamoxifen. He said that we should get some baseline tests and monitor any problems that might occur during my 5 year course on tamoxifen. I am worried about uterine and endometrial cancer too, although I did read that it is a low percentage, 1 out of 1000 women, who might get it. You should definitely bring it up with your oncologist, but I would schedule your gynecologist appt too and get that started. I think it helps to have the specialist in charge of the problem area on board with your treatment and concerns.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #3
    after just over 2 yrs I was taken off tamox
    Sugery April 08 completed Radiation June 08 and Aug 08 started tamox...really no issues until about year into it...night sweats, leg cramps, can's sleep-MY onologist insisted on internal ultrasound (unsure of name of test) @ 6 mths and so far thickening of uterus each time-Each time followed up with D & C but then about 2 mths ago I started bleeding (period) after almost 4 yrs of not! ONCE again I started bleeding again this week...went back to onoclogist (took me off tamox) and saw my gyno...at this point I AM THINKING I am not going to try any other med...

    I dont' know % of how much it help vs all the side effects and if the side effects are long lasting and being worse issues then lumpectomy etc...

    Denise
  • BioAdoptMom
    BioAdoptMom Member Posts: 358
    #4
    Thank you both very much! I
    Thank you both very much! I am seeing my GYN (who fortunately has a great bedside manner) this coming Tuesday for my yearly check up, so we will definitely be discussing this. I am not sure if there are other options out there, but if there are I will be considering them.

    Nancy
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #5
    Hi Nancy,
    Im on tamoxifen,
    Hi Nancy,
    Im on tamoxifen, i'm 35 & pre menopausal also. Last year i had a uterine ablation (basically they remove the endometrium/uterine lining), and I had my tubes tied after my last daughter was born.
    I'm also concerned about uterine/endometrial cancers. Sure, it's a very small chance I could get it -but so was breast cancer. My annual pap exam is coming up next month, and I'm going to ask my gynecologist if he can just go ahead & remove everything. I can live with the hot flashes from no estrogen. I'm not going to be using that equipment anymore anyways, so I'd rather just remove the risk of it all.
    *hugs*
    Heather
  • lelly
    lelly Member Posts: 3
    #6
    Heatherbelle said:

    Hi Nancy,
    Im on tamoxifen,
    Hi Nancy,
    Im on tamoxifen, i'm 35 & pre menopausal also. Last year i had a uterine ablation (basically they remove the endometrium/uterine lining), and I had my tubes tied after my last daughter was born.
    I'm also concerned about uterine/endometrial cancers. Sure, it's a very small chance I could get it -but so was breast cancer. My annual pap exam is coming up next month, and I'm going to ask my gynecologist if he can just go ahead & remove everything. I can live with the hot flashes from no estrogen. I'm not going to be using that equipment anymore anyways, so I'd rather just remove the risk of it all.
    *hugs*
    Heather

    DIM
    I am considering using DIM, as a better way . I suggest looking up all the info on this estrogen blocker with no side effects.
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #7
    Some women who are
    Some women who are premenopausal who cannot take Tamoxifen choose an oophorectomy and then go on an Aromatase Inhibitor. When I was concerned about uterine cancer from Tamoxifen they told me they will monitor me and if it happens, then a hysterectomy. I'm sure they will monitor you closely for that. As for the blood clots I wonder if low dose aspirin is an option you might want to discuss with your onc. I haven't experienced these SE but I was only on Tamoxifen for 1 1/2yrs and am post menopausal so have more options. I don't think these SE are common but for sure you need to be aware of the possibility's. Hope this helps,
    jan
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #8
    Heatherbelle said:

    Hi Nancy,
    Im on tamoxifen,
    Hi Nancy,
    Im on tamoxifen, i'm 35 & pre menopausal also. Last year i had a uterine ablation (basically they remove the endometrium/uterine lining), and I had my tubes tied after my last daughter was born.
    I'm also concerned about uterine/endometrial cancers. Sure, it's a very small chance I could get it -but so was breast cancer. My annual pap exam is coming up next month, and I'm going to ask my gynecologist if he can just go ahead & remove everything. I can live with the hot flashes from no estrogen. I'm not going to be using that equipment anymore anyways, so I'd rather just remove the risk of it all.
    *hugs*
    Heather

    i was going to ask same yesterday
    and my gyno said NO reason or need to remove everything..(( am 51 yrs old) and longer recovery

    I have thickening of uterus and now bleeding after over 4 yrs of not..I assume side effect of tamox...so oncologist took me off it..
  • BioAdoptMom
    BioAdoptMom Member Posts: 358
    #9
    phoenixrising said:

    Some women who are
    Some women who are premenopausal who cannot take Tamoxifen choose an oophorectomy and then go on an Aromatase Inhibitor. When I was concerned about uterine cancer from Tamoxifen they told me they will monitor me and if it happens, then a hysterectomy. I'm sure they will monitor you closely for that. As for the blood clots I wonder if low dose aspirin is an option you might want to discuss with your onc. I haven't experienced these SE but I was only on Tamoxifen for 1 1/2yrs and am post menopausal so have more options. I don't think these SE are common but for sure you need to be aware of the possibility's. Hope this helps,
    jan

    Thanks everyone for all the
    Thanks everyone for all the helpful information! I didn't know about these other options so it gives me something to discuss now with my GYN and my MO.

    Nancy
  • em h
    em h Member Posts: 23
    #10
    BioAdoptMom said:

    Thanks everyone for all the
    Thanks everyone for all the helpful information! I didn't know about these other options so it gives me something to discuss now with my GYN and my MO.

    Nancy

    I am ER+, and I am talking
    I am ER+, and I am talking to my oncologist on Tuesday about my options. I saw a site online which showed the survival rate with ovarian ablation or with Tamoxifen is the same. I would rather have my ovaries and tubes taken out now than be on Tamoxifen for years only to end up getting my uterus removed.

    I read that they give the same dose of Tamoxifen to every woman. Is that true? Being small, that scares me.

    I am afraid of that drug.

Discussion Boards