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AnnaB
Member
12 years ago

Tamoxifen

I have finished chemo and radiation after having bilateral mastectomies.  I started Tamoxifen about a month ago.  Unfortunately because of really low bone density (-4.0) I couldn't start Arimidex which would be preferred as I'm 10 years into menopause.  As tamoxifen can stimulate endometrial cells I'm concerned about the long term risk of uterine cancer, has anyone out there  elected to have a profilactic hysterectomy?  Thanks

 

6 Replies

  • Ladies, thanks so much for your responses.  Tamoxifen was the only option for me because of my low bone density.  So far (one month) no problems with any side effects.  Very reassuring to hear what you've been told about the endometrial Ca risk.  Believe me I am  not looking to have any unnecessary surgery.   Yes the outcomes with AI may be slightly better for post menopausal women but that just isn't an option for me at present.  There is some discussion that Tamoxifen my improve my bone density.  Thanks again.

    AnnaB

  • Ladies, thanks so much for your responses.  Tamoxifen was the only option for me because of my low bone density.  So far (one month) no problems with any side effects.  Very reassuring to hear what you've been told about the endometrial Ca risk.  Believe me I am  not looking to have any unnecessary surgery.   Yes the outcomes with AI may be slightly better for post menopausal women but that just isn't an option for me at present.  There is some discussion that Tamoxifen my improve my bone density.  Thanks again.

    AnnaB

  • Tamoxifen can cause abit of endometrial thickening and harmless cysts which is not a precurser to uterine cancer(so my oncologist told me).However,if the thickness goes to 8mm or if there are polyps/growths then they would investigate further.I had a pelvic ultrasound at the halfway mark(almost 3yrs) but that was because I had pv spotting.I didn't have any  thickening but did have cysts in the endometrium which were of no concern..I know if I was worried,my GP would order another one in the future. Post menopausal women can have Tamoxifen.It basically blocks eostrogen from entering cancer cells which are eostrogen receptive.After menopause,your adrenal glands produce some eostrogen instead of your ovaries.So Aromatase inhibitors stop adrenal glands from releasing or producing(not sure which) eostrogen.But you still might have some eostrogen coming from fat cells.So as I see it,it's 6 of one and half a dozen of the other! Aromatase inhibitors have an ever so small advantage over Tamoxifen(after menopause) but worse side effects.My oncologist is very pro Tamoxifen and doesn't want to "rock the boat" cos this drug kinda agrees with me.I guess it depends on your oncologist's view and also your own individual bc experience/age/makeup/pathology etc.If you have a good GP then perhaps you could discuss your concerns with her/him about having a pelvic ultrasound in the future?Even if it's just for peace of mind. I actually think it wouldn't hurt to be checked at the 2 or 3 year mark of taking Tamoxifen-why not! My GP is very considerate and listens to my concerns.As much as I like my surgeon and oncologist,their attitude is "don't go looking for problems"-tests will just make you anxious. I think it's important to follow your gut instinct and have a good GP who listens.Hope you are travelling well Janet. Tonya xx

  • Tamoxifen can cause abit of endometrial thickening and harmless cysts which is not a precurser to uterine cancer(so my oncologist told me).However,if the thickness goes to 8mm or if there are polyps/growths then they would investigate further.I had a pelvic ultrasound at the halfway mark(almost 3yrs) but that was because I had pv spotting.I didn't have any  thickening but did have cysts in the endometrium which were of no concern..I know if I was worried,my GP would order another one in the future. Post menopausal women can have Tamoxifen.It basically blocks eostrogen from entering cancer cells which are eostrogen receptive.After menopause,your adrenal glands produce some eostrogen instead of your ovaries.So Aromatase inhibitors stop adrenal glands from releasing or producing(not sure which) eostrogen.But you still might have some eostrogen coming from fat cells.So as I see it,it's 6 of one and half a dozen of the other! Aromatase inhibitors have an ever so small advantage over Tamoxifen(after menopause) but worse side effects.My oncologist is very pro Tamoxifen and doesn't want to "rock the boat" cos this drug kinda agrees with me.I guess it depends on your oncologist's view and also your own individual bc experience/age/makeup/pathology etc.If you have a good GP then perhaps you could discuss your concerns with her/him about having a pelvic ultrasound in the future?Even if it's just for peace of mind. I actually think it wouldn't hurt to be checked at the 2 or 3 year mark of taking Tamoxifen-why not! My GP is very considerate and listens to my concerns.As much as I like my surgeon and oncologist,their attitude is "don't go looking for problems"-tests will just make you anxious. I think it's important to follow your gut instinct and have a good GP who listens.Hope you are travelling well Janet. Tonya xx

  • Hi Tonya, tell me to mind my own business if you like but I'm just curious about why you are on tamoxifen instead of an aromatase inhinitor. It seems to me that oncologists are very keen to put us on AIs if we're post menopause. Did you make a conscious decision to take tamoxifen instead because of the AI side effects?

    I've been on tamoxifen myself about 10 months now but I haven't had a period for about 11 months so I suppose I'm post menopause now. Last time I saw my oncologist - a couple of months ago - she suggested testing my eostrogen levels with a view to switching me to an AI. I said I didn't want to switch because the side effects sound terrible and tamoxifen isn't causing me major problems. I'd prefer to stick with the devil I know I suppose. (I felt that I did have sleeping issues earlier in the year but that seems to have resolved itself).) She just sort of shrugged. She didn't really try to convince me to make the switch so I'm assuming it wouldn't make much difference in terms of preventing a recurrance. And that is what I've read online ie that the AIs are only slightly better in preventing recurrance in post-menopausal women.

    I do worry a bit about the uterine/endometiral cancer thing though. When I raised the issue of having a pelvic ultrasound after a year or two my oncologist said it would show thickening anyway because of the tamoxifen, lead to a D&C and basically be a waste of time and money. So I'm assuming I'm not going to get a referral from her. Have you had regular ultrasounds? Janet.

  • I've been on Tamoxifen for just over 3 years now.I was through menopause when I started.It's abit drastic to have a hysterectomy because of Tamoxifen unless ofcourse,your oncologist advises it.The risk of uterine cancer whilst on this drug is extremely small.Nevertheless,it doesn't hurt to have a regular pelvic ultrasound for peace of mind.From this they can tell the thickness of the endometrium and if there are any abnormalities.The side effects I get from Tamoxifen are hot flushes and sleep disturbances but I take another medication to help with all that.Arimidex can cause joint pains and ofcourse,osteoporosis.It's a great choice isn't it ! Hope you are coping ok with Tamoxifen. Tonya xx