Change of treatment from tamoxifen to...

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Hi
I was just wondering what other experiences anyone else has had of being taken off tamoxifen, and what alternatives were offered-aromatose inhibitors, oopherectomy?. I don’t know yet that I will be advised to come off it, but have had some scans recently which have showed some endometrial changes, plus ovarian cysts, so I know that may be one outcome. I have an appt to discuss results next week and there seem to be several possibilities, so it would help to hear others’ experiences in similar circumstances.
Thanks, C

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Hi C,

I was in a screening study for ovarian cancer and the routine ultrasound showed endometrial thickening. I didn’t have any symptoms but was uneasy about continuing with tamoxifen. When I next saw my oncologist I said that I wasn’t happy to continue because, as I’m post menopausal, there was the option of an aromatase inhibitor. After a bit of discussion he agreed and I switched to Aromasin (exemestane).

I feel that I’m doing well on it. I have fewer hot flushes and less fatigue, but more importantly I feel more alert. The downside is that I have much more joint stiffness and aches and as my bones are thinning I have to take a bisphosphonate to stop that getting worse. Plus there is more vaginal dryness (so I use Replens). All in all, I am happy with the switch and it was certainly a positive move for me.

I think that my onc would have been happy for me to continue with tamoxifen; it was I who pushed for the switch.

If you are not yet post menopausal then an aromatase inhibitor won’t be on offer. But if you opted to have your ovaries removed then they would be an option. Which one you get offered may depend on local practice. In my area, as a first choice, you get Arimidex if you start out on an AI and Aromasin if you switch from tamoxifen.

Eliza xx

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I have been on Tamoxifen for just a year and it was discussed that I’m probably now Post Menopausal but nevertheless they are keeping me on it for another year to make sure. Then I’ll probably go onto an Aromatase Inhibitor.The Tamoxifen works whether you are pre or post Menopausal but the aromatase inhibitor won’t work at all if there is any chance of still being pre-menopausal.

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Thanks for your replies Eliza and Lynberi.
Cx

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if there is any chance your pre menopausal AIs are actually though to be dangerous as you ovaries would increase the level of hormones that the AI removes… there is some thinking now that if you were premenopausal at the time of the cancer there are benefits to staying on tamoxifen and not changing regardless of presumed changes in your menopausal status… a woman who was on tamoxifen for 3 years was changed to an AI as she had no periods and she subsequently got pregnant.

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Thanks for your reply Lulu,
C