Hi, I’m just looking for advice or general thoughts on this situation.
I’m 56 and post menopausal. I had extensive high grade DCIS, so had a WLE and am currently having radiotherapy.
I was prescribed Tamoxifen to reduce the risk of a new BC in the other breast. Tamoxifen is the only drug licenced for DCIS whatever your age/ hormone status. Then I had some gynecological problems which weren’t caused by the Tamoxifen, but which Tamoxifen is likely to cause to happen again. Basically, I have an abnormal thickness to the endometrium and a polyp. Tamoxifen causes more thickening and an increased risk of endometrial cancer in post menopausal women. They normally treat the hyperplasia with progesterone, but they can’t if you have breast cancer. The gyne consultant said he thought I should stop the Tamoxifen for those reasons.
The two oncologists at my unit disagree on what I should do. The multi disciplinary team decision was that I should stop it. My oncologist wasn’t at that meeting, he thinks it would be fine to carry on but throw in an annual endometrial scan to check on things, and to stop taking it if and when it becomes a problem.
Or I can take nothing, or I can take Anastrazole, which isn’t licenced because not enough studies have been done to prove its effectiveness with DCIS, but if it’s good for invasive cancer it should be good for DCIS.
The hormone treatments only provide a few percent reduction in risk of a new cancer.
My oncologist thinks the SEs and quality of life issues are better on Tamoxifen than Anastrazole.
And now I need to decide what to do. Ignore the MDT and the gyne consultant, or my oncologist? Take nothing, or one of the two hormone options?
Sorry if this is all a bit complicated, I’m still getting my head round it myself!
gosh, I’m not surprised, Dizzy. I’m on tamoxifen & am fine on it. I do remember the oncologist telling me about the risk of uterine cancer, but that it was easily treated & to report any bleeding/symptoms promptly, but I’ve never had gynae problems. If you decide to go ahead, then maybe on the basis of having an annual scan?
ann x
Oh Dizzy it doesn’t look like you’ve been given any steer. I’m on Anastrazole due to being post menopausal but only because I had a total hysterectomy for endometrial cancer, when I was pre menopausal! So far the side effects seem to have stabilised (3 months in) and auricular acupuncture has minimised hot flushes and anxiety. I was told side effects of Anastrazole less than tamoxifen. Is Anastrazole licensed in other countries for dcis I wonder? It’s such a confusing time for you. I wonder if you can have another opinion. Sorry probably not helpful other than to say I found all the scans I had wearing after a while and the hysterectomy a relief in the end. Much love xx
The scan wasn’t too bad, it was the biopsy and polyp removal…I’m thinking it must be the equivalent of a man having a prostate biopsy. The gyne consultant said they’d have to do it all again if I have any more bleeding more than six months after the last biopsy, and it’s likely to keep on happening if I carry on taking Tamoxifen
I didn’t realise you’d had endometrial cancer, it does seem to be easier to treat in the early stages than breast cancer. But BC must have come as even more of a horrible blow for you, you’d think you’d already been through enough.
I’m worried about the risk of not taking anything, though the MDT were happy with that I suppose. But my oncologist clearly would prefer that I take something.
I accept that professionals can have different opinions, that’s why people ask for second opinions. But it isn’t making it easy…
Sorry I should have added I had biopsies and polyps removed over about 6 years. Definitely not for the faint hearted. That said the treatment was definitely more straightforward than for BC, although it left me complacent about getting it, as I was told that’s why the ovaries were coming out! Apparently I could have had Anastrazole after the hysterectomy, as it was oestrogen based too. There is a big bit of me that wonders what if! With hindsight and knowing what I know now, I wish I had been offered something. That said I’ve seen other threads for new primaries even with tablets! I’m waiting for generic service at the minute ment, as there’s a strong family thread. Anyway, this is more about me and it should be about you, left in decision limbo. I don’t like dr Google much but I’d be tempted to find out if it is licensed in other countries for dcis x