Hi; my history is mastectomy 11 months ago for stage 1 grade 1 multifocal bc biggest tumour 7mm ductal and lobular. No nodes or lvi or pin good margins Er8/8 or 7/8 age 61 post menopausal.
started on tamoxifen which was okay managed 10 months went for abdominal and pelvic scan for a pain that has now gone and scan picked up thickened endometrium of 14mm gone from 1-14 in 10 months. Cystic, bulky and a little fluid. Appointment for another scan and pepelle biopsy in 10 days ( if they can do it… I have vaginal atrophy and retroverted uterus)
my options I guess are stopping tamoxifen. Can’t believe I am now waiting to see if I have a second cancer.
predict gives me 0.3 0.4 0.7 benefit over 5 10 and 15 years (mortality not recurrence)
starting aromatise inhibitors but family history of osteoporosis and I have low bmi.
hysterectomy?? No thanks to more major surgery.
what the heck do I do ?
thank you lovely listeners xxx
Hi Very J , sorry you are facing these investigations and dilemma over hormone treatment. I hope that the endometrial thickening turns out to be benign - a friend on tamoxifen had post menopausal bleeding and scans showed thickening but thankfully further investigations showed nothing of concern. She did her 5 years of tamoxifen and all is ok so far. I’ve been on Anastrozole for nearly 6 years. I had a dexa scan at the start, requested by the oncologist so that they’d have a baseline for my bone density. I don’t know whether my parents might have developed osteoporosis as they died quite young. My dexa scan showed osteopenia, the precursor to osteoporosis as I’m sure you know. It’s apparently not that unusual in women my age (59 at that time). But obviously important to know as the Anastrozole can cause bone thinning. It wasn’t bad enough to merit bisphosphonates, but I take calcium and vitamin D tablets daily and have dexa scans every two years. The third one showed a bit of deterioration but again not severe enough for bisphosphonates. Sorry that’s a long ramble! I’m mainly wondering if you’ve had a dexa scan as that would show whether you have any degree of osteopenia or osteoporosis, to inform your decision re aromotase inhibitors. I’ve felt that despite my osteopenia, it’s worth risking further deterioration as I want to take anything that could lower my risk of recurrence. But it’s all a risk v benefit dilemma. I hope your team will discuss it with you so that you can make the best choice for you. It’s a minefield for sure. Love and hugs, HFxx
Thanks so much happy feet that is really helpful.
my mother in hospital with dementia so that’s something else at the moment too so there has been lots of crying xxx
which brand of anastrazole are you on if that’s ok to ask?
how are you on anastrazole? Hair thinning/ mood/joints? X
Hi Very J , sorry about your mum, your head must truly be spinning atm. Re Anastrozole - I’ve had teva, accord, crescent and amoril (or something like that). I like teva best but they can’t get it any more. Next accord, often get that but not reliably. Tbh I’m not sure for me if it makes much difference but it can for some folk. I have joint pain, mainly in feet and am generally stiffer though I do plenty of exercise, more than pre diagnosis. I find exercise helps in so many ways! And walking became my sanity saver. My hair is thinner, hard to know if just because I’m 6 years older. I felt very anxious and forgetful when I tried to go back to work full time. In the end I retired earlier than planned, at 61. Such a relief but I know I am lucky that it was an option. I have other things that are probably the effects of oestrogen zapping and I do feel ‘different’ but accept that the price is worth paying, for me. And there are plenty of people who seem to have no side effects at all, so don’t assume you’ll get any! They’re less likely to post here I think.
Hope you can have a good discussion with the medics about the best way forward. Xx
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