Hi Ladies - on another thread I mentioned that I had been for a vaginal scan which showed 14mm thick uterus bulky and cysty after only 10 months of tamoxifen (2023 my endometrium was so thin they couldn’t see it).
I am post menopausal - left mastectomy for multifocal ductal and lobular no nodes, no pin or lvi and good margins (largest tumour 7mm).
Due to the rapid increase in the endometrial thickness I have stopped the tamoxifen (being referred to gynae it looks benign according to the report and referred to my surgeon to discuss next steps).
I don’t want to go onto an AI (I suffer from vaginal atrophy and use vagirux.) I looked at the V3 predict scores and they came out as 5 years 0.1% benefit of HT, 10 years 0.2% benefit and 15 years 0.3% benefit. What would you do??? I am at a loss as to what to do and haven’t ever seen an oncologist - I have tried pushing but to no avail. Just wondering if anyone was in the same boat or if anyone has stopped - I know we are all different and its up to me but Tamoxifen definitely did a job on my endometrium in a very short period of time.
Thank you lovelies
xx
I would wait for the results of your hysteroscopy and biopsy and then discuss the implications of this with the gynaecologist ,if after you have all the information you feel it’s risky to continue Tamoxifen I would ask for an appointment to discuss the risks / benefits of continuing / stopping Tamoxifen with an oncologist . I have been on a similar path but I think you need all the information about your personal circumstances to make the right decision for you .
Hi @joyousjen
I initially agreed to take Tamoxifen but never started it because there is a chance of developing eye problems and I already had suffered a retinal vein occlusion in one eye. I was 56 at the time and was surprised to have been offered it as first line and shortly after being prescribed it I tested post menopausal . My breast consultant who prescribed it said he didn’t really want to put me on an AI ( didn’t say why ) and that if I didn’t get on with Tamoxifen it would be reasonable for me stop hormone therapy . Not everyone is as forward thinking as him though.
The Oncologist agreed that my medical history meant I was unsuitable for Tamoxifen and prescribed Anastrozole. She did my Predict score for adding in hormone therapy on V2 which came out as an extra 0.8% at 5 years to 1.3% at 15 years . At my follow up appointment which was a phone call I was struggling with menopausal side effects though they were rather worse than anything I had during menopause and she said that if I felt I could not continue with Anastrozole I could try Exemestane but if I didn’t get on with that she hinted that she would be fairly ok or at least philosophical about me stopping but discharged me at that time . Shortly after that the joint pains kicked in and after about 5 months I decided to call it quits. I didn’t follow the Oncologist advice and try Exemestane as I thought it would be more of the same - however my friend stopped Letrozole due to joint pain but has tolerated Exemestane for 2 years now.
My breast team initially did not contact me to discuss it as promised but are now supportive . I did worry about whether I should have tried to continue but less so now. I’ve recently joined a local support group and they were all complaining about their side effects - some have had terrible joint problems but kept on taking it although one woman didn’t seem to have any.side effects at all.
So I guess it boils down to what you’re most scared of and the decision becomes less clear when you are low risk.
You may not have seen an Oncologist but your MDT probably has had input on your case from one. From my experience and everything I’ve heard they will probably urge you to continue hormone therapy in some form. Some Oncologists and GPs are happy now for their patients to have vaginal oestrogen even while on AI - maybe now would be a chance to ask that question. As Jill already said it is probably best to get your results first and see if staying on Tamoxifen is an option and how they are going to monitor you. Xx
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thank you to you both for replying that’s really helpful xxxx
Hope everything goes well with your Gynae treatment / results . Xx
I’m sorry to hear you’re having these problems, you don’t give your age. I’m 76 & refused to take Tamoxifen from the start. I had my signing off appointment yesterday & the nurse gave me a figure of an extra 3.2% improvement figure for a recurrence if I took Tamoxifen. Taking my age into consideration, I said I still wasn’t taking it as I was healthy & quality of life was more important to me than quantity. I’ve never been a pill popper, & basically I didn’t want to endure any symptoms or worry what the Tamoxifen might be doing to the rest of my body. I suffer from anxiety & insomnia so didn’t want to risk it. This is a personal choice based on my own prognosis, it obviously isn’t the right decision for many women, but worth asking if it will make enough of a difference to you if you don’t take it. I won’t ever know if I would have tolerated Tamoxifen because I know that I would have worried what damage it might be doing to me. I know most women disagree with my decision that is why you must get your personal prognosis for a recurrence. I wish you well.
Thank you for replying. I am 61 and benefit of hormone treatment over 5 10 and 15 years is 0.1 0.2 and 0.7 according to predict v3 . The only big thing is I am 8/8 er and pr positive and it was lobular/ductal . Xx
Hi, I really don’t understand all these different breast cancer terms and figures, I assume your type would benefit from the oestrogen blockers. I would ask the Breast Nurse to explain everything in detail, the benefits of taking the blockers etc. From what I can gather we all have different combinations, each prognosis is different, so our decisions can’t really be based on anyone else’s cancer. I hadn’t a clue about my own cancer until my appointment yesterday as I hadn’t really been given any figures or proper information I don’t think, but the nurse yesterday was really good & I felt so much better when I left. I must say though that my treatment has been quick & brilliant, I’ve had a lumpectomy, excision & 5 RT treatments, with minimal side effects. My scarring is extremely neat & has almost disappeared. I read the comments on here & feel so lucky as I seem to have sailed through my surgeries & treatment & do not feel as if I’ve had cancer, which may have contributed to my decision not to take Tamoxifen & risk side effects. I had grade 2, stage 2, IDC, 31 mm lump, no lymph node spread. I hope all goes well for you.
Hi, I am 51 (perimenopause) now but had thickening of the uterus and a fatty liver from taking Tamoxifen when I was 50.
After many scans & gyny checks my oncologist suggested stopping Tamoxifen as it was doing more harm than good based on the benefit percentage. Hope this helps a bit.
Hi Kiki were you changed into anything else? X
Just to add I dont think v3 of Predict has been signed off yet and last I heard (quite recently) is that v2 is still the recommended tool to use
Thank you. To be honest I did both and minimal difference x
Just to add my 2 cents, I will be 60 next week and had a local recurrence this year (thank my stars there was no metastasis) of IDC ER+Her2-. When I was 46 I had a lumpectomy, chemo and 33 zaps of radiation. I tried the Tamoxifen and had some very dark thoughts and said nope I’m done. My oncologist was okay with it and after 6 years I didn’t have anymore follow up with MO, RO or breast surgeon.
My point is that I lived my life just fine without Tamoxifen or an AI. Since I am so far out it is called a “very late recurrence” and unfortunately I have since learned that breast cancer is a chronic illness. It can come back at any time and ER+ chances go up each year out. The further you are out from your original ER+ the greater the chance of it coming back. Sucks.
Hi, no I wasn’t, they seemed to think that other things would have a similar effect. Xx
Kiki do you mind me asking grade and stage? X
Sure, 30mm grade 2 invasive ductal, with integral high grade DICS.
ER 8/8 PR 8/8 HER2 negative. I had a lumpectomy & 5 whole breast then 5 targeted rounds of Radiotherapy, no chemotherapy.
All 5 nodes were clear.
Thanks so much Kiki x
Hi, I do find these comments helpful, sort of helps me confirm I made the right choice for me in not taking Tamoxifen at my age. Even taking Tamoxifen the cancer can come back, but for me personally I prefer to live without any side effects & take my chances. I’m back to being 100% healthy & have been so very lucky with my surgery & treatment. I will be devastated if I get secondary cancer I know, just hope it does not happen.
Dear Joyousjen,
I’ve been on Tamoxifen for 2.5 years and am worried I might have uterine changes what made you go to the gynaecologist in the first place, did you have symptoms ?
They are thinking about changing it to an AI but I have osteoporosis in my some of my lumbar vertebrae.
I couldn’t tolerate Letrazole either because of joint pain and other side effects, but am trying Exemestane …. So far so good… so difficult when you hear how well some ladies cope and you feel such a wimp…
Hugs and best wishes for everyone going thru this xx