Forum Discussion
Aliskin
9 years agoMember
Tamoxifen & Uterine changes
I've been taking Tamoxifen for just over 2 years with relatively few problems. It's interrupted my previously regular periods with only probably 6 or so over those two years but a recent scan to check on my fibroids has picked up that my uterus is thicker. I've just seen the gynaecologist, who has booked me in for an investigative D&C. The literature I've read says your uterus thickness on Tamoxifen should range from 4-8mm but my scan says thickness is 18mm. He's told me this day surgery will be to check that I don't have endometrial cancer so I'm feeling really nervous. Has anyone else had this side effect from taking tamoxifen?
13 Replies
- AliskinMemberThanks ladies, all your different experiences have helped me feel better while I wait for the hysterscopy and D&C. Michelle it's good to know that even after hysterectomy that it's possible to still take tamoxifen as I really would prefer to stay away from anything that further depletes my bones. I guess it's all just balancing our risks and finding the best treatment with the least side effects. I also had ER+ & PR+ BC but have had BMX and reconstruction so not much left for getting recurrence but I know its still possible.
- AnonymousNot applicableHi Michelle, it's good to hear things worked out for you. Also a good point about simple and complex hyperplasia. My changes were simple so not so risky. Context is important. My cancer is PR and ER positive, but I'm OK with the risk. :)
- Michelle_WMemberHello Aliskin,
I had been taking Tamoxifen for four years when I had some bleeding. Quick visit to gyno and polyp and thickening found, booked in and had this removed and a hysterescopy, pathology came back not cancer but simple and complex hyperplasia which increases the chance of turning into cancer.
Usually progesterone given by IUD, this was not an option as my breast cancer was ER+ and PR+ 95-100%. Decision was made to do a bilateral salpingo-oopherectomy and hysterectomy and some repairs done, Gyno was up front and said "if you were my wife you would be doing this".
Not sorry in having all this done as now there is no possibility of Uterine or Ovarian Cancer! One less thing to worry about!
I am still taking Tamoxifen and will for the next five and a half years.
Trust the experts.
All the best
Michelle - AnonymousNot applicableAliskin, I agree, you just think you're on top of one thing and another one pops up. It's been very stressful at times. It's lovely having you all to speak to about these issues.
I think it's just important to ask about what your options are. it's good to wait for your results and then it will be clearer. I wouldn't want to talk anyone out of using Tamoxifen, but for me it wasn't the best. nikkid great to hear your monitoring is helping you to stay on Tamoxifen. :) - nikkidMemberHi there, I have a pelvic ultrasound annually whilst still on Tamoxifen. There was some evidence of thickening of the uterine lining...but the ultrasound showed up a polyp and something strange going on in one fallopian tube. Luckily, I quickly got everything sorted...and it was because of the ultrasound that these things were detected as there were no symptoms (and pathology normal). So, I'm happy about that. I have very few side effects on Tamoxifen (other than the usual tiredness, flushes etc) so reckon it's worth it xxxx
- AliskinMemberLucy, that sounds like a good approach to avoid having the hysterectomy. I'd prefer not to have one either for my bones sake too. Good to have this information ahead of my procedure and discussions after I get the results. I know if they tell me to have a hysterectomy they would prefer to remove the ovaries too, but I'd rather keep them for the same reason. Breast cancer just keeps on giving us so much shit to deal with.
- melclarityMemberI was on tamoxifen for 4yrs but was pre menopausal no side effects, my periods were lighter strangely. Recurrence at 4yrs had chemo taken off tamoxifen. Had scans developed osteoporosis and put on Arimidex, and after 16 months now on Aromasin. I have 2 prolia injections a year for bones. X M
- AnonymousNot applicableHi Aliskin, the doctor was initially keen for me to get a hysterectomy and then change to other drugs. I was keen not to do that as I like the benefits to my bones etc of not being menopausal, so that's why I've got the IUD. It might not work and then I'll have to have a hysterectomy. She said that the progesterone is localised. I was on oral progesterone for a few weeks and that was risky. I am at the stage now where I just go for what seems right at the time - still not sure though. I hope everything works out for you. I'm sure it will. It's just tiring after all of the cancer treatment. Waiting for the initial biopsy was a bit stressful, but it was all fine.
- AliskinMemberThanks for sharing your experiences. im not at all keen to start taking arimidex due to the osteoporosis risks when I have a strong family history of that and are already showing osteopenia on bone scans. Tamoxifen has been a breeze for me until this was picked up. I'm peri menopausal so weren't sure if they will suggest a hysterectomy now. Lucy, what was the reason your Dr decided on an IUD? I thought the hormones associated would rule that out as a treatment?
- AnonymousNot applicableHi Brenda5, I didn't have a period for about 2 years but I'm not menopausal. At the 2 year mark they just started again, along with heavy bleeding.