Uterus and tamoxifen

MTNCLMBR

I have ER pos IDC, and will need to be started on Tamoxifen soon. My concerns after researching Tamoxifen are uterine thickening. I have a consult with a gynecologist to inquire about possibly getting a uterine ablation or a partial hysterectomy to just get rid of the whole uterus problem. I don’t want to deal with spotting, feelings of fullness, or having to get routine uterine ultrasounds or biopsies. Would it be beneficial to just get rid of the endometrium? I’m 36. I don’t want to remove my ovaries bc having to take an aromatase inhibitor instead of tamoxifen sounds a worse than tamoxifen. I just don’t want to be worrying about my female area. I also still want a sex life. Please advise!

MellieTX

I’m in the same position-42 years old, and want tamoxifen. On Tuesday I’m meeting with the MO, and if I don’t have to do chemo, I’m making the appointment for the partial hysterectomy, hopefully next week. Had lumpectomy 10 days ago and finishing rads (SAVI) on Monday. If I’m doing chemo, I’ll do the hysterectomy when I’m done. The thought of having to worry about periods and possibly pregnancy (I have very irregular periods) is more than I want to deal with. My sex life is going to be complicated enough...

Artista964

chances of getting uterine cancer is like 1%. I have a few 4cm fibroids in my uterus. Tamox can make me feel crampy at times with these fibroids. My gyn doesn't want to take uterus out. Says other complications can happen. If it is unbearable then ok. I'm 53 in menpause and have no use for it. Make you find out all possible complications.

gb2115

Tamoxifen doesn't guarantee you will have uterine problems. My understanding is that they don't really do routine ultrasounds if you are young. I think the uterine problems are for older women. That said, my gyn is going above and beyond by doing a yearly ultrasound on me even though she said she's only seen problems ONE time. But I don't think it's standard of care anymore, unless you are having problems.

NotVeryBrave

I wanted - and was denied - a baseline US of my uterus before starting Tamoxifen. I was told that it's not done and if any problems occurred - well, they'd look into it then. I asked both the MO and GYN.

I was on Tamoxifen for only 3 months and quit because of a number of concerning SE's. I recently had an US done for an episode of really bad pelvic pain. My uterine lining is 1 cm and I have a cyst on one ovary.

Chemo put me in menopause - no period for more than a year and FSH indicates so. I was regular before chemo, even though I was 50. So now I'm supposed to wait and re-evaluate in 3 months.

I wish I had known what was going on before I started Tamoxifen. I don't really want to do anything about it - hoping it will resolve on it's own. I don't want to deal with a biopsy and really don't want a hysterectomy. I guess a D&C if necessary would be okay.

NotVeryBrave

So now the endometrium measures 1.6 cm and the ovarian cyst has increased in size similarly and has a septum as well. My GYN called yesterday to discuss the results and thinks that the best course of action is to do a D&C. If abnormal cells are found then the recommendation would be a hysterectomy. She also mentioned a possible laparoscopy for the cyst but thought that could wait.

I'm wondering if I should be talking to my MO or seeking a gynocologist oncologist opinion about this. I'm concerned about doing things the right way. I only had one great aunt with breast cancer, but my mother's identical twin had ovarian cancer and there's lots of prostate cancer on both sides of the family as well as pancreatic and lung cancers. I did have genetic testing that was negative for like 28 mutations.

I only took Tamoxifen for 3 months and have been off of it for 6 months.

Lula73

NotVeryBrave-If it’s not one thing it’s another with this whole cancer thing! You should at least let your MO know about it if he’s not already copied on everything. I ended up doing a full on hysterectomy: ovaries, tubes, uterus & cervix. Tamoxifen gave me PEs so i had to stop it and I tested +for an ovarian cancer gene mutation. At first it was just going to be ovaries and tubes. Then when the GYN found out I’d done 2.5 months on tamoxifen the statement on the uterus was, ‘then it needs to go too.’ Cervix was taken for different reasons. I’m so glad I did it, surgery was one of the the easiest ever, no regrets, no worries about uterine or ovarian cancer, no pregnancy worries, and if it’s not TMI, no vaginal discharge is life changing. I’m on letrozole now and SEs are MUCH less severe.