Oophorectomy after a year of tamoxifen

PurpleCat

I'm awaiting an appointment with a gyn/onc surgeon after a flurry of testing revealed an apparently simple but large ovarian cyst marked "probably benign" that came with an off-the-charts estrogen level, both of which can apparently be caused by tamoxifen. Normal CA-125 but awaiting further tumor marker numbers, and I'm planning to beg this doctor to take both ovaries immediately for a number of reasons. I've been tolerating the tamoxifen, with its leg cramps and fatigue and hot flashes and pelvic crampiness, because I don't want the cancer to come back, but if I'm looking at several more years of painful cysts and ultrasounds and just-in-case ultrasounds and tumor marker tests and anxious waits I'd rather just have the ovaries out. As the wait drags on I find myself less and less able to hold it together, and I'm crying a lot over little things. I know we're not supposed to make decisions based on emotions, but the peace of mind that would come from being ovary-less would be worth quite a lot to me. I know there would be some side effects similar to those I'm experiencing on tamoxifen, but I feel like, at this point I'm condemned to either experience estrogen-depletion-related side effects or risk the cancer coming back, and if I have to suffer from low estrogen issues while always looking over my shoulder for breast cancer coming back, then I'd at least like to extinguish all risk of ovarian cancer, painful ovarian cysts, unwanted pregnancy, unpredictable periods, and basically anything that could lead to a long anxious waiting period to see another doctor with "oncologist" in the name.

Just wondering if there's anyone out there who tried tamoxifen and then opted for oophorectomy during perimenopause and would be willing to comment on the differences in side effects, both immediate and long term.

Totallytubular

Hi Purple Cat,

I had some of those side effects with the tamox.. then was taken off as a break. then got a second cancer on the opposite breast.. so they had me take arimidex with lupron (wasn't fully menopausal) for a year. it wasn't bad as I recall.. but I was having fatigue.. wanted less drugs so opted for oophorectomy at 54. it wasn't a bad operation and I think it was easier to take overall. Some things depend on age and where you are with MP.

I did have uterine thickening and cystic ovaries on the tamox, so it was good to get off. if you are post menop. I think I recommend having the surgery or trying lupron. I also have SE from the arimidex. mood, fatigue, memory.. so now I am trying aromasin.. and then maybe back to tamox if SE continue! (good times) but getting close to the finish line. overall an oophorectomy is maybe not a bad thing. my onc said she was glad.. as I had two cancers.

is not bad.. and yes there are things to adjust to for menopause it takes the brain a while to adjust.

more questions please ask? its not fun to have more surgeries so ask or get a second opinions. good luck!

LaughingGull

Hi PurpleCat, how old are you?

I was diagnosed with BC at 47, and got my ovaries removed at 48. Before being diagnosed with BC, I was in perimenopause, with periods every three weeks, constant pain/cysts in my left ovary and I had one episode of bleeding, followed by uterine biopsies and tests that scared me sh*tless.

I made the decision after consulting with my MO, an onco gynecologist, and a second-opinion MO, who said it was a good idea to be very aggressive attacking the hormonal component of my cancer, and that in my shoes she would do the same (oophorectomy + AI).

I never looked back. I am glad I did it. I aged, everything is very dry (vaginal dryness is the worst) and although I have some stiffness when I get up, and the occasional (in my case mild) hot flushes, life is great. I am very active and didn't gain weight. It was great to be young with shiny hair, but you know what? I was aging anyway, and perimenopause in my experience was a horror show. Your ovaries won't keep you young forever if you are already close to 50 -they will shut down eventually AND you will have to go through perimenopause.

Best of luck with your decision. I had osteopenia before the oophorectomy and AI, and in a year and a half I have osteoporosis -still mild, haven't gotten the whole story yet on that.

LaughingGull

Jen2Mom

I am so glad I just saw your post because I was just getting ready to post the exact same thing!!! One year on the tamoxifen, 7 ovarian cysts, one fibroid and constant pain is driving me insanse!!!! My oncologist is suggesting arimidex with lupron for 5 years until I'm ready for menoupause and then letting my body go into natural menopause...do I really want to go through "chemical menopause" and a natural one??? I'm thinking about having my ovaries removed as well...My gynocogist seems clueless as to my hormone cancer treatment and the effects on my body so I really need a second opinon...but to I get one from a medical oncologies, gynocolgist or a gynocotist oncologiest?

B-A-P

Hey !

I was on tamoxifen approx 6 months before I had my ovaries removed. I am 32 !

I wasn't having many side effects from tamoxifen, but I did end up with 4 ovarian cysts at one time which was super uncomfortable. 1 had grown from 2.5 cm to 5 in a matter of 3-4 weeks I think, and two were bleeding cysts. The plan had always been to remove them at some point. I am happy I did , but the menopause is instant. The hot flashes are more constant, and night sweats. I've had joint paint and fatigue, but that waxes and wanes ( and now I'm also on letrozole). Still, it beats the pain and anxiety from the cysts, and my Oncologist said the letrozole is better in some ways than the tamoxifen/

PurpleCat

Thank you, all. I really appreciate your feedback. I had my appointment with the gyn/onc surgeon yesterday and she recommends removing the ovaries and tubes. She has an opening next week so I won't have much longer to wait, thank goodness. I had to have an endometrial biopsy at the appointment because of a thickened lining, and if that comes back bad I'll have to have the uterus out too. Were it not for all the stories on this forum from women on tamoxifen who had experienced endometrial thickening on tamoxifen but had benign biopsy results, I'd be really freaked out about that. I had 3 more pre-surgical tests today: another CAT scan to check for adrenal tumors, a chest X ray, and blood work, and am trying not to think too hard about what fresh can of worms any of those might open up. Ugh. Just wish I could go to sleep and not wake up until it's all over and they have all the test results and pathology reports. It's the one-thing-after-another nature of this roller coaster ride that's killing me slowly. Yay, your CA-125 is normal! Now let's check 3 more tumor markers. Yay, the CAT scan shows a benign looking cyst! But you know, it only shows the pelvis; let's look at the abdomen too. It's like they're utterly determined to find something wrong with me.