To have my ovaries removed or not

CancerinMN

Wondering if anyone else has had this come up. I started Tamoxifen last May. I have had bad side effects - terrible hot flashes, night sweats, terrible insomnia, loss of libido, headaches. I am on the highest levels of neurontin and effexor recommended to try to combat the hot flashes and night sweats. Nothing seems to work. My symptoms seem to be getting worse. I AM ALWAYS TIRED! My blood pressure, cholesterol and weight have all went up. I am on 2 blood pressure meds and one statin. I saw my MO yesterday and he wants to switch me to Aromasin. He wants to put me on Zoladex to stop my ovaries from working and then start the Aromasin 2-3 weeks later. If I have good results, they will remove my ovaries and continue with the Aromasin. I do not have the BRCA 1 or BRCA 2 gene.

Thoughts?

ElaineTherese

Hi!

I've been on Zoladex and Aromasin for over two years. Like Tamoxifen, this form of hormonal therapy has its side effects. Many women on AIs like Aromasin suffer from loss of bone density, joint pain, hot flashes, insomnia, and depression/mood issues. Personally, I have suffered from depression (satisfactorily addressed with Celexa), hot flashes, and now full-blown osteoporosis (and I'm not even 50!). To deal with the osteoporosis, I have just been prescribed a biophosphonate, Fosamax, which can cause osteonecrosis of the jaw and atypical fractures in thigh bones. Yay. If Fosamax doesn't do the trick, I may get Prolia.

Even though it seems like there aren't great options out there, I will stick with hormonal therapy. My cancer sample was 95% ER+/PR+, and I was diagnosed at Stage IIIA. So, I soldier on.

I have thought about having my ovaries out, but I'm pretty close to the average age of menopause (51). My old OB/GYN (now retired) wasn't a fan of taking out healthy ovaries because women who keep theirs live longer. I will talk about ovary removal again with my new OB/GYN this September.

Best wishes!

Shawnp1016

Hi,

I too was on Tamoxifen for a little over 2 years when we discovered it was causing severe liver issues. My oncologist offered to either remove my ovaries completely (I just turned 40 and am no where near menopause) OR medically put me into menopause with monthly lupron shots. I started the shots in February and am officially in menopause. In addition I take Arimidex daily. I'm not going to lie.. personally the side effects for me have been brutal. Hot flashes night sweats weight gain and severe joint pain.

I am in the process of possibly switching meds as I cannot take this another 2 years.

Personally if you are close to menopause than removing your ovaries would make sense, but if not I would reconsider and talk to you OB about other options.

Good luck

farmerlucy

I had mine removed at 55 and still it was very rough. I'd certainly try the ovarian suppression to see how you do on the AI. I did the oophorectomy to move onto anAI and I couldn't take the joint pain, so I went back to Tamoxifen. My recommendation would be to move very slowly here. Best wishes.

Michelle_in_cornland

Please post your stats. I would not rush to ditching your Tamoxifen just yet. You need an overall plan, not just an anti hormonal. You said that you have gained weight on Tamoxifen, but you did not say if you were watching your diet, eliminating carbs, and exercising. Lowering blood sugar can help prevent cancer and help prevent cancer recurrence, if you lower your body mass index. Smoking is also a really bad idea when taking anti hormonals. Your doctor can lower your dose of Tamoxifen for a while, to 10mgs per day, and increase it slowly to prevent miserable side effects. As long as you get to the therapeutic dose, it does not matter where you start. Exercising is very important while you are taking Tamoxifen to prevent achy joints and to prevent blood clots. In my opinion, from a pharmacy perspective, Tamoxifen offers the most benefit with the least amount of side effects. Talk with your doctor about your lifestyle and see what can be done.

gailpet

I was diagnosed last summer and did radiation last fall. I am 50 and my blood tests showed I was no where close to menopause. I have a family history of high blood pressure and stroke/clots so my MO thought I would be safer by skipping Tamoxifen and using an AI instead. I had a choice of monthly shots to suppress ovulation or having my ovaries removed. I chose the ovary removal I wouldn't have to do the shots for so long and to be able to move on with my life easier without a constant reminder. I also had fear of ovarian cancer so I was happy to have them removed to help me with that fear. I had my ovaries and fallopian tubes out at the end of December laproscopically. I have to say, it was more painful for me than I imagined (recovery) since it was abdominal surgery and it took me a few weeks to feel better physically (more like a month!) and that was a bit unexpected (probably just my thoughts that it would be an easier recovery). I had some occasional hot flashes after the surgery. I started on Femara (generic) in mid-February and that's when the bad hot flashes and night sweats started. I was put on a small dose of Effexor at my next MO appointment in April and they may have gotten a bit better in intensity but still not where I wanted it to be so they just upped my dosage of Effexor about a week ago to see if that helps any. So far, it really hasn't made much of a change!

I don't know that by moving from Tamoxifen to an AI will help you with your hot flashes since I have them pretty bad, so don't know that would be a reason to change meds. I also have some joint pain in my hands and knees and am uncomfortable from that. Exercise seems to help a bit but once I sit down for any amount of time, I am really sore and it's hard to get going and it's really sad since I'm only 50 years old with younger kids at home (10 and 12 years old) and I want to keep up with them and their busy schedules!

Good luck with your decision. I know my MO said that if my side effects get to be too terrible that I can go off of them but I want the best chances to prevent a reoccurrence so trying my best to push through. I take Trazadone at night to help with sleeping and anxiety as well. That helps me get back to sleep after I wake from severe night sweats/flashes at least!

Lula73

you mentioned you are BRCA1&2 negative. Did they test you for other genetic variations that would indicate a potential increased risk for ovarian cancer? My BRCA's were negative also, but I came up positive on another one for ovarian cancer. I ended up developing blood clots in my leg and in both lungs on tamoxifen so we had to discontinue it. I was already at the point of knowing the ovaries needed to go and the blood clot issue with tamoxifen pretty much sealed the deal for the ovaries to come out for me. I will start Aromasin after the procedure. Know that there is also data that shows greater recurrence risk reduction using an aromatase inhibitor versus tamoxifen in postmenopausal women – if I remember correctly it's about four percentage points lower recurrence risk. I'll take every little reduction I can get