oophorectomy, long term side effects, quality of life

tbayer

trying2staypositive...Any questions/concers/fears, please ask!

I , too, was terrified of the side effects but I have to say so far the hot flashes and night sweats are not as bad as with my "chemopause". I'm going to start the aromatase inhibitor today/tomorrow and I think I'll get a little more side effects. I'm trying to remain open. I figure if the side effects are really affecting my quality of life, I can make changes. My dexa scan shows that my hip and spine are already osteopenic so starting the AI does concern me as my MO says that bone loss and bone pain are the main side effects.

I'm sure I'll have more questions as my journey continues

Luttece

Hi May I ask what was your reaction to Zolade x at first?? I'm also planning to do a hysterectomy.

Thanks,

Linda

4pink101

I just started tamoxifen and will begin monthly injections of zoladex in a few weeks. Is anyone else on this regimen and if so - how have you adjusted to the zoladex? I'm incredibly nervous to start this!

trying2staypositive7

Hey tbayer!

Just wanted to check in to see how you're feeling. Is everything going well? How are the hot flashes treating you? Thank you so much for the encouragement. It really helped. I truly appreciate it. Hope you're doing well

tbayer

Trying2staypositive7...

Thanks for checking in....it made my evening last night!

Having some anxiety. I think it's the change/lack of hormones and adjusting.

Hot flashes not as bad as during chemopause:)

Found out last week I have hypothyroidism. My thyroid has always been OK. Wondering if it was the chemo, oophorectomy or just plain old stress I've been under the past 2 years ( or more!). I started synthroid and f/u w/ my primary care MD in couple wks to discuss what may have caused, can I change it with diet ( hope not to be on synthroid the rest of my life!).

Work is very slow, so I'm trying to take care of me and my kids and take life slow, which is a first for me!!!

Tori

trying2staypositive7

Hey!
Try to take it easy. God has a way of slowing us down even when we want to go full speed! With all of the treatments/surgeries you've been through, it's no wonder you need to rest! I hope that everything works out with your thyroid. Our new normal is hard to adjust to but we can do it because we are superwomen!!! Hope things work out! I'm just counting down till my ovaries are taken out in December! Hoping for no new drama before then! It's always amazing how things will be going smoothly and then bam you go to a routine doctor's appointment and they find something else to take it! LOL! I'll be in touch! Take care & God Bless you!

39andhip

Hi all,

I'm happy to have found this thread as I seem to FINALLY be through the surgical stage of this, and will have to start the dreaded anti-hormone therapy sometime soon. I am not looking forward to it. Because of my age (40) and the fact that I have had a DVT, three MOs have semi recommended ovarian suppression or oophorectomy + AI vs. tamoxifen for me. I think early on in this adventure, I was complacent about my cancer and was thinking I would 'just' do 5 years of tamoxifen, but I've become increasingly more paranoid and am now considering the more aggressive regimen. Unfortunately, I also have severe hip pain from congenital hip dysplasia, and will almost certainly need a hip replacement sometime in the next decade - and that was even before the cancer! Of course, I do not want a reoccurence or metastasis, but nor do I want to be in a wheelchair in my 40s. I'm REALLY struggling with this decision. I'm encouraged by those who have had little issues with the AI route, but also realize that you just don't know how these things are going to affect you.

BBwithBC45

39andhip, I have a history of DVT too. My MO still decided to put me on Tamoxifen and I am taking baby aspirin with it. I was very nervous about taking Tamoxifen initially. With time I stopped thinking about the risk, but I started bruising spontaneously and having rectal bleeding. They told me to stop aspiring and I would not agree to it. So we compromised on taking aspirin every other day and I'm back to feeling uneasy about taking Tamoxifen.

trying2staypositive7

Welcome you two! 39andhip-how are you feeling after your recent surgery? I had mine (diep) in June and still get pooped easily! Lol

39andhip

BBwithBC45 - It is all very nerve wracking, isn't it? I had one MO tell me he would be okay with me taking tamoxifen + a baby aspirin and another tell me that he wasn't convinced that baby aspirin would actually help combat the type of DVT that one might develop in response to tamoxifen (different pathways). Hence the semi recommendation for ovarian suppression + AI. Sooooo... I'm not sure what I'll do. My DVT was right after hip surgery, which MOs agree is different than DVT out of the blue. I've done all the clotting tests and I don't have a clotting disorder. But at the same time, one of the risk factors for development of DVT is prior DVT, no matter the cause, so I keep going round and round.

trying2staypositive7 - Thank you! I feel pretty crappy, honestly, but I guess that was expected. LOL. Overall I feel pretty good, all things considered. The worst problem I am dealing with right now is back pain from trying to walk around like Quasimodo. It's really terrible. I feel good enough to try to get up and walk around but my back pain is preventing me from doing this. Ugh.

BBwithBC45

39andhip - my DVT was also post-surgical, after bunionectomy. It was almost 16 years ago, but I remember like today that the doctor told me back then that I could never been on any hormonal meds for the rest of my life. I mentioned it a few times to my MO and he acknowledged the risk, but still thought it would be beneficial for me to take Tamoxifen. I didn't put up much more fight, because my husband is a physician too and knows my MO quite well.

I don't think I ever had any tests for clotting disorder. I wonder if I should insist on having this done at this point.

39andhip

BBwithBC45 - I don't know if the clotting tests are that useful, actually. I had them done on the insistence of my PS - otherwise he would not agree to do my DIEP recon surgery. However, the hematologist I saw said the tests alone aren't that useful - that 1 in 20 people have some sort of factor that puts them at risk for clotting, yet not that many people will actually develop clots.

peggy_j

Re: getting the tests for the clotting disorders. My MO/hematologist said to not bother, because it wouldn't change her recommendation about me taking tamox. I insisted and it turned out I have one copy of the Factor V Leiden gene. Guess what? My MO gave me extra tips and pre-cautions to take when I travel. And sometimes my treatment varies. i.e. surgeons definitely look at it, and I was placed on a light anti-clotting med during my most recent surgery. So even though the docs act like it doesn't matter, in my experience, once it's on your chart, the docs all see it and it can influence their treatment.

BTW, Fish Oil can also work as an anti-clotting agent.