oophorectomy weigh-in

vampeyes

Good morning all,

I am looking for experiences, opinions from women who have had an oophorectomy. I am 43 with ovarian cysts that cause me pain, fatigue, nausea, mostly when my hormones are high. I currently have a complex cyst on the left and a simple on the right. My gynecologist is recommending removal of my left ovary and fallopian tube, possible the right as well. I am currently working on getting an appointment with my oncologist for his opinion, unfortunately he released me and I have to get a referral.

I am on Tamoxifen and believe it to be the cause of the cysts, but hey who really knows for sure. I have read about the side effects of having the oophorectomy and some sound scarry, so I guess I am trying to weigh the pros and cons/ the lesser of the two evils of early menopause vs the continued cyst issue. Either way eventually there will be a surgery to remove the complex cyst.

Thank you in advance for sharing your experiences,

HUGS

Whatjusthappened

Hi Vampeyes, I just had an oopherectomy and hysterectomy a few weeks ago. I am 48 and was pre-menopausal before the surgery. I will say that for me, I started having some hot flashes within a week of the surgery, but nothing extreme and not many other symptoms other than some surgery-related fatigue and soreness. Recovery from the surgery itself has been pretty smooth. I started on anastrozole (every other day) about a week after the surgery, and the hot flashes/night sweats/insomnia have gotten worse, but now I'm not sure what's from the ovary removal and what's from the AI. I'm developing other SE's as well, but can't separate them out, so probably not much help to you there.

One plus to the surgery is that you will have more options besides Tamoxifen for treatment. Early menopause is obviously a con, but maybe the fact that you are already on Tamoxifen will help you acclimate a little better to the lack of estrogen. I did not take anything beforehand so was pretty much slammed into it, and if I had to do it again I think I would've asked to hold off on the AI a little longer.

Maybe some ladies whose surgery was longer ago can weigh in on their experiences and the long-term effects of early menopause. I think the opinion of a MO would be important. Best of luck to you in your decision!

exercise_guru

I am sorry for posting a strong post about this. I don't want to be this negative but removing my ovaries has been so detrimental to my quality of life. I would explore very option I could before doing that. You could look up the TEXT and SOFT study for more information regarding the cohorts and how they divided them up but the quality of life for women who removed their ovaries and were on Tamoxifen was significantly affected compared to the women just on Tamoxifen ( who also had crap as well but not as severe). the loss of estrogen SUCKS.

I had an open abdominal hysterectomy and ovarian removal in dec 2015.I have not had a positive experience, they won't give me hormone replacement and the tamoxifen is kicking my butt. I wake up with night flashes, have insomnia, Dry aged skin, I have vaginal dryness and pain, Total loss of sex drive, fatigue, helplessly gained 20 pounds doing all I could not to nd still have fatigue that I am not sure is related to treatment of the loss of estrogen. I would push very hard to try ovarian suppression first and I would also look into what birth control if any would not grow cancer but help with ovarian cysts. I also would push very hard and consider trying ovarian suppression and Femara before taking out ovaries. If you can explore every option.

vampeyes

Thank you so very much ladies for weighing in on my dilemma. GP is referring me to a oncology gynecologist, so now I wait and see. I like the idea of exploring other options before having another surgery.

HUGS

gb2115

Just curious, why did your oncologist release you if you are still on tamoxifen? I've been on tamoxifen since spring of 17 and still see mine every 6 months and my understanding is they will follow me to the 10 year mark.

I was just wondering!!

CBK

vampeyes

The ooph itself as a surgery and recovery is a nothing burger. No pain, was out driving and shopping the next day. No pain meds needed.

However..... the aftermath is another story all together. I was peri-menopausal and had the procedure 6 weeks PFC. I tested positive for the BRCA gene. I would never ever have done this otherwise. It honestly has been the most difficult part of my treatment combined with the Arimidex!

I fight like hell everyday with exercise and diet against the joint aches and weight gain. I never had a problem with my weight. I was a tiny little thing that could eat whatever I wanted and I gained 20 lbs after this. 20lbs even though I have an active yoga practice 5 days a week and strength train 3 to 4 times a week and eat a totally plant based diet.

I always wished there was some way out of doing my ovary removal. If I could have done it over I would not have rushed the removal like I did despite my Brca 2 status. Nobody remotely cued me in on the AFTERMATH of this surgery!

I’m sorry if this sounds harsh but it was my reality. Im a pretty tough customer, ooph threw me a real curve ball! Good luck to you.

Ohhhh the intense hot flashes, body aches, and genera mood problems were greatly helped by acupuncture. That reminds me I should probably go back for a tune up soon.

Best of luck to you!

vampeyes

gb2115 - my original onc I fired, the replacement (I only met once) decided that my GP could follow up with me. Our oncologists are overwhelmed with patients, I figured someone dealing with cancer needed him more than I did so I was ok with being released to my GPs care.

CBK - thank you, that's what I want is honesty of how women are affected by this surgery. I think I am going to wait as long as possible on not having it!

CBK

Vampeyes

I’m glad you are holding off. If you ever have any questions about ooph feel free to ask.

Things are getting better for me but it’s a real fight.

My surgeons advice to me after surgery was drink ice water, buy ankle weights and a fan !! Really?

Glad I’ll never see her again! Complete joke.

Celand

Thank you for sharing your experience after having ovaries removed. My gynecologist has been after me to get a complete hysterectomy/oophorectomy, because when I was first diagnosed with BC, she claimed that I really needed to have this surgery because these cancers frequently go "hand in hand", I suppose that once you get one you are bound to get the other. She even told me that if I was her Mom she would want me to have everything taken out. She told me this same information for the next two appointments, so I finally told her that I wanted to get my Oncologist's opinion. She readily agreed that this was a good step to take (I am thinking that she thought that my Oncologist would agree with her). Well, my Oncologist told me that this surgery was not necessary as I was not at any higher risk of getting ovarian cancer especially since I tested BRCA negative. Although taking Tamoxifen does increase my chances of getting uterine cancer by small percentage. My Oncologist stressed that those testing positive for BRCA 1 were specifically at higher risk of getting ovarian cancer. When I told my gynecologist this she did agree that we would monitor me instead to rushing into another surgery. However, she still insists that my ovaries serve no purpose and that I would not be affected by having them removed. When I asked her what I could do since I couldn't take replacement hormones, and she told me antidepressants! I don't know if I will end up having this surgery but thank you to all who have relayed experience with the aftermath of it. That is what really scares me, if I have problems adjusting after the surgery, there is not much that can be done for me and can't put the parts back once they have been removed!

farmerlucy

Celand - You certainly do need your ovaries for many things, especially hormonal balance. Life is hard enough, especially after a cancer dx. My brother is a gynonc and he said that if you are BRCA negative your chance of getting ovarian cancer is like 2%. I only did it to get thrown into menopause and switch to an AI. I was already in my mid 50s. No way in hell would I do it again. Now on the other hand the open hysterectomy was great. I suffered with such terrible heavy bleeding in my 40s and after using Tamoxifen. I should have done that years ago. Your gyn does not seem to be giving you the best advice. I'd get a second gyn opinion.

Lisey

I am 44 and ended up getting a hysterectomy and my Tubes out, but kept my ovaries.. even with a cyst. Studies are now showing that 70% of Ovarian cancers originate in the tubes, so getting them out cuts your risks... while also keeping my hormones. I'm on Tamoxifen as well.

I weighed getting my ovaries out and found that studies show you increase your risk of various types of cancers with Oophs.

Here's some links that may help.

As of 2018, standard protocol is to take the tubes for hysterectomies that are keeping the ovaries intact:

https://www.cancer.gov/news-events/cancer-currents-blog/2017/ovarian-cancer-fallopian-tube-origins

For women younger than 50 at the time of hysterectomy, bilateral oophorectomy was associated with significantly increased mortality in women who had never-used estrogen therapy. At no age was oophorectomy associated with increased overall survival. Oophorectomy was associated with higher mortality from CHD (multivariable hazard ratios [HR] HR=1.23;95% confidence interval[CI], 1.00–1.52), lung cancer (HR=1.29;95%CI, 1.04–1.61), colorectal cancer (HR=1.49;95%CI, 1.02–2.18), total cancers (HR=1.16;95%CI, 1.05–1.29) and all-causes (HR=1.13;95% CI, 1.06–1.21). Results were not statistically different for any of the mortality outcomes when stratified by age at hysterectomy. Though there were insufficient numbers to analyze some cause-specific deaths in women age 60 and older, risk estimates associated with bilateral oophorectomy remained elevated for all-cause, total cancer, and CVD mortality in these older women. Among women with hysterectomy before age 50, oophorectomy was associated with significant increases in risk of deaths from CHD, colorectal cancer, total cancers, and all-causes.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4254662/

Celand

FarmerLucy,

That is what I thought that your ovaries are needed and serve a purpose, the gynecologist who I have been seeing and has not given me the best advice is a young doctor, but she does seem to respect my decisions regarding my body, I have learned to be more assertive when dealing with doctors since my BC diagnosis especially since I have to consult with so many of them. Believe me, I am not going to be easily persuaded to have any type of surgery unless a dire situation. Good to know how low my chances of getting ovarian cancer actually is since I am BRCA negative, I didn't think to ask my oncologist this but am glad that I sought her opinion and made my gynecologist aware of this. She did say at my last appointment that ovarian cancer was very difficult for detect and there is no screening of it. I don't know what she is trying and scare me but I won't be cornered into an oophorectomy!