Oophorectomy? Varied ovarian opinions.

Jojobird

Hello yet again in this candlelit cave we call breast cancer. Once again the doctors have come calling, this time telling me my ovaries need removal. My gene mutation, this replicating little tick, puts me at higher than average risk of ovarian cancer, and so now I must decide. The risks include heart and bone problems, plus a higher risk for cognitive decline. Ladies, I like my brain. I like thinking, I like reading and daydreaming and coherent sentences.

Has anyone here had an oophorectomy? I am 49 and went through chemopause. How did it impact your life, moods, being? I am worried and am trying to weigh pros/cons. Thank you in advance for your thoughts!

farmerlucy

hi jojo - I had an ooph two years ago at 54 - almost 55. I was surprised at how much it affected me - mainly in terms of tsunami hot flashes. I have not noticed any cognitive decline. I don't have any known mutations but I do have an intense family history of early onset BC. Of any of the surgeries I was on the fence about this one. Surgery was easy, recovery was a snap for me. It is also nice to have more even moods. I do take Effexor and that helps. Still - I'm not sure I'd do it all over again.

mustlovepoodles

I had a full hysterectomy, uterus, tubes, and ovaries back in October. It was done laparoscopically and the recovery was pretty easy. In fact, I was begging my doctor to let me go back to work by day 7. I went through menopause in 2013 and had very few hot flashes. The hysterectomy had absolutely no impact on me at all.

El_Tigre

Hi,

I'm on that fence as well. No gene mutation but they would like me to keep my estrogen low. Right now I'm on monthly lupron shots for it, i have been on it since Sept 2015. Now I am weighing the SE of having my ovaries taken out or staying on lupron.

I've heard the same SE as you listed JojoBird. I've also heard libido is affected because ovaries produce testosterone and docs are not too keen on putting some on hormone therapy (like myself ER+/PR+).

I hear good and bad about the oomp. It varies with each person.

Toto06

Hi Jojobird,

I am stage 4 lungs and bone ER+Her2+

I had my ovaries removed on the 3rd of November 2015, I was 49. The procedure had minimal impact (laparoscopy) on my body and recovery was (for me) 2 days. I was advised by my oncologist to have them removed as I have very high estrogen levels. My side effects are hot flashes, I mean lots and lots!! Mood is fine, no real problems there. However, the biggest impact on my life has been without question my libido. I cannot emphasize this enough!!! Dryness is the net result of having your ovaries out and for me the pain of intercourse is just too much to bear and unfortunately I am not in a position to take any of the estrogeon suppositories (Vagifem etc). That said, I was prepared to do whatever.... to give myself the best possible chance going forward. Hope this is of some help.

raven4mi

Hi, Jojobird. I just had bilateral salpingoophorectomy on March 17. I also had a gene mutation that indicated I'm at higher risk for ovarian cancer and my aunt passed away from it. Since I've had my bmx in April, 2016 that was my 6th surgery and was, far and away, the easiest recovery I've had so far (other surgeries were, of course, the initial bmx, subsequent nipple excision, a few infection-related surgeries, and fat grafting.) I am 55 years old and had my hormones tested first because I hadn't had a period in about 6 months and all levels came back post-menopausal so I wasn't expecting any huge side effects and I haven't had any. (Maybe a few more chin hairs to pluck now and again. Ha!) My surgery was also done laparascopically and recovery was super simple with very little pain. I got by with just Tylenol post-op.

Good luck with your decision.

Jojobird

Thank you farmerlucy, mustlovepoo, El Tigre, FM 508 and raven for your thoughtful responses. After discussions and phone calls and emails back and forth with my oncologist and surgeon, I have decided to have only my fallopian tubes removed. It reduces the risk of ovarian cancer but does not have the quality of life impact that ovarian removal does. I had NO IDEA this was even an option until about the fourth phone call with the surgeon, so it's a lesson for me in learning to ask questions and follow my gut. I can always have the ovaries removed later, but after menopause the impact on my heart and cognition will be less risky.

Surgery's on Monday, and my fingers are crossed for a smooth recovery. Thank you all!

raven4mi

Thanks for the update, Jojo. I had no idea that was an option, either!

Great good luck for your surgery on Monday!

PoseyGirl

Hi ladies,

I had an SO March 27...I feel a bit deflated that neither my oncologist nor surgeon discussed drawbacks with me. anyways...!

Over the past month and in an increasing fashion, I have heart palpitations (skipped beat or PVC's) and some dizziness. I also get more tinnitus (high pitched tone that goes for about 5-10 seconds). I've had pulsatile tinnitus in my left ear since I was pregnant with my son 11 years ago, but it's more pronounced these days.

Has anyone had these kinds of symptoms after surgically induced menopause?

Variable

Scheduled for a TLH/BSO on Thursday but have serious doubts about going through with it! I just cannot commit to a surgery with a completely unknown outcome. I am 47, premenopausal. I have had no trouble committing to any other surgery in the past. This one SHOULD relieve my period pain and heavy bleeding, and WILL reduce my estrogen production ( ER+). I have not been able to commit to Tamoxifen either. All of my doctors recommend this for me, I just cannot get on board. I feel like I have used all nine lives and these are bad decisions. I am lost and frustrated!

NotVeryBrave

Variable - Why do your doctors recommend the surgery?

I asked my MO about removing my ovaries and he said that there are benefits to keeping them but suppressing estrogen. I had an aunt with ovarian cancer, but I have no genetic mutations. I was premenopausal before chemopause. They are recommending Tamoxifen for me.

If it's more about heavy and painful periods, what about an ablation?

Variable

Hi NotVeryBrave,

I have been recommended to have the hysterectomy long before my BC diagnosis due to multiple fibroids of all types, heavy bleeding and pain. The addition of the BSO came from my cancer team as they all feel I should reduce my estrogen production to reduce the risk of recurrence. I have also been recommend to take Tomoxifen, but have a fear of the worse case scenario side effects of that drug. I also had a pre tomoxifen baseline ultrasound that indicated my uterine lining is already thick and was advised to get the Hysterectomy/BSO before starting anti hormonals. I would love to just go with doctor recommendations, I just seem to be resistant to doing anything that may cause me further harm.

My one year anniversary of diagnosis is upon me and given I did not expect to be here a year ago I feel like volunteering for anything that may further compromise my health is a really bad idea! I think I have used my nine lives already!

NotVeryBrave

OK. Then it sounds like removing your uterus would be a good idea if you already have fibroids and a thickened lining. The removal of the ovaries can make sense - decreased estrogen and they're already in there taking out the uterus - but if you have reservations, then you don't have to have them removed.

How does that sound to you? Sometimes I just have to hear another thought and it helps to make up my mind.

I'm leery of starting Tamoxifen, too. I'm not sure if I really need it and I seem to always have SE's to things. Still debating ...

Variable

Thank you NotVeryBrave! I cancelled my surgery as I don't feel I should go into it with any reservations! I like your reframing about the ovary removal, and it does make sense. I have been rather frail emotionally since my BC diagnosis, and anxiety is really getting to me.

Your treatments would lead me to believe you are VERY BRAVE! Thanks for reaching out with some logic. Good luck with your tomoxifen decision.

NotVeryBrave

Hey - it's hard enough making these decisions when you are convinced of their benefits!

If you feel relieved then you've probably made the right choice for you. And perhaps you'll change your mind down the road. That's okay, too.

We can all only do what we can at the moment.

Take care -