Seeking oophorectomy/ovary removal recovery stories

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Hi all. My oncologist told me yesterday that my ovaries will need to be surgically removed after I finish chemo next month. If you have had this procedure, would you be willing to share?

- How long ago did you have the procedure?

- What was it like?

- How was it different than what you were expecting?

- What side effects did you get from being suddenly put into menopause?

- What side effects are you still experiencing? Has anything helped or not helped?

- What's your advice for someone about to go through it?

Thanks,

Sharon

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited January 2021

    Hi Sharon,

    We're so sorry you're facing this upcoming surgery. However, we're sure others will be by shortly to weigh in with their experiences.

    In the meantime, you may be interested in checking out the main Breastcancer.org site's pages on Prophylactic Ovary Removal, where you can learn about what to expect, risks to be aware of, and questions to ask your doctor.

    We hope this helps and that others stop by soon to share their stories.

    --The Mods

  • LeesaD
    LeesaD Member Posts: 383
    edited January 2021

    Hi Sharon, I had oopherectomy three years ago. Done laparoscopically at a hospital as an ambulatory procedure. Was sent home a couple of hours after procedure. Procedure and recovery was what I was expecting. I had it on a Friday and remember went grocery shopping with my sister the following Tuesday for Thanksgiving food. I had some bleeding as I probably did too much too soon. After a week or so it was fine and no issues at all. I had finished chemo that prior July, then had radiation which finished in September and had oopherectomy end of November. I had to get Zoladex shots to suppress my ovaries until I could have the ooph scheduled. I was 49 and prior to my chemo I was still getting regular periods. I had my last period the day of my first chemo treatment, didn't get period at all during chemo and then had the suppression shots so I had started the transition to menopause a few months before the oopherectomy. I had some hot flashes which were manageable. I honestly felt more 'even' in menopause as I always had severe PMS and hormonal ups and downs and since being in menopause I don't get the severe mood swings and don't miss them. Now three years out, I've definitely aged quicker due to lack of estrogen and the Arimidex I'm on. I feel like my skin has lost elasticity and hair has thinned. I was a younger looking 49 year old prior to BC and now feel like I've aged very quickly. I'm ok with it as I wanted to be aggressive and get extra percentage points. Advice- the ooph surgery itself was probably the easiest out of the many I had. Just take it easy for a week or so after. I only had the ovaries removed and kept my uterus and recovery not bad at all.

  • BCat40
    BCat40 Member Posts: 241
    edited January 2021

    just curious why you were told you need to have irreversible surgery rather than doing ovarian suppression shots

  • SimoneRC
    SimoneRC Member Posts: 419
    edited January 2021

    Hi sharon0706,

    I had a laparoscopic total hysterectomy (uterus and cervix) and BSO (tubes and ovaries) along with breast reconstruction revision in April 2019. I was originally just meant to have BSO but was changed shortly before surgery. I did not see my GYN ONC again before the surgery and only shortly before surgery learned that the uterus is removed vaginally. That kind of scared me a bit!
    I see you have had a mastectomy so you already know about surgical recovery. It is boring. I stayed one night in the hospital. Came home and did 2 days of Rx pain meds before switching to Tylenol. I looked online for how to get up and move around post hysterectomy without too much strain on surgical area. Was a bit tough as I also had bilateral breast reconstruction revision at the same time. Really more annoying than painful.

    It did feel like the surgeon left chopped up habenero peppers in my vagina! The burning was unexpected. No sex for 8 weeks. Not with your partner, not without your partner. Full pelvic rest. Surgeon said to get and use a good personal lubricant and take it easy when given green light. Scary the first couple of times with vaginal cuff, but all is fine.

    I was post menopausal and had been on an AI for 1 year already so no big changes. My oncologist recommends using Replens regularly, but so far I have not needed it and my GYN says all vaginal tissue is still good. Sometimes I don’t sleep as long as I used to. However, I do have to take a low dose antibiotic after sex as I developed UTI’s.

    My lifting restriction was 5 pounds. I was tired. I did get swelly belly at the end of the day and/or if I did too much. I was really pooped for a month. Feeling pretty darn good at 6 weeks. Keep your feet up as much as possible when not up and about to help fight swelling.

    I too think I have aged a bit more quickly, but still look pretty good for 54. But hey, I had 4 surgeries in 16 months, cancer, 2 colonoscopies, and Covid. A crazy 2 years. So who knows....

    I joined Hystersisters.com It was helpful to read about other women’s experiences. They have groups by week of surgery. I started looking at groups a few weeks before my surgery to see what the ladies a few weeks ahead of me were saying.

    Good luck! The surgery was not that bad. Hoping your surgery goes smoothly. The hormone stuff will most likely be the bigger challenge as it sounds like you are premenopausal.

    Take care!

  • SimoneRC
    SimoneRC Member Posts: 419
    edited January 2021

    Hi Sharon0706,

    ha! Sorry. For some reason I saw hysterectomy in there as well! Maybe my brain has had more glitches than I thought!!!! Good luck!

  • Rambros
    Rambros Member Posts: 78
    edited January 2021

    the surgery & recovery are relatively easy (compared to the rest of breast cancer treatment) but I'd recommend doing the shots for at least a few months to make sure you can handle the instant menopause. I agree that it seems to age you faster (and it's not fun dealing with menopause problems younger than is natural) but I also was willing to be aggressive to get my best chance at preventing or delaying a reoccurrence. Good luck with your decision!

  • badger
    badger Member Posts: 34,614
    edited January 2021

    Hi Sharon, I had ovaries & fallopian tubes out in 2012. It was laparoscopic surgery under general anesthesia. Easy surgery, just a few small incisions in my abdomen. I went home the same day it was done. Doc said it might take two weeks to recover but it was quicker than that. I took off work the day after surgery but was back the day after that. I did refrain from lifting more than 10 pounds for two weeks per discharge instructions.

    I was 50 at dx and in peri-menopause so was already coping with the onset of hot flashes and night sweats. They got more intense after chemo (six rounds of taxotere & cytoxen). The ooph did not increase the effect. I coped with the hot flashes by layering my clothes and deploying a folding hand fan. For the night sweats, I kept a pile of clean t-shirts by my side of the bed and would whip off the wet one and pull on a dry one. DH got used to sleeping in a very cold bedroom LOL.

    That was many years ago so I'm over the worst of it but still carry a folding hand fan and dress in layers because it's WI and the smart thing to do. :-)

    You've gotten some good advice already. One thing I'll add is to make sure to get some exercise. It will help your mood as well as your bod. Best wishes!

  • nye1980
    nye1980 Member Posts: 69
    edited February 2021

    I have been on Zoladex since 2016 and will likely have my ovaries out this year to save on the cost of Zoladex and for the convenience as right now I need to go to hospital every three months for the shot. So I've been in menopause since chemo. I'm wondering if anyone who has done both can tell me if the side effects of menopause were worse going from ovarian suppression or removal? I feel like I've finally settled into my skin (thinning hair and hot flashes and all) and am nervous about being surprised by even more side effects. My bones have held up well almost five years on.

  • LeesaD
    LeesaD Member Posts: 383
    edited February 2021
    nye1980- I did not have worsening of menopause symptoms after my ooph. Chemo started the process and then Zoladex continued it so by the time I had the ovaries removed my body was adjusted.
  • Jelson
    Jelson Member Posts: 1,535
    edited February 2021

    I recently read that a significant number of ovarian cancers actually start in the fallopian tubes. Do oophorectomies usually include removal of the fallopian tubes? because if they don't, consideration should be given to asking your medical oncologist about this.

  • GoldensRBest
    GoldensRBest Member Posts: 447
    edited February 2021

    I had my ovaries and tubes removed at age 36 (I’m 65). I continued to have periods during chemo so obviously my hormones were functioning too well. I had very high estrogen/progesterone levels so MO advised to remove ovaries and tubes. Surgery was unremarkable but all those years without hormones aged me. Having been dx with MBC 1.5 years ago, I have aged even more dramatically due to hormone suppressive drugs. I don’t think of 65 as old but I sure feel like I’m 80

  • 2019whatayear
    2019whatayear Member Posts: 767
    edited February 2021

    My experience is very similar to LeesaD. My periods stopped after chemo treatment #2 and then since I am BRCA2 so after finishing radiation I had my tubes and ovaries removed. menopause symptoms were not worse for me and honestly, I had terrible periods and PMS so surgery has been better. I also used to have frequent headaches and now I don't.

  • Fairchild
    Fairchild Member Posts: 206
    edited February 2021

    Sharon,

    Here's my answers, from my experience:

    - How long ago did you have the procedure?

    December, 2019

    - What was it like?

    A quick in and out. I just had ovaries and Fallopean tubes removed. An ovary had a suspicious cyst, so they needed to be biopsied, and the only way to do that is to remove them. My 25 y/o daughter came home to help me, but honestly, I probably could have been on my own. The surgeon thought immediately that they probably weren't malignant (he was right), and I went home later that day. They gave me something to knock me out for the surgery and I woke up not even really sore. I laid around a few days but then pretty much was back to puttering around the house, wrapping Christmas gifts.

    - How was it different than what you were expecting?

    It was less uncomfortable than I thought it would be. I don't think I took more than 1 of the pain pills they gave me.

    - What side effects did you get from being suddenly put into menopause?

    I was already post-menopausal (age 64) and on hormone blockers anyway. I have gained some weight since the surgery, but that might be just coping with the shutdown. I have had some flashes again, but they don't last long. I'm just careful to dress in layers in case I get hot.

    - What side effects are you still experiencing? Has anything helped or not helped?

    I tend to get hot at night, so even in the winter I sleep with just a sheet over me. But I also have 2 cats on top of me at night!

    - What's your advice for someone about to go through it?

    As stupid as this sounds, I would think positively to the extent that you can. After all, women have gone into menopause since the dawn of time. I tell myself if other people can cope, I sure can, too! It was a big help to find out I didn't have ovarian cancer, too.

    I hope this helps!

  • renbird
    renbird Member Posts: 110
    edited March 2021

    Hi Fairchild... wow! : )

    Thank you for your responses to all of my questions... they were extremely informative and helpful.

    Best best best... and thanks again.

    -Renbird


  • renbird
    renbird Member Posts: 110
    edited March 2021

    Hello BCat40:

    Thanks for your thoughtful question...

    I have been presented with 3 options: Tamoxifen, Lupron+AI, or an oopherectomy.

    I imagine I would go with the Lupron + AI first (if I don't start with Tam first) and (like the vast majority of women treated by my onc, according to her) get the ooph surgery once I see how I handle the AI + Lupron.

    Ahhh...decisions, decisions... but I am grateful to have choices in this matter at all.

    -Renbird

  • renbird
    renbird Member Posts: 110
    edited March 2021

    Thanks to everyone for weighing in... if you have anything else to add, please do! : ) XO -Renbird

    Here's to spring!

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