Decision-making process: Oopherectomy versus hysterectomy

CJRT · August 2015

Looking for insights and help as I make the decision between just an ooph. or the additional hysterectomy. I am pre-menopausal and have a history of estrogen-positive breast cancer that has metastasized. I've been taking Zoladex to suppress my ovaries for over two years and scheduled a surgical consult. The possibility of also removing the uterus was mentioned, and the surgeon did not make it seem much more involved, both in terms of the surgery itself and long-term side effects. I do not have a history of gynecological problems, have negative genetic testing, and have no family history. I'm concerned with additional problems that may arise due to a hysterectomy (i.e. pelvic floor issues, incontinence, etc.). Would love to hear feedback from others that have either gone through these procedures or have discussed them with their providers. Thank you!

vlnrph · August 2015

Gynecological surgeons may not see many of the long term consequences of hysterectomy unless they are called upon to do repair operations. Removal of the uterus has been described as one of the most unnecessary procedures routinely performed so I would avoid it if possible. Historically, it was way overused in my opinion.

Salpingo-oopherectomy, on the other hand, might be a good option allowing elimination of the Zoladex and diminishing the chances of ovarian cancer which is so hard to catch early.

When was your genetic testing done? There are broad panels now available that look at more than BRCA 1/2. It might be worth a call to inquire about an update if the analysis was back around the time of your original diagnosis.

CAMommy · August 2015

I had a da Vinci hysterectomy and BSO (both ovaries removed) two years ago. The procedure was out patient and I had very little pain. Very easy recovery, about 2 weeks. I don't miss my ovaries at all. I was 44 at the time and premenopausal. I may not be the norm. But I feel better after removing my ovaries than before. I was on estrogen but now I am not and again, I feel better now than when I was on estrogen. Go figure.

inks · August 2015

You only "need" your ovaries removed, there is no issues with your uterus so just leave it alone. I chose only laprascopic oophorectomy even when my PCP said I should get my uterus out too for the "convenience" of not needing pap smears. While it may be tempting to forego any future pap smears the risks of complications from hystorectomy are just too high. I already tinkle when I sneeze and I am not ready to wear adult diapers. Hysterectomy is a way more involved surgery and does have many complications.

CJRT · August 2015

Thanks so much, vlnrph, for taking the time to respond and for your insights. I actually had additionally genetic testing a few months ago because my original testing was back in 2011, and I thought it might be valuable information to have for decision-making moving forward.

CJRT · August 2015

Thanks for your response, inks. You have echoed some of my thoughts/concerns. A line of reasoning to remove the organ because it isn't being "used anymore" and could theoretically get cancer was not entirely convincing to me. I think the risks of removing are minimized compared to anecdotal evidence I hear from women complaining down the road.

CJRT · August 2015

CAMommy- If you don't mind sharing, why did you opt to do both rather than just the ooph? Trying to understand why I might lean towards removing ovaries/fallopian tubes AND uterus versus just ovaries/fallopian tubes.

glennie19 · August 2015

I had a complete HX, but,,, I suffered for years with uterine fibroids, which my GYN suspected was causing my high estrogen levels. This was years before BC, but I kept suffering along cuz I really didn't want the surgery,,, wanted to go into natural menopause. The BC diagnosis changed that. Since I needed my ovaries out for the high estrogen,, and the fibroids were suspected of contributing to the high estrogen levels,,, I had everything removed. It was robotic and I have to say it was an easy surgery for me to recuperate from. So I had a reason for my uterus to be removed,,, but you don't really. Many on here only have ovaries removed,, so hoping you will hear from some of those women. Best of luck to you.

uds17 · August 2015

I just had a Da Vinci hysterectomy and BSO in April. The procedure itself was fine and pain was minimal. The only annoying part of my recovery was that it took 2 1/2 months to get medical clearance to return to full physical activity (+ an additional 2 weeks for sexual activity). The reason was that there was a delay in the healing of the roof of the vaginal wall (where the cervix was). Despite the annoyance of the delayed internal healing, I am totally glad I did the procedure. Tamoxifen can increase the risk of endometrial cancer and my oncologist wants me to continue taking it; I just figured for a few more weeks recovery I can have less stuff to worry about down the line.

BTW, I find my bladder control is better than before the surgery- probably because my uterus isn't pressing down on it. And maybe this is TMI (but we're all friends, right?!).... my husband prefers the feeling during sex because he's not bumping up against my cervix. It's better for me, too.

I hope all goes well for you whatever decision you make!

CJRT · August 2015

Thanks so much for sharing your decision-making process and experiences. I greatly appreciate it! It's really helpful to hear how others have made their decisions and how you feel about the choices you've made.

vlnrph · August 2015

Keep in mind that endometrial/uterine cancer is fairly easy to detect because it will often present with the symptom of abnormal bleeding. That diagnosis, which may never occur, would make surgery a given.

The "inconvenience" of Pap smears as a reason to remove healthy organs almost made me laugh out loud!

CAMommy · August 2015

hi,

I did both because I had fibroids and my uterus was the size of a 4 month pregnancy. I had the ovaries removed because I was having a hard time with perimenopause and because of my moms breast and colon cancers (she's fine by the way, no recurrences of either). My plan was to go on a low even dose of estrogen and feel sane again after insane perimenopause time. BC interrupted that, no more estrogen for me. But I actually feel better without it.

CJRT · August 2015

Thank you so much, CAMommy, for sharing your reasoning and experience. I am trying to ascertain how many made the hysterectomy decision solely because of BC versus other medical issues/concerns.

knittingPT · August 2015

HI. My medical oncologist and gynecological oncologist both recommended just the salpingo-oophorectomy for me They said that is where the estrogen is coming from (my cancer was estrogen and progesterone receptor positive, HEr2 (-) and I have no genetic predisposition for other cancers). They both said that the uterus serves a role to support some of the other abdominal organs and that bladder prolapse can be an issue if you remove it. They said since I didn't have genetic issues to leave the uterus. It is so hard to know who to listen to isn't it?!?

CJRT · August 2015

Thanks, knitting! My MO and a second opinion MO that I traveled out of state to meet had both recommended the slapingo-oopherectomy only to me, which is why I was somewhat surprised that the surgeon mentioned the hysterectomy. Though I certainly wasn't pushed in that direction, my mention of additional difficulties that could arise was rather dismissed. You are certainly right- it's so hard to navigate this process and know which recommendations to follow! Thanks for sharing... It truly helps me sort through things in making my decision.

Redheaded1 · August 2015

I had a total hysterectomy about 10 years prior to the breast cancer. I had uterine fibroids and my doctor said, lets just take everything. I argued and argued about keeping my ovaries, but the pain and heavy bleeding finally won. I had no complications, other than horrendously hitting menopause at 1000 mph from having my ovaries out.

So, with my hormone positive cancer, I thought I won by not having ovaries. But didn't understand that the adrenal glands convert aromatase to estrogen in the body, so I have to take an AI for 5 years. But if I had kept my ovaries, I am sure I'd be having them out now, just to be safe.

My hysterectomy was a wonderful thing, and I wish I had not prolonged it..

peggy_j · August 2015

I've had both surgeries separately so I can compare. IMO, a hysterectomy isn't a little procedure you "tack on" while in you're in there doing an ooph. It's more involved for the surgeon and has a longer healing time than the ooph. (in contrast, if you're getting a hysterectomy, removing ovaries is a simple procedure to add on. Of course, surgical menopause has more ongoing symptoms) Like any procedure there are risks. I happen to know several women who had hysterectomies 3-4 decades ago in their 30s and never had problems at all. They all had open incisions. Both of my pelvic surgeries were done laparoscopically, so my healing time was much less, but post-Hx I had to be careful about lifting things for 6-8 week. (with just the ooph, I was fine much sooner). That said, there can be reasons for having the hysterectomy. I took a while to decide and sought several opinions. I had several reasons why a hysterectomy could be good for me. (I don't want to bog down the board here with my story, so I'll PM you with the details). One surgeon said that sometimes there are several "soft" factors that can add up and make it the right decision for the patient.

The summary: my MO said that the risk of endometrial cancer wasn't super high, but she deferred to the gynos. The gynos thought that, for me, it was smart pro-active choice, and that fewer surgeries in that area was better. I chose a highly skilled (frankly, overqualified) surgeon and had a smooth recovery period. For me, I'm glad that not only have I eliminated the risk of cancer in those body parts, I don't need any more screening tests. What a relief!

p.s. if you want to learn about the experience of other women's hysterectomies, you can check out the Hyster Sisters website.

farmerlucy · August 2015

I had an Ooph about four months ago. Tamoxifen was causing benign polyps and continuous bleeding. The effect of the ovary and estrogen loss was more than I'd imagine it would be at 55. I bumped up my effexor and that helped w the hotflashes and the dark moods. I had a D&C at the same time as the ooph and that was completely benign. I opted for the ooph only because I was concerned about "things falling out" per my gyn (you gotta love her!) It took almost four mo for the uterus to calm down and stop bleeding and get the message that I'm now post meno. I wondered if I'd made the wrong choice but it's all good now. I chose not to do the hyster since the risk of uterine cancer is quite low and as mentioned above relatively easy to detect.

ShetlandPony · August 2015

Yeah, I know someone who had a hysterectomy for fibroids and now has a prolapsed bladder. I read that low vitamin D can be related to uterine fibroids. Mine shrank when I took lots of D3 to correct my vitamin D deficiency, and then shrank more with chemo-induced menopause and the AI. So I'm glad I didn't opt for a hysterectomy because of fibroids.

CJRT · August 2015

Thank you so much for the information, ladies! I greatly appreciate you sharing your personal experiences and knowledge as I tried to make the most informed decision possible I can. Best of luck to all of you

chocomousse · September 2015

Regarding the D3, I took very high doses for uterine fibroids back in 2013 which unfortunately, didn't shrink my fibroids at all. I was so excited to have the end of the year ultrasound because I was confident that the D3, based on everything I had read, would shrink them only to find out that they were basically the same size.

614 · September 2015

I had the oophorectomy surgery only. I needed be medically induced into menopause so that I could take Arimidex/Anastrazole because I was not able to take Tamoxifen. I didn't want to continue the ovary suppression with Zoladex because I did not want to take extra medicine and the shots really freaked me out. I was not even close to being in menopause when I was diagnosed with bc.

My doctor never recommended the hysterectomy to me. I did not pursue the matter because, at the time last year, my insurance company was not covering my bc surgery. They felt that the surgery to my right breast was cosmetic! They were going to pay for my left breast surgery but not for my right breast. The fact that I would have been disfigured, and that it is a federal law, did not enter into the equation for them. Therefore, I did not want to tempt fate and ask for a hysterectomy, and potentially become homeless from huge medical bills and lack of money. I was battling breast cancer and my insurance company at the same time, while working full time, and it was really stressful.

In the end, my insurance company paid for my bc surgery after a HUGE fight and aggravation. I am glad that I did not pursue the hysterectomy because I have heard that people may suffer from incontinence from the surgery. I am happy with my oophorectomy choice.

I am absolutely sure that I would have wanted both a hysterectomy and an oophorectomy if my insurance company had not been so problematic. However, I believe that things happen for a reason and I am glad that I only had the oophorectomy and not the hysterectomy too.

Good luck.

coraleliz · September 2015

I consulted an urologist regarding the pelvic floor issues. She told me the incidence was " low, about 10%". But she did not recommend a hysterectomy in my case. I had been on Tamoxifen for about 3years at that point. I was having bleeding & polyp troubles. This meant outpatient d&c/polypectomy surgery each time. She called the d&c/polypectomy to be a "benign surgery" compared to the hysterectomy/ooph option. After the outpatient procedure, I'm fine the next day. I go to work, workout afterwards, make dinner.......

Both my MO & GYN think the hysterectomy/ooph are a good idea(both male by the way)

My urologist, BS & PCP think I should continue to get D&Cs. (all 3 female)

I only have 1 year to go on the 5year Tamoxifen plan. At that point, they might want me to go on an AI. So then I can grapple with osteoporosis & all the other associated problems with those drugs.

farmerlucy · September 2015

I was told the 10% number for incontinence issues too but that if it happened it could be surgically repaired. I did just the ooph. It took me four months of light bleeding post Ooph and D&C to get over the spell of tamoxifen. All good now.

CJRT · September 2015

thank you so much, ladies! I cannot tell you enough how invaluable your feedback is, both in helping me make my decision and make peace with it.

new2bc · January 2016

I had both operations 6 weeks ago. I hope the side effects will not be too bad.

exercise_guru · January 2016

I had a family history of gynecological cancers, a bad GENE and double breast cancer. I also do not have a super low BMI so I made the decision to have both a hysterectomy/BSO.

In my dream my hope is that eventually if they do a study that allows estrogen only that not having my uterus will provide the opportunity to have HRT. Also if Arimidex is horrible I can move over to Tamoxifen without worrying about uterine issues.

Here is the only paper with sources I have ever found on this matter. It is from an MO gyno ( I don't know them personally just found the paper useful). the case for removing the uterus is not a strong one.

uterus pdf

Decision-making process: Oopherectomy versus hysterectomy

Comments

Categories