Removing my ovaries/tubes. Take the uterus too?

Mommato3

I just came home from an appointment with my gynecologist about having my ovaries and tubes removed. I recently came out of Chemopause and am going to started OS next week. I was planning to leave my uterus because I thought it served a purpose. She said no. It's just a cancer catcher now. She said a lot of the issues women have after surgery would have happened even if they didnt have their uterus removed. I'm torn. I would really prefer a four week recovery over a six week one. But who wants to worry about another cancer!?! Any advice would be greatly appreciated.

inks

I only had a 2 day recovery with laparoscopic oophorectomy. I got to keep my uterus and my surgery was done by Yale trained gynecological oncologist. There was a study for women with BRCA about whether to remove the uterus or keep it and the results were that removing the uterus just raises the risk of complications. Why mess with it if it's not broken? Can you consult another gynecologic oncologist?

kytylove

I am trying to figure this out for myself right now as well, I came out of chemopause and I am taking tamoxifen currently, which has been fine, I am just tired of it being on my mind.  inks, how have you been doing with the ovaries being removed?

inks

I also started AI so I am not really sure if my symptoms are from that or oophorectomy. Hot flashes are worse, hair is thinning and I am pretty sure I am dealing with depression. But I'm still glad I did it in the light of SOFT and TEXT trial results.

kamm

I also had a prophylactic ooph and my first reaction was for them to take my uterus as well. Why not? Didn't need it anymore at fifty and had the same thought that it's just another cancer catcher. However there are potential problems that can be assoc with it such as urinary incontinance, infection, bleeding etc. although the risk is low it's wasn't low enough for me. The surgeon also pointed out that even with my family history of cancer, which is pretty heavy, the chance of a uterine cancer is very low so I had him leave it. If your taking Tamox for a long time that may be something to take into consideration as well.

inks

Kamm - I totally agree, it is just common sense. Plus most uterine cancers requier only surgery - no further treatment.

coraleliz

A urologist told me that the risk of cystocele(bladder dropping & causing incontinence) following a hystectomy was "low" "around 10%". She recommended against it. But she said there is surgery available to fix it.

inks

I can understand taking the 10% risk if you have a medical reason for hysterectomy. But if the surgery is prophylactic/elective you should consider the risk of SEs. My MIL had the surgery to "tie up her bladder" and it did not work for her for very long, I guess maybe that is the reason I did not want to disturb my insides more than I had to.

kamm

I agree inks. The 10% is reasonable and low if you have a need to have it out but I would kick myself if I ended up needing a bladder sling because of prophylatic removal. I have a friend as well that did end up that way and it was not appealing!

Mommato3

It's interesting how doctors have so many different opinions on the same subject. I have a friend that had everything removed and she was out shopping two days later. But even hearing that still makes me nervous about removing my uterus. My gyn really didn't act like it was a big deal. That's what was so confusing. It's ultimately my decision though. I think I'm going to wait until September since the recovery time is four weeks. I want to Enjoy the summer with my kids. Last year I was going through chemo so it wasn't much fun. I appreciate everyones input

peggy_j

Mommato3, is your surgeon planning to do the procedure laparoscopically? I had one ovary and both tubes removed last year. I don't remember being out of commission anywhere close to four weeks. (I think the second week I still walked a bit slower than usual but that was it. And I took a break from swimming for awhile; but not that long). If you choose to have the hysterectomy, the 6 weeks recovery time is usually what they say for an open incision. If they do the hysterectomy laparoscopically (and/or through the vagina) the recovery time should be less. Maybe the 4 and 6 weeks periods are the worst case scenarios or ? (or that's what they tell you, and then if you recover more quickly you're pleasantly surprised). If one goal is to enjoy the summer, I bet you could have the surgery now and be all healed and done with this issue before the summer even begins.

FWIW, my mother was recently Dx'd w/ stage 3 ovarian cancer, so I am considering having surgery to remove my last ovary and have a hysterectomy. I met w/ a gyno/onco and he said that's what he'd recommend. Being on tamox, I'm at higher risk for uterine cancer. Plus other annoyances like polyps, which could mean further testing etc. I went through 9 months of having an ovarian cyst monitored before having surgery and it's kind of nerve-wracking (is it cancer or not or ?) I also know someone whose mother was Dx'd with cervical cancer in her 60s and she's had a recurrence. (I think it's now stage 4). So...I'm leaning towards removing optional body parts, if it can prevent another tour of cancerland.

GrammyR

I just want to add my 2 cents as I have return of ER pos BC after 7 years. I had radical mastctomy and chemo at age 58. It came back at age 65. I had been in menopause for many years. I wish I had the ovaries removed. It was not presented as an option and thought not necessary. As a retired nurse though I would hold off on the hysterectomy too. That can be very big surgery compared to the ovary/tubes removal. The adrenal glands still produce hormone I am told so no sure way . Not an easy decision for a young woman . Big hugs to all.

Meow13

GrammyR, I was post menopausal at time of dx 53 years old, I was 44 when my periods stopped. I was not told having ovaries removed could benefit me.

Mommato3

Peggy, yes, she said it will be done laparoscopically. The uterus would be removed either through the vagina or one of the small incisions. She said the recovery period was six weeks (to remove everything) but that could be worse case scenario. My mom was diagnosed with ovarian cancer at 18 so getting my ovaries removed would give me peace of mind. I'm currently on tamoxifen but will be switching to an AI. I still need to have my exchange surgery. I'll need to schedule this for fall unless they would do them at the same time

peggy_j

coraleliz, I wonder if that rate of complications is current. I found this article on PubMed and in the abstract they state the rate of any genitourinary complications is about 1-2%.

http://www.ncbi.nlm.nih.gov/pubmed/23635631

I wonder if your urologist is quoting data from years past or ? (or...if you or anyone else has a source with data, I'd love to see it. Thanks)

Mommato3, good luck with your surgeries and your decision. It's not easy. I know there are many considerations, but I don't think the 4 vs. 6 weeks recovery time is typical for these laparoscopic surgeries. My understanding is that these procedures can be common ones for many gynos. (i.e. their "bread and butter.") So for them, it may not seem like a big deal because they do them all the time. I guess that's good news. I like having a surgeon who knows what she's doing. (removing ovaries and tubes is easy; a hysterectomy is more involved but still a common procedure). Realistically, I think most patients will have the biggest change from removing both ovaries. But...ovarian cancer is scary and hard to detect early. Sorry to hear your mom went through that. And again, good luck with your decision and your upcoming surgery.

SuC

I had laparoscopic hysterectomy and bilateral oopherectomies 7 weeks ago. I went back to work 3 weeks ago but honestly think I could have gone back 2 weeks before that. I feel 100% - as if I had never had surgery

coraleliz

peggy- I've tossed around what to do in my situation. My GYN(who's a reproductive endocrinologist) gave me the option of getting everything out. He seems to think my worst problem is growing polyps. The ovary cysts I've had before BC, so those don't worry me. I've always resolved them. If I keep my uterus, I will keep growing polyps.

I see a urologist because pre BC I had a urethral diverticula. When I started on Tamoxifen I started having incontinence. She feels this will get better when come off of the drug(i'm only giving it 5years). I asked her about removing the uterus & she said "I wouldn't" & gave me the 10% figure which she called "low". I didn't ask for her to direct me to studies because I was leaning away from having a hysterectomy anyway.

Now, my MO likes the hysterectomy idea.

My BS, says she wouldn't do it. She called it a major surgery. I had a BMX, I'd really don't want to go thru a another surgery with a long recovery(4 weeks seems long to me).

My PCP says the uterus helps support the bladder & removing it can cause problems. She says she'd continue getting D&C/polypectomies, US monitoring etc. I've found with D&C/polypectomies, I'm better the next day. No real recovery. No swimming for 2 weeks, but it's not my 1st choice in fitness related activities.

I know many women without BC who have had there hyster/ooph & wished they had it done sooner.

My situation is different than others here. I thought I'd add to the discussion my urologist's comments. For now, I'm holding onto my uterus. There is someone here at BCO, who ended up getting a hysterectomy 3 months prior to her 5 year mark on Tamoxifen due to precancerous changes. I realize if that happens to me I'll regret my decision not to get it out sooner. I have only 1 1/2 years left on tamox.

badger

hi all, great discussion. I was 50 and in peri-meno at dx.  Hadn't had a period for months but I think one year is the deciding line. Went into chemopause but due to peri-meno status was put on tamox.  Onc recommended an ooph but I said no.  Risk was low and I was tired of surgery.

Had an emergency appendectomy a few years later and the CT scan of my belly happened to find a cyst on L ovary.  OK time for them to go.  Had appendix out that day and ovaries & tubes out a month later.  Both were laparoscopic with a 2-day recovery time. Just finished 5 years on tamox and switched to anastrozole since I'm officially in menopause.  It's only been a week but so far so good.  I have no plans for hyster. 

coraleliz, groovy new avatar!  Is that Wilma Flintstone with a BMX? 

peggy_j

Unfortunately, I know a couple of BC patients who were Dx'd with endometrial cancer a couple years after completing their 5 years of tamox. (my guess is that it takes awhile for cancer to grow large enough to be detected). They are now both ~20 year survivors of BC, so they took tamox back when that was the only option (no AIs yet). I'm not a doc, but anecdotally, it seems that post-meno women have a higher risk of developing endometrial cancer than pre-meno women. I once read an article by an MO and his theory is that when you are still having your periods, you are sloughing off any hyperplasia, or pre-cancerous cells, each month. When I asked my MO her opinion of this theory (I was pre-meno at the time) she said it doesn't matter and that we were still going to be alert to any symptoms I may have. Also, and again this is ancedotal info, but my gyno (who has done multiple endometrial biopsies on me over the last few years) said she personally has never seen a case of endometrial cancer in a pre-meno patient, though she's seen it in post-meno patients. Not sure if this is helpful (since it's anecdotal info, not hard data) but FYI. Maybe another reason to take an AI after meno if you can (unfortunately, I cannot take one, due to bone health issues).

jeanelle

This is a very timely discussion for me. I just finished meeting with the MO who has recommended that I get my ovaries removed but not the uterus. I already had an appointment with my BS (who is a gyn/onc) in 2 weeks and she is going to let him know that she is recommending it so he can talk to me about it. She will then switch me from tamoxifen to an AI. I really just want to get back to normal (whatever that is).

vettegirl

I had my ovaries and tubes out Dec 5 laproscopically.  On Dec 29-I then had a reconstruction surgery that included Lat flap.  I believe the Gyno just told me to take it easy for about a week-like with lifting and such-defintely not a 4 week recovery since I had a second more major surgery so soon afterwards.  My Onc wanted my Ovaries out ASAP between surgeries-my aunt died of ovarian and I had been having a higher blood score the last couple times so we didnt want to play.  I too did not want the full hyst since it was a much major surgery.  5 surgeries was enough for me last year.  I feel like I did the right thing and am glad they are out-one less thing to worry about.  I also got to switch for tamox to aremidex after surgery, doing okay so far on that-its been about 3 months.

Jelson

diagnosed with endometrial cancer ( brown spotting then red spotting) with about 8 months shy of my 5 years on tamoxifen. had not had a transvanginal ultrasound in 18 months. was post menopausal when I started tamoxifen. when I researched endometrial cancer, I found that it is most commonly found in post-menopausal women and that tamoxifen related endometrial cancer also very much mostly in post menopausal women. Was told on my transvaginal ultrasounds that my ovaries were difficult to find, couldn't be found - that they atrophy. ugh - anyway I don't think they contribute much, if any, estrogen post menopause (unlike fat and adrenals). now, I am not sure about prophylactic hysterectomies - but mine included the cervix. I had laproscopic - robotic procedure, was in the hospital overnight, no restrictions on driving, restrictions on lifting weights (literally lifting weights), back to normal activity in one month and intercourse ok'ed in 6 weeks. worst part? injecting myself with lovenox anti-coagulant for 14days post op.

And yes, unlike invasive breast cancer which is infiltrating tissue/fat blood vessels/lymph system - endometrial cancer in the early stages is conveniently contained in a bag! which can be removed whole - however, it is staged by how many of the layers of the uterine wall it invades on its way out of the uterus. lucky for me - it was on the inner surface of the uterine wall and was considered stage 1a - if it were higher, it may have necessitated radiation and perhaps chemo. As it was, it was grade 2 and my gyno-onc insisted on taking lymph nodes outside of my uterus - another doctor in the practice said, after the fact, that he would not have taken lymph nodes. I had always chosen D&c when my gyno noted thickening of the uterus - ie 9-11mm. I don't know that the fact that my lining kept thickening after the d&c s while I was on tamoxifen was a warning that I was susceptible to tamoxifen - induced endometrial cancer. But i think my experience is relevant only to those starting tamoxifen while truly post-menopausal.

farmerlucy

Jelson - Thanks so much for that information. Sorry you had to face it but glad it was contained. I'm doing an ooph/ D& C in two weeks. I don't expect much recovery time, and I'm praying for no surprises. My gyn said the uterus would calm down post T and post ooph, so I hope that is correct.

debiann

I had my uterus removed years ago due to fibroids.  I kept my ovaries because I had not yet gone through menopause.  In hindsight, with a Er+ bc I wish they would have been removed too.

I just wanted to comment on the recovery time. My uterus was removed through abdominal surgery. I spent one night in the hospital.There was pain the first few days. I was teaching preschool at that time. I returned to work 8 days after surgery. Of couse I had to take it easy for awhile, but the surgery wasn't that bad.

My roommate in the hospital had her ovaries removed through her bellybutton and experienced complications and had a longer hospital stay.

1knightsjourney

I'm facing the decision of whether to remove my tubes for birth control reasons. I'm in chemopause, ER/PR + and need an ultrasound to see if my ovarian cyst is back (today I had a misplaced IUD removed because it was causing pain). I am waiting on a FSH test and pelvic ultrasound before I decide. Is there any reason to remove the ovaries in addition to the tubes? Is there any reason to keep the ovaries?

Mommato3

1knight, the SOFT trial that came out in December recommended that premenopausal women do ovarian suppression plus either Tamoxifen or an AI (with an AI being better). I would have to get a monthly (or every three month) shots for five years if I kept my ovaries so I stayed in menopause. I think it would be easier to just remove my ovaries. It's also possible that I would have to get the shots longer if I went back to being premenopausal after five years. I'm only 42 so it's possible. I see my MO Wednesday so I'm also going to get her opinion

peggy_j

Thanks everyone for sharing your information and experience. This is very helpful for me.

Jelson--I'm sorry to hear about your endo cancer but glad they caught it early and that you didn't need chemo or rads. Thanks a lot for all your information and for explaining how that went for you. This is helpful for me in my decision-making process.

debiann-thanks for sharing your experience too. Helpful.

1knight--you asked if there is any reason to remove the ovaries vs. just the tubes. Last year I removed 1 ovary and both tubes. I asked my gyno-onco, "Does this mean my risk of ovarian cancer will be reduced by 50%?" He said we don't know. (when a woman is still pre-meno, if she keeps one ovary is picks up the slack, so it may be working extra hard and now is at higher risk for cancer.) I've heard that removing the tubes or having them cut can reduce the risk. But overall I think it's hard for them to quantity the benefit of removing just part of the ovary-tube "system." Is there a benefit to keep them? I kept one ovary last year because I didn't want to deal with the surgical-instant menopause. If you're in chemo-pause right now, maybe you've already lived through the worst of it? I was concerned about bone health, though my endocrinologist has said repeatedly to focus on the cancer risk(s) when making these decisions.

I'm scared of ovarian cancer. My mom had vague gastric symptoms last fall, and had a bunch of tests, including a pelvic ultrasound, and everything looked fine. In late Jan symptoms quickly escalated and she was Dx'd with advanced ovarian cancer. So unfortunately there aren't any good screening tools for ovarian cancer. We BC survivors are at an increased risk, I believe 5x the rate. I'm at an even higher risk now, with my family history. I am BRCA- but I've learned there are other gene panel tests, so there maybe other genetic links beyond BRCA (maybe even ones we haven't identified yet). So...for me the decision to remove the last ovary is clear. But for others, I know decision making can be difficult. Hope this discussion is helpful for everyone.

1knightsjourney

Peggy, thank you for taking the time to share your experience and the advice from your doctor. At this point, my doctor hasn't even suggested removing my ovaries, but I don't see any reason to keep them, especially since I'm in chemopause.

Mammato3, I'm interested to hear what your MO has to say about it.

peggy_j

1knight, my situation was different than yours. My gyno found a semi-solid cyst on my ovary. She said it probably wasn't cancer but it didn't look like any of the 5-6 types of benign cysts either. So from day one we discussed surgery as an option (at first, I chose to do watching waiting w/ repeated pelvic ultrasounds, until it was clear that it wasn't going to resolve on its own.As it turns out, she was right--not cancer, and also not normal benign. There were two funky things going on, which made it hard to Dx from U/S). Anyway, you may want to ask your gyno and also ask a onco-gyno the pros and cons of removing the ovaries w/ the tubes. Both my docs admitted their own biases: my gyno is a woman in her mid-40s and admits that as she gets closer to meno, she appreciates why women want to delay it as long as possible. My gyno-onco said he couldn't address my bone health issues; he said he never sees patients who are 70 and otherwise healthy except for osteoporosis. He sees cancer patients all day long. When I saw him last year he said the patient before me was a woman who removed one ovary in her 40s, and then ended up with cancer on the other ovary 20 years later. So his opinion was clear: remove them both. (I was 49 and peri-meno) So I think the gyno and onco-gyno have diff. perspectives based on what they've seen. After hearing my mom's surgeon give us the post-op report, I have a much better understanding about why ovarian cancer is so bad and I have new respect for the opinions of the gyno-onco.

Mommato3

Thanks to everyone who has shared their experiences. It's a tough decision to make. I want to do what I can to prevent a recurrence without going too far. It's not like I can put them back if I change my mind or something goes wrong! I'll update tomorrow after I've spoke to my MO.

Mommato3

I just had my appointment with my MO. She agreed with my gyn about removing my uterus too. The uterus is just a cancer catcher at this point. The risk of serious complications is very low. My gyn has done thousands of these surgeries. It all sounds good but I'm still hesitant. I'll wait until September since I can't swim or have sex for six weeks