Women who have had OOPH/Hysterectomy talk to me!

lisey - have you considered doing ovarian suppression so you can make the switch to an aromatase inhibitor rather than doing a hyst/ooph? Trying out ovarian suppression and finding outwhether you can tolerate aromatase inhibitor drugs would be an important determination to make before having an irreversible surgery. If you do well on an AI you could also just do the ooph and then you would be post-menopausal while leaving the uterus in place, so the risk of prolapse or other structural issues is negated. I had a total abdominal hyst/ooph at 45, 9 years prior to my BC diagnosis, for symptomatic uterine fibroids too numerous to count, so had no alternative but this surgery. The only issue I suffered with was wicked hot flashes - which continue unabated even though I am now 17 years out from the hyst/ooph. I did not gain weight, have any mood swings, or any problems with anything else you asked about.

I did the ooph first then could not tolerate AI so I went back to Tamoxifen. Two years later I had post meno bleeding and asked for the hysterectomy. Personally I would not do the ooph again - I was 55, but premenopausal. I had Tsunami hot flashes that have improved very little in four years. No sex drive at.all. Both surgeries were relatively easy. I was back to life after the ooph in a couple days. About a week with the hysterectomy with lifting restrictions. I should have done the hysterectomy years ago instead of putting up with heavy bleeding, long periods, fibroids. I am glad ovarian, uterine, and cervical cancer are off the table now, though I knew the risk for any of those was small.

I ,too, would suggest you try ovarian suppression firstbefore you decide on the permanent ooph.

Lisey,

I was 49. I am at the other spectrum of CBK's experience. I squeezed mine in between my mastectomy and the beginning of chemo ( really - 13/08 mastectomy/AXC, 2 weeks later Lap assisted vaginal hysterectomy and bilateral salpingo-ophorectomy, 12/09 chemo started) and had no problems. Yes I did get about 6 months of hot flushes but I think ACT chemo would have put me into ? temporary menopause. I am on Arimidex - I get joint pain and to be honest I look older - I can notice the lack of oestrogen, appearance wise. No problems with sex or orgasms - off it all while on chemo, but back to my usual self as radiation wrapped up.

Having said that I am of average weight and height and I heal well. I had a gynae oncology surgeon - in Australia they are about 40 of them and I think sharper with tissues - gynae onc training is different from normal gynaecological.

You can see from the responses there are a wide range of responses to this surgery. I think you need to work out in your mind exactly why do YOU want the surgery - be clear on your reasons for it.

Good luck whatever you decide,

😊🌷🐣

Lisey

I don’t want you to think the procedure itself was anything difficult in terms of pain or recovery. It was a big nothing in that department. I didn’t take a thing but Tylenol for a few days. And I had a micro biopsy of my ovaries that proved to be negative. Whew!!

The actual procedure was simple and relatively painless for me!! In fact I was out shopping the second day after my surgery by myself!

PS I just re-read that you don't like needles. The OS injections are not bad, in my opinion. They ice the area first, and I just feel a little pinch, and it's over in a second. I've never had any discomfort from it afterwards. It's easier than a blood draw, because they don't even need to find a vein.

To conserve energy and time, and because you really seem to want any and all thoughts on this stuff, Lisey, I recycle here.

The first two parts following were parts of responses to an ILC patient on Letrozole who asked about my TAH-BSO decision. Please understand those parts only in that particular context.

The last linked post following is not limited to the topic of hair. It also relates to my present cancer.

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I was diagnosed with ILC earlier this year at age 54. My menopause was at age 40.

My maternal grandmother died of breast cancer at age 50. I recall that my birth mother had troublesome fibroid tumors of the uterus. I was abandoned at age 12, and there is no further information about that family health history stuff available to me.

As for breast cancer increased risk factors -- other than BRCA, etc., genetic testing stuff, for which I was not tested -- I had about all of them, except for my being a non-drinker.

I had had surgical procedures for cervical dysplasia in my late 20s and again in my late 30s. Because of one of those surgeries, my cervix opening was extremely stenotic, very difficult to get specimens from for Pap tests. Not all gynecology clinics have proper gear for such a stenotic opening. It would be very difficult to know what was going on within my uterus. To give you some idea, two Pap tests ago, my uterus was gripped in something like pliers for an effort to force an ordinary (way too large) Pap test brush into my cervix. The thought is still sickening to me. It would have been very hard to detect other than late-stage cancer in my uterus, I am sure. There was that, and there was my cervix's known tendency to try to go cancerous on me, repeatedly. And I had over the (postmenopausal) years had a peculiar recurrent type dream of having blackish bloody discharge (and of course even in the dream world I knew it was indication of cancer). I had one more of those dreams after my ILC diagnosis, and I then took it as warning -- possibly that I had cancer hiding down there already, or possibly that I needed to head off its arrival/spread to there.

ILC is sneaky. It can hide from most any type of medical imaging.

Seems just about every cancer treatment (other than surgery) somehow increases risks of other cancers. One treatment can be too troublesome or might fail, necessitating a switch to some other treatment/medicine, with its own other risks. One medicine might bring increased risk of uterine cancer, while because of (possibly permanent) side effects from another, one might no longer be a candidate for elective surgeries. Age -- another big factor in surgery considerations -- is always advancing. The rest was uncertainty about those realistic possibilities -- possible changes in medicine/s needed and in my own health circumstances.

Finally, I had no use for a uterus, besides no use for Fallopian tubes nor ovaries. Except for people having babies, I never heard of any good coming from having those parts -- only bad trouble. I was not feeling so very lucky. Getting all those parts out meant I could -- maybe -- I hoped -- have a few fewer serious health conditions to worry about.

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[...]

Mine was also substantially larger than it appeared on Mammogram and Ultrasound imaging.

Two other things __ 1. I had read from some apparently reliable source here at BCO that even a decade after their natural menopause, the ovaries of perhaps five percent of postmenopausal women might still be producing estrogen. That (unknown circumstance) would defeat the function and purpose of Letrozole. __ 2. *If* one can do the whole recommended course of Letrozole (being postmenopausal and able to tolerate any side effects), that is probably better (more favorable statistics) than other endocrine treatment.

My TAH-BSO surgery was the old-fashioned open type. I am fearless about (most) surgery, but I am very afraid of anything in the nature of laparoscopic surgery.

[...]

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https://community.breastcancer.org/forum/109/topics/859538?page=1#post_5072695

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https://community.breastcancer.org/forum/68/topics/855099?page=1#post_4966261

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https://community.breastcancer.org/forum/78/topics/859567?page=6#post_5282068

Based on my experience - though it may be different for others - I am doubtful that Lisey would be able to reliably evaluate the side effects of OS in only a few months.

The side effects and fallout from OS are still evolving for me. Hot flashes came sometime after my second injection, and my joint pain didn't start until after my third injection. I'm set to have my fourth injection very soon, so we'll see how that goes.

Anyway, that's just my experience, but I felt I should share that.

Star, no one can really tell you how life changing your planned surgery will be, just as no one would be able to tell you what your experience with perimenopause/menopause would be. We all react in our own individual ways. Personally, I had a fairly easy time going into menopause but I have friends who were miserable!

I see you are taking Tamoxifen-- your reaction to it may be the best indicator of how your body will respond to surgical menopause.

Is your gyn surgeon aware of the potential uterine cancer SE of Tamoxifen? I am curious as to why, when both your MO and OBGYN have suggested a total hysterectomy, your surgeon does not think it is necessary.

There are treatment options to help with atrophy and dryness from ooph. Once the ovaries and tubes are gone the uterus is no big deal to remove. You said you already have some prolapse so I’d let them take it too. It’s not doing anything for you at that point. With it gone, risk of uterine cancer goes way down and discharge is a thing of the past. One of the best decisions I’ve made. Simply having been in tamoxifen is grounds enough to have insurance cover its removal. Once you have the ooph done you’ll be be on an AI which will take the adrenal gland-fat estrogen conversion issue off the table as it blocks the ability for that to happen.

Lisey-yes it can make prolapse of bladder or rectum worse. They can also take measures to reinforce those areas when they’re in there. (I saw that in the transcription notes of my surgery.) I assumed you had uterine prolapse. If you have rectum or bladder prolapse perhaps they can correct it at the same time of the surgery. Making sure you interview/consult various GYNs who do the surgery is also important. Don’t just blindly go with the GYN you currently see assuming they do a good job. Just having been on tamoxifen and especially if you’ve experienced thickened uterine lining and/or fibroids developed/grew while on tamoxifen, your uterine cancer risk goes up. Slightly, but still up. The media makes a big deal about women testing positive for BRCA and the risk of developing BC. We the general public assume that the vast majority of women diagnosed with BC have a BRCA mutation. The reality is that BRCA + ladies account for about 30% of BC diagnoses. The vast majority of BC diagnoses have little to no family history and have no BRCA mutation or other mutation that we know can increase BC risk. In fact if we find a way to correct the BRCA mutations, it would only affect 30 out of 100 women with BC. It would be a godsend for those 30 but would have no impact on the majority. Without the BRCA +, you fall in that majority.

I don't know if my Gyn did anything special, but any issue I had with minor incontinence dramatically improved after the hx. The uterus was quite enlarged so I figure maybe I have more space there now. I was worried about the opposite happening, so that was a relief.

Bcky, Totally understandable that you are READY! You've dealt with a lot in the last four years (to say nothing about your gyn issues before that). Best wishes and hugs to you as you deal with yet another surgery-- the worst part for me was that the bowel prep aggravated a hemorrhoid, but that is being taken care of next week. Oh, the second hardest part was the " don't lift anything more than ten pounds" restriction-- my two 15 lbs each dogs just did not understand!😊

Bcky, the *intestinal thing" was a routine clean out of the intestine prior to abdominal surgery. In my experience, the details can vary from surgeon but generally include some dietary changes, maybe a required amount of liquids, and the use of laxatives. For my ooph/hx, I was not admitted to the hospital but kept overnight for "observation"--ironically enough on the post-partum unit! Didn't bother me to be there but wondered how someone who reluctantly had the same surgery would have reacted ( Actually, I don't believe my female gyn surgeon who was a nurse before medical school would have allowed that under those circumstances).

Please do have someone to be with you when you come home. You should be able to be up and about but rest is truly a key to good healing. Take care!