Ovaries IN or Ovaries OUT??? Help please...

Peacetoallcuzweneedit

Ladies not sure where to really post this question. I have a hysterectomy scheduled for CIN3/CIS that was diagnosed the same week as my breast cancer. I have had double mx and also going through reconstruction. I had genetic testing done and was negative for BRCA 1 and 2. I had bilateral breast cancer, which is typically genetically linked. My oncs have said most likely some genetic mutation in my family, but it has not been discovered yet. Oncs also said with the size of my cancer I would not get a benefit for ovary removal despite my IDC being 100% ER + and PR+. (damn hormones) I have had MANY (seriously) medical opinions about removing ovaries during hyster. What will come out is the cervix, tubes, uterus...I am 47yo - 48 in Jan very perimenopausal...but not in menopause yet...ALL opinions continue to be a 50/50 split....unbelievable. It is up to me......ugh I hate it!

Ladies anyone taken out ovaries and what is/are your experiences? Age that is was done...and do you regret it? Help please.....god I thought this decision would be easier....it just isn't.

Icietla

I was postmenopausal by about fifteen years at the time of my breast cancer diagnosis. I had (open) TAH-BSO surgery a few months after. It was a long recovery with strict lifting limits. No, no regrets.

Icietla

I am so sorry about your dysplasia, but I am glad you are having it put to an end. I had that condition over and over and over and over, over about fifteen years. I wanted the fix the first time.

123JustMe

Hi Peace,

I had a laparoscopic hysterectomy salpingo-oopherectomy about a year after my surgery. I was glad I had it done! I was in the hospital at 0800, surgery at 10:30 and home at 4:00. Driving one week later. My mom died of ovarian cancer and I too wanted them out! (Negative genetic testing).

For me it was an easy recovery

Best of luck with your decision!

Racy

If you are post menopausal or have ovaries surgically removed or medically suppressed, you can have adjuvent treatment with an aromatose inhibitor, whereas if pre-menopausal the adjuvent treatment would be Tamoxifen.

What has your oncologist said about the pros and cons of these two treatment options? Those considerations could influence the decision about your ovaries.

Menopause has advantages and disadvantages in terms of overall health status. It is likely you will reach natural menopause in the foreseeable future.

The only other potential benefit I am aware of from having your ovaries removed is to prevent ovarian cancer, but I don't think that is recommended unless you are at high risk.

Your situation is tricky given you are having other reproductive organs removed. Ultimately, your oncologist and gynaecologist should be able to give advice that you are comfortable with.

farmerlucy

I had an ooph at 55 to put me into menopause and move from Tamoxifen to an AI. Even at 55 the estrogen deprivation caused tsunami hot flashes which continue to this day. I was unable to tolerate the AI and went back to Tamoxifen. It played tricks on my uterus and I had a total hysterectomy this year. In my opinion I should have had the hyster years ago. Mine was open, not laparoscopic but still the recovery was not a big deal. I’d have to think long and hard about the ooph if I were to do it all over again. The surgery itself was easy. But I sure do miss my estrogen.

labelle

I was also perimenopausal at 51 when I was diagnosed.

I discussed having my ovaries removed, but the only benefit for doing so seemed to be that it would allow me to take and AI rather than Tamoxifen and my OC said she preferred Tamoxifen for me anyway. Given that I have osteopenia already, both my OC and gyno felt removing my ovaries might do more harm than good. Neither seemed to think simply removing my ovaries and thus cutting off my already dwindling middle-aged estrogen supply would help me in any meaningful way to prevent a BC recurrence. So I kept them, but since tamoxifen has caused me to develop a painful ovarian cyst, I'm not sure it was a great idea. LOL. Damned if you do, damned if you don't, seems to be the way of it when it comes to the decisions we have to make.

As Racy wrote, your OC and gyno SHOULD be able to give you the information you need to make a good decision for yourself based on your own situation. Since they seem to be split 50/50, I'd guess it really won't matter much. When our doctors give us strong recommendations for treatment options, we might do well to heed their advice, but when they are all wishy-washy or all over the place in their recommendations, there is probably no clear advantage to doing whatever.

The words of my surgeon helped me a lot when I was first diagnosed. He told me there are NO clearly wrong choices when it comes to BC treatment (other than refusing to have surgery, LOL). Nothing we as patients do or don't do, no choice we make, will either definitely damn us to a recurrence or guarantee we will never experience one.

This helped me put things into perspective when it came to my treatment choices and to quit driving myself crazy and agonizing other each and every one of them.

You play the odds, but lots of times treatment options (like removing or not removing my ovaries) while they are huge personal decisions to make are rather unlikely to change the outcome.

NineTwelve

If you were not already getting a hysterectomy, I would advocate for keeping your ovaries. But since you are already going into surgery, it makes a fair amount of sense to remove the ovaries at the same time. Your stage was early, but your tumor was grade 3, and it looks like both breasts were affected.

My oncologist referred me automatically to a surgeon to remove my ovaries. I decided not to go through with it because I had a bad feeling about the hospital where it was going to be done. Instead, I opted for ovarian suppression via a monthly shot. Very expensive for my insurance agency, but fully covered.

As far as loss of estrogen goes, my chief problems have been joint stiffness and sadly, vaginal atrophy. That, if it happened to you, could either be a big problem, or not much of a problem (some of us have been single for a long time and have grown used to it.)

Best of luck, whatever you decide. There will always be pros and cons.

LeesaD

I'm 49 yrss old and I'm having my ovaries removed on Nov 17. I was pre menopausal and got my last period on first day of chemo. I wanted to go on AI's with ovarian suppression and my MO agreed based on SOFT trial which gives AI's and suppression a slight edge over Tamoxifen. I've been getting Zoladex shots once a month for suppression until my surgery. The being thrown into menopause hasn't been so bad for me. Chemo started it and then the Zoladex has continued it but maybe because it's been over a period of time it's fine. My MO has been checking my estrogen levels throughout and my estrogen has been virtually undetectable so I don't think much will change once the ovaries are gone. Then no more shots. My MO also said when we were discussing going to AI's with suppression that removing the ovaries studies have shown to give another edge over just the shots so I'm taking every edge I can get. Definitely an individual choice.

Falconer

I too am also receiving monthly shots to suppress ovaries and an AI. My MO asked me last month if I was sick of doing that. Um, yes! However, the possibility of extending treatment past five years seems like a good one. I just turned 47 and wasn't menopausal (I have a 4 year old) so I'm going with this plan and then maybe switching to Tamoxifen, though I know some women who do the reverse. I wonder what'll happen to any stray bc cells if/ when my E returns- hopefully those cells are starved and neglected enough so that they stay gone. So, no Ooph for me at the moment!

Peacetoallcuzweneedit

Ladies - thank you! thank you! thank you! for your responses...my brain is churning and I am re-reading them again....

Julz42XX

My plan is chemo then dbl masectomy *my poor beautiful Chi'chies' (everything off) reconstruction then with in 6 month total ovaries and anything /everything attached are coming out!

I'm 41 & not taking any chances.

I am brca1 also. U have to do what's good for u!

God bless everyone, stay ++++

Mmmmmwahhhh

Imkopy2

Peace,

I just had a robotic, laparoscopic vaginal hysterectomy and salpingo oophorectomy on 9/27. My BC was ER+, my onc really left it up to me because she said she could medically shut down my ovaries. In January 2017 I had a Lupron shot and went every 3 months even though I hadn’t had a cycle since May 2016 when I started chemo. Even tho I was not BRCA 1 or 2 positive I did test positive for the CHEK2 mutation which out me at risk for BC not ovarian. After talking to my onc and ob/gyn I decided I wasn’t going to take any chances and had my uterus and ovaries removed. I’m about 5 weeks out and I feel great. Since I hadn’t had a cycle in over a year Andy by having the Lupron shots I already had the hot flash thing which since my surgery has actually decreased. I feel great and my recovery has been a breeze, I went back to work last week (my job isn’t physically demanding) and I listen to my body. My choice was really based on the fact that I wanted to reduce my chance of reccurance as much as I could. I figured it’s better to be proactive rather than reactive. The choice is a personal one for sure, but at 46 I’m happy I chose the path I did. Feel free to PM with any questions. Best wishes to you

Michelle