Help - anyone pursue prophylactic oophorectomy/hysterectomy?

Kimberly Lewis · 04-28-2006, 04:14 AM

Hi all - my Onc suggested an ooph. and it was something I was already considering. In my "quest" I have come upon a potential Gyn that asked "why are you bothering with more surgery at 49yrs of age? Don't you think this is uncalled for?" She made me wonder if I am being extreem. I am post meno that was brought on by the chemo but to be sure I am so I can start on AI's I wanted to go for the Ooph and hysterectomy. This also is one less thing to worry about I thought! Anyone have an opinion/experiece - regrets, encouragement?

kristen · 04-28-2006, 04:30 AM

Hi Kim,

Has your ob run your FSH levels to make sure your in men? They thought I was in men and oops! no I wasn't. I ended up having the ooph and hyst and haven't regreted it one minute. My circumstances were a little different then yours. I was having cysts on my ovaries every month and my FSH levels were rising, but they told me that they couldn't tell me when men would come, and my ob said technically your not in men until you have not had a period for one year. I hadn't had one for 16 months and then bam they hit and of course they stopped right before the surgery, but according to the u/s I still had cysts.

My personal opinion and that is all it is, is at your age your going to either be in it or are in it, but without more info it's hard to tell. I would have them run the FSH and if your low, then why wait. Why should you have to wait another year before you can go on AI's if you want to? It's your body and your decision. Others w/more knowledge in this area I am sure will chime in. That was mine and I would also if you can look into the LAVH. It was so much easier then the other one, where they give you the smiley face scar on your tummy. I had to remind myseld I had major surgery I felt so good. Best to you..

Kimberly Lewis · 04-28-2006, 04:45 AM

Thanks for quick response! My FSH was 102.0mIU/ml which according to my Onc at Duke put me clearly post meno. HOWEVER my Onc I see now scoffs at that result saying they are not able to be sure from this test. I have not found two Doc's that ever agree on anything, sigh........ My feeling is that I will be happier with fewer organs that can go cancerous on me! (but what would I be left with if I followed that thought all the way out!)

tricia keegan · 04-28-2006, 03:32 PM

Hi Kimberly I am 47 and in chemopause! I have decided to have my ovaries removed as a preventative measure as I am highly pos for hormones.My onc agreed and we also both agreed once this is done Arimidex would be better for me than Tamoxifen.I have read that even if you are menopausal there are still great benefits in having the ovaries out than not.Good luck it's not an easy decision but one I feel is right for me.
Tricia

Becky · 04-28-2006, 04:08 PM

I got an oophorectomy because my bloodwork said I was in menopause but I came out of it and got my period back. This was last summer and I was 46. What I didn't know is that it is crucial to get the estradiol levels done too and not just FSH and LH. The estradiol level should be 20 or less (and Arimidex or an AI can take that down to 1 or less). So, I got the ovaries (and tubes) yanked. No regrets - I could stay on Arimidex and Herceptin - one of the best combos.

If you don't get the ovaries removed, make sure you keep checking the FSH, LH and estradiol levels monthly. (I used to get second opinions from an onco at Sloan Kettering until I found the great onc I have now. The Sloan doc said things can change on a dime and she was right). My gyno said my uterus was fine and an oophorectomy was all I needed and the healing was quick (that's true).

Find another gyno especially since your onco suggested it too.

Kindest regards

Becky

jsattaw · 04-28-2006, 09:35 PM

Hi Kimberly --

I had a complete hysterectomy with oopherectomy last November (44 years old) as part of my treatment plan for a recurrence. I wanted to begin an AI and while the literature is not definitive as to the benefits, it seemed with HER2+, that an AI is more beneficial. You might speak with your doc about injections (e.g. Lupron).

I haven't had any problems and felt that being more aggressive in my treatment would give me more confidence and reduce my worrying.

Good luck with your decision.

Jill

Petesmom · 05-01-2006, 07:00 PM

Hi Kimberly,

I had an ooph last October. I was 52 at the time and menstruating like a teenager. I didn't want to take Tamoxifen as I had been on Toremifene for 5 years prior to my recurrence. Anyway, I insisted against my oncologist's advice. My OBGYN agreed with me. Anyway, had it done laproscopically and it wasn't bad at all. As it turned out, I had two huge cysts on both ovaries so I am glad they are gone. Now I am on Arimidex and glad of it. Insist upon what you want. It is your body and your health so go for it. Blessings to you.

Petesmom