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Do ovaries really have to go?

kef
Posts: 3
Joined: Nov 2011

I'm having robotic davinci Tuesday at Sloan-Kettering. My diagnosis is complex atypia with hyperplasia bordering on well-differentiated adenocarcinoma.

I'm a figurative sculptor and it's been difficult for me to accept my cervix which I'm rather fond of will be gone but I finally can face it. Now I'm working on losing my ovaries. Do they really have to go?

I'm 56, feel, act and look quite young. I never married though have had a fairly decent love life here and there, alas no family and related goodness.

The next few paragraphs are my personal and medical history. I get back to the questions at the end.
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Over the years I've had three surgeries for fibroids, only one which I requested due to heavy bleeding, in 2006. The others were done by doctors who said, "you need this," (I had no complaints before that) and I didn't question. Hysteroscopic D&C 1991, laparoscopy 1999 and finally abdominal myomectomy in 2006. I feel something of a victim of over-intervention. I could have done without the two unprompted surgeries.

The 2006 myomectomy turned up a single polyp with well-differentiated adenocarcinoma. It took several weeks for the pathology and I was in no frame to undergo another surgery, especially without a D&C to see if there was anything else. I found another doctor. He put me on Medroxyprogesterone after a D&C showed hyperplasia with simple atypia. I stayed on that and it cleared up. Then it came back complex atypia. J, the "love of my life," who I'd been seeing again since 2006, the one who I "let get away" back in 1989, had just killed himself April 2009. I had started seeing someone else just before that (it wasn't working with J for the third time) and everything was unbalanced in my life. My 87 year old father was very ill and we're a close-knit family. Surgery at that time would have thrown me out completely--tipped me back into a familiar but distant dark, hard-to-reach psychological state--so I begged and was put back on Megace. When the atypia didn't resolve again, the oncologist said I needed an hysterectomy. That was November 2009.

Waiting for an appointment with the surgeon, I stayed on the Megace and the next biopsy showed no atypia so I had a D&C which was also clear. The Megace had finally worked. Then I was put back on it just "to be sure." I'm not sure if that final course threw things off but it was very unpleasant for me. I still had a cycle but also sweats, weight gain, weird discharge-bleeding, all ascribed as side effects of the progesterone. Also joint aches and eye troubles. My next D&C showed complex atypia was back, December 2010.

Meantime my father, needing dialysis, went into a nursing home. My mom and I and the rest of the family visited him regularly. It was a challenging time but also rewarding. There was a terrace we'd sit on and my dad would draw. So much came out in that last year. It was a loving time but very sad and stressful too. I needed to be there for my mother and didn't want to burden her with also taking care of me though she would have managed. Finances were also precarious and I had a lot of work that was essential to complete. I also broke up with that fellow I was seeing, an old childhood friend. He recently married a woman fifteen years younger and she's pregnant, due in February.

Though second cousins on one side have had breast cancer, my closer family does not have cancer. Maybe they do now though.... I wasn't particularly frightened of a few stray cells though reading this board has put fear in my mind. A doctor friend had described cancer cells as pirates. One or two stray pirates are okay, it's when they start grouping together that problems arise.

So it's been a long journey for me fighting this diagnosis. My father died August 1. I finished two years of delayed tax prep for me, my parents and a business. I'm seeing a wonderful man and though there are limitations he's been very supportive. I'm ready for the surgery. I have normal cycles, still, and no symptoms or pain, except on my descending colon where there's a patch from the myomectomy/prior adhesions--or maybe it's something else?
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Heart, kidney disease and diabetes do run in my family. My doctor explained they don't just yank the ovaries but there's a tradeoff--removing the structures provides more benefits than the longterm more amorphous benefits of keeping the ovaries. He says I can take estrogen afterwards. But maybe I'll be staged and then won't be able to? I don't understand how I can take estrogen but can't keep my ovaries. I'm trying to work through this today as I can still sign a paper tomorrow saying I understand the risks of keeping my ovaries. I signed the one saying to give them up.

After so many years of accepting risk I'm inclined to say "remove it all," now that it's finally being done. Is that really the best choice I have?

I realize this is a forum of women who've had massive intervention and insult to their bodies and support each other with hearts and minds--we are not just our physical selves--and I'm here complaining about step one. Somehow I feel if I take that step, there will be more steps. If I avoid it, I will be fine. Yet I'm ready to do something now as I'm finally convinced it's necessary. I'm just having trouble getting my head around it. Any kind of insight will be welcome. I'm scared of waking up and feeling completely empty. I know that's in my head and I won't be alone or abandoned but that's what it comes down to for me.

Thank you and blessings for health and well-being,
Kathy

Michaelynn
Posts: 71
Joined: Apr 2010

I personally would have them taken out for two reasons. Number one the possibility of ovarian cancer down the road and number two if you do need chemo and radiation (which does take a toll on the body) another surgery to remove the ovaries later would not be good.
You are 56 and would probably have started menopause fairly soon anyway and its better to know if your at risk for taking estrogen now then to find it out a few years down the road (if cancer does come back)after you'd been on it for a few years. But thats just my opinion
listen to what your mind and body are telling you and you will make the right decision.

kef
Posts: 3
Joined: Nov 2011

How will I find out whether I'm at risk for taking estrogen or not--is that something they can know before they remove ovaries, i.e. on the operating table, or otherwise, a blood test perhaps?

It may not make all that big a difference one way or another keeping ovaries at my age, as you say.
From PubMed (one source):
"In this large prospective cohort study, BSO decreased the risk of ovarian cancer compared with hysterectomy and ovarian conservation, but incident ovarian cancer was rare in both groups. Our findings suggest that BSO may not have an adverse effect on cardiovascular health, hip fracture, cancer, or total mortality compared with hysterectomy and ovarian conservation."

HellieC
Posts: 445
Joined: Nov 2010

It is a difficult decision to make - we are all different and we think and react differently to all this onslaught on our bodies.
However, having said that, I agree absolutely with Michaelynn. Taking the ovaries out removes the possibility of ovarian cancer or complications if radiotherapy or chemotherapy is required and at 56, menopause is around the corner anyway.
I also recall my surgeon saying that a significant number of ovaries will fail within a couple of years after a hysterectomy anyway (no one seems sure of why this is, but it is possible that the altered blood supply to the area may be a possible reason).
Of course, it is your own decision and whatever you decide is right for you. But just thought I'd add my honest opinion!
Wishing you well
Helen

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

When I was diagnosed and had the discussion with OB on my hysterectomy, asked him about why removing ovaries? For the life of me can't remember his exact reason, beside the ovaries producing hormones which we don't want...basically telling me no option but remove them.

I must agree with the others on this post when you take ovaries out, should reduce risk of ovarian cancer. Not always true! Did you know even when one has ovaries removed you can still get ovarian cancer? A gal in one of my local support groups had total hysterectomy and still got ovarian cancer. Asked my doc and supposed some of the affects from ovaries are still present, therefore yes we can get ovarian cancer. Crazy hum?

My years of childbearing were way behind me, so keeping ovaries for child bearing wasn't in my picture. Just happy to have the big surgery over with.

Best to you my friend!
Jan

Double Whammy's picture
Double Whammy
Posts: 2303
Joined: Jun 2010

I was, however, post menopausal when I had my surgery. I just want to comment that I feel absolutely no different than I did before they were removed. Since you're 56, you should experience menopause very soon and the issues that accompany menopause will be on your doorstep even if you delay it for a bit by holding on to your ovaries. And then there's the ovarian cancer part . . .

Good luck on your decision. Please listen to your doctors' advice. Get a second opinion if necessary.

Suzanne

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Thinking of you and wondering how your surgery went yesterday...

Please post when you can to let us know how you made out.

Keeping you close in thoughts and prayers...

Laurie

kef
Posts: 3
Joined: Nov 2011

Surgery went well. What a difference--the robotic Da Vinci technique was so much easier than abdominal surgery I'd had five years ago.

The preliminary frozen section showed that the hyperplasia/complex atypia had not invaded past the endometrium. The progesterone therapy may have kept it in cheek though didn't reverse it completely. I feel very lucky there was no spread. I suppose I didn't have to have had my ovaries removed and that gets me a bit glum though I'm so relieved it's all done and over with. I tried my hardest to avoid surgery but just couldn't.

The doctor said it was unlikely it would return, yippee, I'll have to find something new to worry about, or not. I won't find out if I can take hormones or bio-identicals for a month. I want to make sure my bones and heart stay healthy, as well as local estrogen creme for what may ail me.

Back to making sure I get sleep, exercise, food and breathe well. I'm grateful to have wonderful family taking care of me. A friend was over and showed her abdominal scar from where they took skin for breast cancer reconstruction. She couldn't stomach pain-killers, aie, just got through without somehow. She's looking good today, lots of energy.

Thank you.

Kathy

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