Opinion on getting ovaries removed?

[Bowlingpink]

My name is Marsha Weber. Back in 2006 I was diagnosed with HER2 by FISH, 5.4 amplified, my Estrogen was 70 percent and the PR was 30 percent. I am wanting to find women between the ages of 33 to 45 that has had the HER2 neu by FISH. I had a Lumpectomy of my Left Breast and 9 Lymph nodes removed and they were negative. My husband wanted no more children after the second child I was still questionable, but that was before I had Breast Cancer, if both of us wants any more children adoption would be our answer if I do go with getting the Ovaries removed. We are at the point where all of the out of pocket is met plus the deductible is met. Plus my husband would like to go back to having to wear rubbers, so would I, I hate the smell of the Latex. The reason why I am so apprehensive is that do I want to put myself and my family into Hell? this earlier because I am only 34 but I will be 35 in January of 2008, also it is not because of the surgery itself. I would like to hear other women's story on how they decided on their out come after they ended their treatments. Did they get the surgery done, did they wait for a couple of years, or did they find other alternatives other than the surgery and Tamoxifien? Plus did their Insurance Company pay for the alternatives? Also I would like to hear about after sugery how bad was their moodiness was it good or bad? After the waiting period was sex any different?

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[saleboat]

Hi Marsha,

Welcome.

Wondering why you would consider removing your ovaries at your age? I assume you had an early stage cancer? Were you tested for BRCA, or do you have a family history of ovarian cancer?

I also confronted Her2+ breast cancer at a relatively young age. And for me, there is no way on earth, given my age and lack of family history of ovarian cancer that I would have my ovaries removed. There are potentially serious health conseqences to removing them (heart, bone, potentially cognitive issues), and given that there is NO PROVEN benefit to doing so (as far as preventing the recurrence of breast cancer) I have not gone that route. Not to mention the quality of life issues.

Some, at our ages, have had their ovaries removed because of a family history of ovarian cancer or a genetic predisposition to the disease.

It may seem to 'make sense' that removing one's ovaries would be a good thing--remove any hormones that are out to fuel the cancer-- but if we relied on what seems to make sense, rather than medical evidence, we'd all still be getting super duper radical masectomies and high dose chemo and stem cell transplants-- two cancer treatments that were widely used on patients without sufficient medical evidence that were later proven to be ineffective-- after much damage had been done to women.

Good luck. Please keep asking questions.

Jen

[tricia keegan]

Hi Marsha
I was older than you at 45 when I was diagnosed and decided to have my ovaries removed in August '06 purely as a preventative measure as I'm highly triple positive, my onc agreed there was good reason to do so and felt ovarian and breast cancer are so closely linked it would cut my overall risks.
The surgery was no big deal at all and i was just a little sore for a day or two. I had no crazy mood swings at all, I did get some heavy hot flashes for a month or so but these began to diminish after that.
I've had no problems other than some bone/joint pain and stiffness from arimidex although my last dexa scan did show some bone loss which I now take fosamax for. It's a tough decision so research it well and go forward knowing you did the right thing for YOU!
Good luck:)

[madubois63]

You may want to ask your question on this board...
http://www.youngsurvival.org/community/bulletin-board

I was 36 when first diagnosed. No one mentioned removing my overies then, but I wish I did. Four years later, I had a recurrance. I was to weak and had lung problems (mets), so the surgery was out of the question. I have taken Tamoxifen and my period came back. I am now on Femara and take Lupron shots (once every three months) to shut the overies down. I do get energy surges (hot flashes) every once in a while, but mood swings are not a problem. If your done having kids and hate latex, this may be a good choice for you. For every problem, there is a relief, you just have to ask.

[Susan]

Hi: I just got back from an appt. with a gyn. yesterday, and they also want to take my ovaries/uterus too. I'm now 49, and I'm not in menopause! My oncol. wants me to get on arimidex, which I can't have until I'm post meno. So anyway, I'm going to have the surgery. I,m going to have it done all laporoscopic. The surgery is called LSH, and I guess in one week, you can go back to work, and feel good. I have to decide when to do it. We are going to Hawaii for a vacation, the first of November, and the doctor said if I have it done right away, I should be fine for the trip. So, now I just have to figure out, if I want it done before or after. Since chemo, and herceptin, my periods have been very heavy, and lots of hard cramps, so I guess if have it done before, I won't have to worry about that happening on the Islands!

So many desicions to make, huh?

Sue

[kathyc]

I was DX at 42 yr her2+ 90% er positive stage 1. I had my overies removed in July/07.I was told that being high % or er it was like fertilizer for the cancer and after surgery i could take Femara that was easier on me. The side effect after surgery for me are hot flashes and night sweats.No mood swing(i asked my partner to confirm) and sexually we are now starting to use a lubricant.Overall it's not bad, just an ajustment.Hope this helps.

[mts]

Hi Bowlingpink-

It seems to me that with your high ER level, you would remain on Tamoxifen... just because you remove the hormone factory (ovaries) may not eliminate the estrogen issue... the body stores estrogen in the adipose tissue - so there is no guarantee that estrogen is totally eliminated with ovary removal.

If your husband wants no more children, then why doesn't he step up and consider a vasectomy and let you treat your cancer without having your ovaries removed.
My husband had a vasectomy and in no way has that procedure affected his "performance".

Maria (MTS)

[Bowlingpink]

I did go and get the Genetic testing done, I was negative. Is their anyone out there that has been on Tamoxifen for 5 years, and has their Her2 Cancer came back.

[mindersue]

Hello,
I'm 39 and have been on Aromasin and Lupron shots (to shut down ovaries) for over a year. I made that choice over Tamoxifen because I thought it would be more aggressive, giving me more protection.

The only bothersome side effect I have is no libido. Most of the time that's okay! But it's a drag when I think about my husband. I enjoy sex, I just don't feel like starting it. So, it's not that bad.

Long term effects like bone loss concern me. That's why I'm doing the Lupron and not ovary removal at this time. I still have 4 more years on Aromasin, so I'm thinking maybe new research will help me choose whether or not to have my ovaries removed later down the road.

Thanks for posting,
Mindy

[KRISS]

I just had my uterus and ovaries removed on monday. I had three contributing factors that made my desicion for me. If I would have only had one or even possibly 2 I would have kept my ovaries. I am 43 and am scared of a life without estrogen but am also scared of it bringing my cancer back. My onc and gyn said it would be easier to combat the other problems than cancer and I agreed. This choice is truely an individual one. We all need to decide what is more important, what can we personally cope with better. It's hard but I'm sure you will come to a conclusion that is right for you. Good luck.
PS go laproscopically (sp) if you can, I had to do abdominally and it's a $^#%&&% lol

[Debra]

Marsha -

I was 40 at diagnosis. I had my ovaries removed when I was 41. I was only 19% + for estrogen and about 17+ for prog.

I decided to have my ovaries removed because #1, I knew I was going to be on tamoxifen----therefore, that was going to shut down any estrogen from the ovaries anyways. I never did get my period back after chemo at age 40. So I figured, my ovaries were already in menopause anyways so why not just have them out. Plus, I was then able to go on an AI which has shown to be more beneficial anyway for us HER2.
However, at your age, you may not be knocked into menopause due to chemo. At least you didn't indicate that anyways. If that is the case, I maybe would have put more thought into it. But if are ovaries are going to be chemically shut down anyways and not produce the estrogen, why keep them.
The meds are to reduce the estrogen secreted from the adrenal glands which still secrete even with the hysterectomy.