Am I crazy to keep my ovaries

[LeahM]

Hi All,

I am going to try to keep a long story short...

In my family only one other woman on my mothers side had BC. My grandmother. Age about 50 had a mastectomy and rads (don't know if she had hormone suppressors or not) and live another 30+ years. During that times she had a complete hysterectomy (for unkown reason) and they found cancer in her uterus. Once the uterus was out so was the cancer..no treatment.

My mom, her aunts, cousins etc all had complete hysterectomies before the age of 40 for reasons not related to cancer. And thus far none of them have had cancer of any type.

So I worry about my uterus. I'm BRCA 1,2 negative.

5% ER+. My onc told me that 15 years ago they would have considered me ER-. I'm on Tamoxifen and don't have any problems with it.

I have discussed at length with my GYN (who I credit with saving my life) the pros and cons of a complete hysterectomy at this point.

IMHO the cons outweigh the pros.

But she wants to take my uterus out.

Says Tamox increases your risk of uterine CA and I have had some crazy crazy crazy periods since it came back. I have had uterine u/s because of that but nothing has been seen. I can go months without a period and then bleed for 3. solid. weeks. 3!!

She says taking out my uterus will stop my periods (yay) without putting me into early menopause (again yay).

Throughout this time of mine spent in cancerland my ER status hasn't been a huge concern of mine, not as huge as my HER2 status.

So I have agreed to remove my uterus...early in 2015 and keep my ovaries (for now). I'm hoping I don't regret this in another 15 years.

Has anyone else had just their uterus removed? Do you think I'm off my rocker for keeping my ovaries?

Your thoughts on this are very welcome.
Thanks
Leah

[tricia keegan]

Hi leah- sorry I can't help as I kept my uterus but lost my ovaries, I really wasn't offered a full hyst and didn't ask at the time but my Onc felt that I was so highly positive I really needed to get rid of the ovaries and reduce the estrogen as much as possible, it was the right move for me and I have no regrets. I hope someone else can advise you more.

[carlatte7]

Yes, lost uterus and left ovary which had a 6 cm cyst. Did menopause at 35 w/ hyst, menopause at 48ish and killed the remaining ovary with chemo. My doc told me i wasnt a candidate for HRT bc of both gma's bc, and blood clot in leg w/ last pregnancy. I would kick them out, but thats me being "cautious."

[thinkpositive]

Leah,
I had ovaries and uterus removed. When I had my surgery, I knew that my uterus would be removed. However, I opted and was advised to have my ovaries removed because in addition to the HER2 BC on my left breast, I also had ER+ PR+ BC on my right breast. Removing the ovaries meant and having a double mastecomy meant that I didn't need to take tamoxifien.

I was 55 at the time of the surgery so I didn't hesitate having the ovaries removed.
However, you are quite a bit younger so I can understand why you may want to keep them. In making my decisions on treatment, I always asked myself if I was doing everything that I could to fight this cancer and still have a good quality of life. Perhaps this could also guide you on your decision to keep your ovaries?

Good luck to you,

[roz123]

you are not crazy for wanting to keep your ovaries - ovarian function protects your heart and bones. It depends on your age, how close are you to natural menopause?
the benefit to ER+ cancers is hotly debated, some say as long as you are on tamox you are fine (you cant strip your body of all estrogen) other say to remove the biggest source. None of my doctors can agree
the SOFT and TEXT trial results being issued at the end of the year should help answer this question for all of us

my MO here wants me to remove and go on Femara as the initial results are saying in pre-meno women it offers a increased benefit. there is a 4% difference. My MO at DF wants me to wait until more results are released

[suzan w]

I had ovaries, not uterus removed. I wonder if I should have had uterus removed too!! Or if I should have it removed now!! I think I will always wonder about ALL my remaining body parts!!! You will make the right decision.

[LeahM]

Thanks All
Roz I am 41. I have no idea how close I am to natural menopause because there is no one in my family to ask. No one went thru natural menopause...except maybe one aunt on my dads side.
I am feeling comfortable keeping my ovaries. According to info I have found, because I am BRCA- and only 5%ER+ my chances of another BC or ovarian cancer are no higher then the average woman.
But...removing my ovaries at this age increases my chances of heart disease by 40%. I don't like that number. Heart disease is the #1 killer of women and quite frankly I don't like the way pink and red look together. Tacky. I will stick with one color for as long as I can.
Will schedule this surgery for early 2015. No rush...
Leah

[roz123]

Leah you r young! I was 42 when diagnosed. 44 when my periods came back. They shut me down with Lupron. I just stopped. The SEs were terrible. Im going to see if im finally in meno but thinking long and hard about ovarian suppression bc of the numbers you just quoted.

[Lien]

I still have my uterus and ovaries, despite my hormone positive BC. I live in the Netherlands, Europe, where docs are not as aggressive. We don't sue them if we find out that the decisions we made together turn out to be wrong. We chalk it up to bad luck. Medicine is not an exact science.

I wanted to keep my ovaries for the exact same reasons you are quoting: heart health. And bone health, too. I had Zoladex shots to shut my ovaries down for 4 years and took Arimidex, but then I was ER/PR+. I was not exactly happy when my periods returned at age 50, and they stayed with me for about 3 years before petering out quietly.

The hysterectomy will take care of the bleeding, so that should be a relief. You will have to go through menopause in a couple of years, but if you are lucky, your ovaries will be supporting your heart and bones for another ten years. That's a big bonus.

So all in all, I think you are probably doing the right thing.

Jacqueline

[LeahM]

Thanks all, I do believe this is the right decision. Especially since I began to bleed again today. Just two short weeks after I last bled...tmi....
Just hoping my insurance company will agree. Will meet again in gyn at the end of Oct to schedule it.