Triple positive DCIS...should I remove my ovaries?

Tamiami

Hi all~

I was diagnosed at 49 with triple positive DCIS. Opted for bilateral mastectomies because of my strong family history and to avoid radiation and tamoxifin. I had my uterus removed many years ago, but kept my ovaries. Now at almost 53, my gyn says that my blood results show that I have not even begun menopause, and that I should consider removing my ovaries to avoid the extra estrogen production that may go on for several more years. That makes sense to me, but I'd like any input...positive or negative...from you experienced ladies. What would you do?

Tami

inks

I did not have "in situ" BC. Surgical menopause is harsh and irreversible it may affect your bone health and your heart. Think long and hard, weigh your risks and benefits from this. I have been without my ovaries for a year and my vagina is as dry as a Sahara, it has affected my mood and sleep s well. But I am also stage III and BRCA1+ so I had no choice. With DCIS and LCIS it is not commonplace to recommend removing the ovaries unless something else is going on as well. Do you have some other gynecological issues that warrant removal of the ovaries?

Jenwith4kids

I had mine removed over a year ago - I do get some hot flashes, but everything else is a-ok.

ElaineTherese

Are you on Tamoxifen? Why doesn't your oncologist think that's enough? I was diagnosed with triple positive IDC at Stage IIIA. I am having my ovulation suppressed through monthly Zoladex shots. This allows me to take Aromasin, another "estrogen sucking drug." I asked my OB/GYN about having my ovaries out. His feeling was that I should keep them if I could tolerate the Zoladex. Studies show that women who keep their ovaries live longer than women who don't. Zoladex is OK; I get my shot and get my port flushed (want to keep my port "just in case"). It takes about 10 minutes.

Best wishes to you; hope you can figure out what's best to you.

lisa-e

I would talk to an oncologist. Gyn's are not experts in the medical treatment of breast cancer, so I would be suspicious as to the motivation of your gyn in suggesting surgery that will benefit her pocket book and is not normally suggested for treating in-situ cancers.

ShetlandPony

I agree with lisa-e. Talk to an oncologist about this. If the onc does think your ovaries are a problem, at your age I would think suppression with zoladex or lupron for a few years would be an alternative to surgery. And it is reversible.

Tamiami

Thank you ladies! I had not heard about estrogen suppression.

Inks~ Thanks for the info, and yes I'm afraid to lose moisture down there...it's about the only positive thing I have going for me sexually. I know it's not normal to suggest removal, and my gyn is on the fence about it, but she's talked to my breast surgeon and her gyn partners about my case. I do have ovarian cysts that they've been watching for awhile now and my estrogen level is considered abnormally high.

Jen~ Glad to hear your medical menopause went well.

Elaine~ I'm not on tamoxifin because I had bilateral mastectomies, so no need for it. Thanks for the suppression info!

Lisa~ I agree with gyn's not being cancer experts. What type of oncologist would deal with this? Medical oncologist? I only had one appt. with an oncologist before having my mastectomies and she was a complete bitch...yelling at me for "over-reacting" because I wanted bilateral mastectomies vs. lumectomy/radiation/tamoxofin. Good thing I didn't follow her suggestions as I had LCIS in my "non-cancer" breast after pathology.

Shetland~ Thanks for your input...very sound!

Have a wonderful holiday season everyone and thank you again!

Tami

slv58

Hi Tami, you should probably speak with an oncology gynaecologist. I've had an ovarian cyst for a year that has not resolved and have to decide if I want it removed. This is who is following me and I was referred to her by my oncologist. It's a very hard decision as ovaries still produce estrogen and androgens, although very small amounts, after menopause. I'm trying to research as much as I can before making my decision and have an apt to discuss all my concerns on wed. Wishing you the best with this decision.

Tamiami

Thanks Sly...would you mind keeping me posted after your appointment?

Tami

lisa-e

Tamiami, I would find a medical oncologist to discuss this issue with, or possibly as slv58 suggests, a gynecologic oncologist.

Tresjoli2

my gyn and my onc both agreed that there are numerous benefits to keeping your ovaries. Their collective answer to me is that we should keep my ovaries full stop. I take a Lupron injection every three months

slv58

Tami I will update you, although our situations are unique to us so please keep that in mind. I do know my regular gynaecologist told me that the latest studies (I believe it's called the Parker study) showed that women who keep their ovaries have better quality of life, live longer and have less incidence of heart disease, osteoarthritis and for some reason which their not sure why, lung cancer. I've also read that they aren't exactly sure what role androgens play in post menopausal women but know it is tied to happiness and sexual function. Based on this I would love to keep both ovaries however ovarian cancer is extremely hard to detect early and although my Gynacology oncologist feels there is a slim chance my ovarian cyst is malignant, she can't garantee it. I've been watched by vaginal ultrasound which is suppose to be the best diagnostic tool and at one point they thought it was a Fallopian tube cyst. If they can't tell the difference between an ovary and Fallopian tube, how am I to feel confident that they can tell my thinly septated cyst isn't malignant? Im triple negative so our situations are different, but I think it's important that you research as much as you can before you decide. 

Hugs, Shari

swimmersmom94

Hi, I am considering having my ovaries removed and am waiting on a referral to see the doctor. Why are they saying women who keep ovaries live longer? I was ER positive but am also post menopausal and heard that even so, your body still produces estrogen.