ER+ BRCA- but having an ooph...

[carykim]

Hello Ladies--
I've been lurking a while and reading all your informative posts, but now I've got a question.

Even though I'm BRCA-, my onc is recommending an ooph to turn off the estrogen faucet and get me on an AI. I've thought long and hard about it and agree it's the most aggressive I can get, which I feel I have to be with two little ones.

So I've met with the OB/GYN who is going to do the surgery next week and was offered the option to go ooph + hysterectomy. It was presented as "if you're not going to use your uterus anymore, why leave it in there?" The surgery would be done 100% laparascopically so it's minimally invasive.

Does anyone with experience in this arena have advice for me? Should I just get it all out now or stay with the ooph?

I think I'd like to keep my cervix, but I'm not sure why.

Thank you for any guidance you can provide.
xo
Cary

[Petesmom]

Hi,

I had my ovaries removed in 2005 and opted to leave my uterus alone. My OB had never done that before but that's what I wanted done. I have had no problems, had one last period as the ooph was done towards the end of my cycle. I did all of this to get on an AI and starve off the estrogen as I had a recurrence after finishing 5 years of Fareston. So far so good. I am older than you but you don't want your cancer to come back if estrogen if the fuel. The procedure was not at all bad and I was back on my feet the next day. Good luck to you and you will do well.

Petesmom

[carykim]

Thank you, petesmom!

I know the answer--like with practically every decision in my cancer treatment--is that it's up to me and what I can live with. But just knowing I'm not the only one who's had to face it makes me feel better, less alone.

I appreciate your reply
xo
cary

[tricia keegan]

Hi Cary
I don't really have advice to offer but wanted to wish you luck in your decision. I'm older than you and had an ooph last year purely as a preventative measure,I'm highly triple positive but brac -...
The op was fine and I have no regrets,I was'nt given the option of a full hysterectomy though so never had to face choosing. I began Arimidex and apart from some bone loss which I take fosamax for and some joint stiffness I'm doing fine so far. Good luck and keep us posted!

[chrislmelb]

i don't take Fosamax and i swapped from Arimidex to Femara to stop the aches. Not convinced it is much different!!

[kathyc]

I also have surgery booked in 2 weeks for removal of oops. I was 90%er+ so were are closing that door. My worry is instant metapause.You will make the right decision for you.Keep an open mind and gather all the info you can.Kathy

[julierene]

i had the oomphrectomy and i had er- idc and er+ dcis. i decided to go aggressive, and it didn't really matter. i have had dryness, and i feel almost allergic to even KY, so it has been difficult to say i am happy with my decision. for being 32 and still sexually active, it's frustrating. also, going through that change - you might want to read up on menopause emotional symptoms. i didn't have my uterus removed because i didn't have much of that kind of problem in my family history, AND because i felt like i shouldn't remove something without really good reason. with my age, they also didn't recommend the hysterectomy. for me, i was more worried about the estrogen, but they have meds for that. so i don't know what to tell ya there. if you are worried about ovarian cancer like i was, then maybe that would help you decide. but without ovarian cancer in the family, what's the real point?

there are other genetic factors out there for breast cancer families. if you have just a few other cancers spread around in the family, it could be a completely different gene.

[ita]

Hi Cary,

I was er/pr +++, BRCA 1 and 2 neg, and Her2 +++. It was my choice to do a full hysterectomy. I had it done 8/04, I was 33. I'm on Arimidex and Fosamax. The surgery was done laparascopically. I was out the next day. I have experience dryness,no libido and hot flashes. Although I work out every day I cannot lose weight. I think menopause is the culprit for that one. I can't remember exactly why I didn't keep my cervix. I think I was told that if I were to get cervical cancer my outlook would not be good. Having 2 little ones myself it was a chance I did not want to take. As for the Arimidex, I've had no joint pain but I do have ostiopenia of the hip. All in all, I have no regrets with the choices I made. Good luck with your decision and please contact me if you should need anything else.

My best to you,
Ita

[Bev]

Hi,

Not really answering your question, but you could also switch to Lupron + AI. I think that would reduce your risk of ovarian cancer, and you would get all the benefits of an AI.

Lani posted a study a couple of days ago, H, Iressa and some sort of tumb, G or P. If I were you, I would wait a couple of years, only in the hope that they come up with other treatments where you wouldn't wind up in permanent menopause.

Mpause is doable, but I would rather be older than 34. Do whatever is right for you, just thought I would throw out another option. Bev

[Becky]

Welcome

I had an oophorectomy about 2 years ago. My gyne said that there was no need to remove the uterus because the recovery was longer and I got the ovaories removed because my paternal grandmother died of ovarian cancer and I wanted to go onto Arimidex (I had been premenopausal prior but older than you at the time (46)). I was BRCA negative as well.

No regrets. I do have dryness and UTI issues but they have been solvable with meds. The uterus does not have to be removed to gain the positives of no estrogen. Just Monday I had a pelvic scan as a baseline and all was well - good and dried up so to speak. All you have to watch is the bones and I have another bone density to schedule now. I took Zometa IV while on Herceptin to beef up my bones but they were ok but not great before. Ask away if you have any other questions. AIs are better than tamoxifen for those of us who are Her2+ and hormone positive. I have experience no joint pain.

[saleboat]

Hi,

I so remember the anxiety I had about the same decision-- what more can I do to prevent the bc's return? I saw other young women doing things to shut-down their ovaries and wondered if I should do the same.

I went to three different Oncs about my anti-hormonal treatment...and should I get my ovaries out to prevent a recurrence of BC. I couldn't get one Onc to recommend it. One even called it 'surgical castration' which is, in a sense, what it is. It is equivalent to removing a man's testicles.

My age was a big factor-- I was 34 when diagnosed.

The more I researched the issue, the more it became clear that there isn't any medical evidence that clearly stated that it would reduce my risk of having the bc return, which was my main concern. (I don't have a family history of either ovarian or breast, and I tested brca negative). It would have made it possible to take a drug like Arimidex, but that drug has only a modest advantage in absolute numbers over Tamoxifen and I didn't feel that it would make much of a difference in my case because I had a high degree of both er and pr. (Some studies have suggested that Arimidex and like drugs have a greater benefit where only one hormone receptor is positive)

There are trials ongoing now for premeno women confronting the decision of the optimal anti-hormonal treatment. I'm sure your Onc has mentioned them to you-- the TEXT and SOFT-- both incorporate ovarian shut-down.

Here's an article on ovarian shut-down's role in adjuvent treatment for bc (attached)

You'll find some good info/interviews on this site:
http://www.breastcancerupdate.com/

Here's a thread from when I was trying to make a similar decision:
http://her2support.org/vbulletin/showthread.php?t=23729

There was a recent Wall Street Journal article that summarized large observational studies that measured the health consequences of removing woman's ovaries. This is data from the general population, not a population of early-stage breast cancer patients.

Two recent papers published in two major medical journals examined the long-term risks and benefits of removing a woman's ovaries. A report last fall in the Lancet by Mayo Clinic researchers found that removing ovaries before the age of 45 raises a woman's risk of dying during the next 30 years by 70% if she doesn't use hormone-replacement drugs. An earlier study in Obstetrics & Gynecology showed that removing a woman's ovaries later in life, which is the more common practice, still increases her risk of premature death. In that study, ovarian removal before the age of 65 increased a woman's overall risk of death before the age of 80 by 8.5%.
What's surprising about the data is that it directly contradicts the widely held belief in the medical community that removing a woman's ovaries typically will prolong her life. "We were all shocked when we saw the [data] showing that there was such an advantage to leaving her ovaries in for long-term health," says William H. Parker, clinical professor of obstetrics and gynecology at University of California-Los Angeles School of Medicine and the lead author of the Obstetrics study.

To be sure, the data aren't conclusive. Both reports are based on observational studies, which means the women weren't randomized to different treatment groups and other factors may be influencing the results. In the Mayo Clinic study, young women who had ovaries removed but then took estrogen drugs were just as healthy as women who kept their ovaries. But doctors say many women are frightened about the risk of hormone drugs and often don't take them after losing their ovaries.

Most doctors practicing today were taught that the ovaries don't serve any real purpose after menopause. If a woman is going to undergo a hysterectomy (surgical removal of her uterus) anyway, doctors typically advise women to go ahead and have their ovaries removed as well.

While there is no question that the procedure eliminates ovarian-cancer risk, the fact is most women are at extremely low risk for the disease. Ovarian cancer accounts for 6% of female cancer deaths. But the issue of ovarian cancer is emotionally charged because there is no way to screen for it, and it's usually fatal because it is often detected at its late stages.

The problem is that removing a woman's ovaries to prevent ovarian cancer appears to take a toll on other parts of her body. The ovaries after menopause still produce androgens that the body converts to estrogen. The continuing hormone production of post-menopausal ovaries not only affects a woman's sex drive and mood, but it also appears to offer added protection to her bones and heart.

Based on the Obstetrics & Gynecology report, the benefit of keeping the ovaries far exceeds the risk. The researchers calculated the risks and benefits among 10,000 women between the ages of 50 and 54 who kept their ovaries compared with a similar group of women who opted to have their ovaries removed. By the time they reach 80, an additional 838 women in the no-ovary group will have died of heart attacks and another 158 will have died from hip fracture compared with women who keep their ovaries. However, only 47 women in the no-ovary group would be saved from ovarian cancer.

Women with a strong family history of ovarian cancer obviously have more to gain from ovary removal than women with a strong family history of heart disease or osteoporosis. Dr. Parker says the study isn't perfect, but it should at least prompt doctors to have a more meaningful discussion with patients about the full risks and benefits involved in removing healthy ovaries from a woman's body. "This is at least a subject for conversation between patient and doctor," says Dr. Parker. "But that conversation often does not happen."

Also-- I seem to remember that there is some reason that keeping your uterus would be beneficial for sexual functioning.

I encourage you to visit youngsurvival.org-- there are women your (our) age who have had their ovaries out and they can give you a better idea of what it is like to be in menopause at a relatively young age.

I know this is a lot of info at once-- I hope you find it helpful. I used to second guess my decision to 'just' take Tamoxifen. I'm really glad that I stayed this course and didn't give-up any more of my quality of life than needed to this blasted disease.

I hope you can also find a decision that is right for you.

My best,
Jen