Prophylactic ovary removal ???

[kristen8594]

Hello,
I am wondering if any women here have had a Prophylactic ovary removal so they can go on Femara?
Little backround....I have been on tamoxifen for 5 years, ending in October. My doc was having me wait three months to be sure that I did not get my period back. I am 47 years old and pretty much went into menopause during chemo. Unfortunately last week suddenly I got my period back. I called my GYN and she is checking me out and said I could have post menopausal bleeding. On Tuesday I am having a hysto-sonogram(?).
My question is...if this is a regular cycle it is going to prevent me from going on Femara and I am worried about that. Should I consider a Prophylactic ovary removal?????
Any thoughts would be much appreciated.
Thanks,
Kristen

[dlaxague]

Hi,

Prophylactic ovary removal would actually be to prevent ovarian cancer. But that's a technicality and I do know what you're asking.

I think that it helps to have some numbers. Have you and your onc ever used Adjuvant! online? You can enter in your details of diagnosis, and get a prediction of your risk of recurrence after five years of Tamoxifen. There is not currently the option to include HER2 as part of the information but Peter Ravdin says it will be in there, soon. He says that he thinks increasing the prognostic figures by about 1.5% is about right, for HER2 positivity. But then you'd also have to adjust for Herceptin's benefit, if you received Herceptin. Probably better to just leave the HER2 out of it for now, and assume that Herceptin trumps the HER2, leveling the playing field so to speak, and that the figures are fairly accurate.

He also says that "initial chemo does not affect late events", which confuses me but is apparently true. We do not (yet) know if this is true for Herceptin or not.

With that number (your risk of recurrence after five years of Tamoxifen), you can know more closely what benefit the AI (with oophorectomy) would offer.

Just using round numbers for clarity, say your risk of recurrence now (as opposed to your initial risk) was 10% (10 of 100 with your diagnosis now at risk of recurrence). Ravdin uses 40% as the relative benefit of AI (letrazole) after Tamoxifen. So 40% of 10 would be 4. It would offer you a 4% reduction in risk of recurrence (from 90/100 chance of survival to 94/100). Some people would jump at that, others would say it's too small to be worth it.

On the other hand, using it the same way but for someone whose risk of recurrence was now very high, say 50%, it would decrease their absolute risk now by, uh, 20%? Yes, I think that's right (40% of 50% is 20%). So their chance of survival would jump from 50% to 70% and most people would probably go for that.

Using Adjuvant!, I have to enter in all very bad details to get that risk up as high as 50%, after completing five years of T. Most will be at less risk, hence will reap less benefit from an AI after Tamoxifen.

There's also the option to stay on Tamoxifen. There is recent evidence that there may be a benefit to that, after all, from last year's SABCS: http://www.medscape.com/viewarticle/567735 or google "peto tamoxifen after five years" and you'll lots of hits.

'Wish that there were a clear and easy answer. Others will have more to say about their experience. Herceptin has not been standard adjuvant treatment for very long, so there are not many women, so far, who've had Herceptin and are now completing five years of anything, alas-for-knowing-answers.

Debbie Laxague
(I almost deleted this and didn't respond at all because I feel like all I've done is make things more confusing. But things ARE confusing, so I guess it's helpful to know that?)

[kristen8594]

HI Debbie and thank you for the reponse. I am sorry I wasn't very clear on calling it that, what I did mean was a oophorectomy. I was calling it a prophylactic ovary removal because we were discussing ovarian cancer as well. I had been on tons of fertility drugs which at one time was said that it did increase your risks of ovarian cancer. Anyway being her2+++ and not getting the herceptin drug because of timing (it was not offered as standard at the time) and now on nothing it has me worried. If this is a regular cycle starting up then my hormones have pretty much gone back to normal, so I can't see why a oophorectomy would not benifit me so I could go on femara. I am sure many have been in the same spot and wondered what they have done.
Thanks again for the response.
Kristen

[dlaxague]

Hi Kristen,

Sorry, I assumed you'd had Herceptin because so many here have. Not that it changes this discussion (but it takes out some of the rambling I did, smile).

... so I can't see why a oophorectomy would not benifit me so I could go on femara

Well, yes, you would get "some" benefit. But almost everything also has risks/downsides in addition to benefits. So you want to weigh the risk and benefits both. Oophorectomy, for example, is a surgery and that carries a small risk in itself. Taking an AI certainly has risks. Some are relatively minor and probably relieved by stopping the AI. Others are less certain at this point, especially for someone as young as you are who could live with the side effects (if they are irreversible) for many many years.

So a useful way to make a decision as to whether the risks are worth the benefit, for any one individual, is to look at some numbers that give some idea of those risks and benefits. We'll each have different risks and benefits, and we'd each make different choices, even with the exact same information in front of us. But I think it's always a good idea to have that information in as much detail as possible. "Better" and "worse" just don't do it for me. I'm much less anal than before diagnosis but obviously, am still a recovering control freak.

I'm not trying to talk you out of this. I just want you to have as much information as possible.

Rambling OT now: It will be interesting to see the stats as the adjuvant Herceptin trials continue reporting longer-term data. I think that they were a little surprised at how many early recurrences happened, in the control arms. Soon we'll begin seeing what happens later on, with HER2+/ER+ cancers. Do they behave like the ER- ones, with more recurrences but most early and few late? Or do they behave more like ER+/HER-, with a continuing risk many years out?

In these podcasts that I've been listening to, Neil Love asks lots of questions of the experts he interviews, and a common one is "how are you treating women with a recurrence who had adjuvant Herceptin?". The answer is often that the MD has had very few or no women in this category - that their patients who got Herceptin just don't seem to be recurring. Cool!

Debbie

[Chelee]

Hi Kristen, If you have gotten your monthly friend back...your correct...this would be a problem. You cannot take an "AI" such as Femara unless you are menopausal. My onc wanted me on an AI instead of Tamoxifen and she thought I would stay menopausal after chemo. I did stay in "chemopause" for about 3 or 4 months after I finished chemo but then my period came back.

What you want to do is have your oncologist check your FSH & Estradiol to see where your at? That will tell you if your menopausal or peri-meno. You have a couple choices depending on your labs. You can always go on Lupron or Zoladex injections to chemically induce menopause so that you can take the Femara...or have a ooph as you mentioned.

But make sure you gather alot of information on this and talk to your oncologist. Maybe even get a 2nd opinion. Oncologist all feel differently about this issue is seems. I had a cyst on one ovary that had to be removed so I decided I might as well have an ooph since I was almost 50 yrs old. (I was constantly having other issues with my onc at the time that helped me make that decision too.) We don't even want to go there. lol

If you decide on an ooph its a very easy surgery and fast recovery. But take your time and get the information you need first. If you want to try the Zoladex or Lupron in order to go on Femara...make sure you still have your onc check your FSH and estradiol levels at least a few times. Maybe every two or 3 months just to make sure your really menopausal. You don't want to be on Femara if your not post-menopausal. Femara will not work if your not post-meno. (And you are right...there are many other woman here that have had ooph's.) It's a personal decision that only you can make for yourself. Talk it over with your onc and see what he/she says. Good luck to you.

Chelee

[madubois63]

I'd like to chime in on this one...

IN MY OPINION (this is based on my experience and mine alone and is also in retrospect), if you are ER+, take them out now. If you are getting your period, then your body is making estrogen (I believe the thyroid also makes estrogen, but the ovaries are the biggest culprit). Estrogen is food for estrogen+ bc.

Anyway, I wish I had mine taken out after my first bout with bc (I am not saying you'll have a reoccurance). I was much stronger than, had better insurance and maybe it would have helped in extending my remission time or stopping a reoccurance altogether???? After my second reoccurance, I tried to have them removed; but by then, I had crappy insurance and it would have cost me a fortune (this would not have stopped me, but it would have hurt my already hurting, non-existing finances). Also (more importantly), I was physically exhausted and recovery would have been slowed (a year of chemo/Herceptin, bc in my lung had caused fluid build up and a weakened lung) and it could not be done the easy way because I opted for tram flap reconstruction that herniated in the lower abdomen area. I tried to have the ooph, but the anesthesiologist actually canceled the procedure (even though I had clearance from my onc and my cardiologist) as I was on the gurney being wheeled in to the operating room (not once but twice)!!! He didn't want to put me under because of my history...My point is that things can change making a simple procedure a major operation. If you do it now, You won't have to worry...Once again, just my opinion.

[mimiflower07]

hi, just thought i would throw my 2 cents in. I have just recently had my ooph for the exact reasons you are faced with. I wanted the AI. My period did return. My gyn onc believes that if you see your period return and you are er++ you more then likely to see your ca return.
Not all will agree but i did...so that was my decision. I also started on tamoxifin. however i still am recieving heceptin.
good luck...surgery went well with minor sore neck.
Suzanne

[Petesmom]

Hi Kristen,

I was 52 when I had a recurrence and still getting a regular period. My onc didn't think I should have my ovaries removed and prescribed Tamoxifan. I took that for a couple of months and decided to get rid of my ovaries so I could take an AI which appear to work better in women who are HER+++. I had it done lapro (3 years ago) and I don't regret doing it. I feel that I made the right decision and have gotten past the side effects from Arimidex. It's tough to know what to do but for me, losing the ovaries was the right thing to do. Good luck to you.

Petesmom

[tricia keegan]

Kristen my onc agreed to referr me to a Gyno after tx when I enquired about an ooph. He was in agreement that as highly triple pos it could only benefit me to start arimidex. The surgery was the easiest I ever had and I have no regrets. I've been taking arimidex for two years and do have the usual side effects of stiffness/joint pain but am still cancer free so it's worth the aches!

[Cannon]

Ditto - actually, I had my ooph at the same time as my mastectomies (one required, one prophylactic) - I was 43 at dx and took a very aggressive approach.

[DLL]

Hi, I've completed chemo (TCH) and will finish radiation next week. (Herceptin will continue for the full year, of course.) Tamoxifen is next on my treatment plan. I am ER+/PR+/HER2+. I am also age 47 and pre-menopausal, but now in "chemopause". My oncologist has mentioned if there is ever an opportunity to have my ovaries removed, do it! My question is, does health insurance typically cover a surgical procedure to remove the ovaries to shut off the estrogen for a highly ER+ pre-menopausal woman, when there is nothing wrong with the ovaries per se?

Thanks!

[Becky]

My insurance company paid for the ooph under the same circumstances as you. I was 46 at the time and got my menses back

[Petesmom]

Hi,

My insurance company did pay for my ooph which was also prophylactic. I was 52 at the time.

Petesmom

[Cannon]

My insurance also paid. I did it at the same time as my bilateral mastectomy -- in for a penny, in for a pound!