what is the current thinking on ooph for ER+

roz123 · 07-04-2012, 08:41 AM

just wondering for those of you who are ER+ what your oncs are saying about a ooph (ovary removal). I am on the fence on whether or not to do this. Onc says as long as I am not having periods (i am premenopausal) then i am in menopause and an ooph is not necessary. I have not had a period since my 2nd chemo. My gyn says that whether you remove your ovaries or shut them down chemically the side effects are the same so if i feel better just having them out then she would remove them

what is the current thinking from your oncs on this? i know it changes from time to time due to new reports/studies coming out

Becky · 07-04-2012, 09:36 AM

It depends on a number of factors. You don't say how old you are. Also, are you in menopause or chemopause. For example, like you, I stopped getting my period after the second chemo (had Ac followed by taxol so I had 8 rounds). About 6 months after my last chemo (and 9 months since having a period), I got my period back. I was on Arimidex (still am) so it was worthless until I got my ovaries removed. Lesson learned - get your LH, FSH and estradiol levels done (via blood test). It is the only sure way to ensure you are menopausal and not chemopausal.

I should have known better as I had had a gyne appointment where they wanted to do a baseline uterine thickness ultrasound. That ultrasound showed that I had ovarian activity (about 2 weeks before I got my period back). The activity was on just one ovary (that's all you need) and it appeared as if I was going to have a double ovulation - which I probably did since I had my period about 2 weeks later. Got ooph (was 46 at the time) and that was that. Just make sure, especially if you are taking an AI and not Tamoxifen. At least Tamoxifen protects you no matter if you are pre or post (or peri) menopausal.

roz123 · 07-04-2012, 12:17 PM

thx becky Im 43 so not even close to natural menopause. I did have all my levels checked and i am officially in menopause. I also wanted to make sure that i was so i asked my gyn to run all the tests. So I guess you had the ooph b/c your periods came back?

Becky · 07-04-2012, 01:11 PM

I was talking to a Sloan Kettering onc once at a show who said any woman under 50 deemed in menopause from chemo should get the LH, FSH and estradiol levels checked every 3 months. You can come right out of it in a snap.

Yes - I got my ovaries removed because I came right out of it in a snap (my blood work was menopausal 2 months before - we ran the blood to decide on Tamoxifen or Arimidex right after rads were done).

tricia keegan · 07-04-2012, 01:55 PM

I was 46 at the time and my Onc said my period could return up to a year or more after chemo and he agreed on an ooph as a preventative as I was so highly triple positive and I've had no regrets and take Arimidex still.

JennyB · 07-04-2012, 03:10 PM

I had mine out in April I'm 35, onc said no way I would come out of menapause but I 'felt' hormonal so got the nurse to take extra bloods - she called the next day said they were all opposite to 2 months prior!
I did have the zoladex shot for a few months while waiting to see how I coped with menapausal symptoms - but considering they weren't going to let me be hormonal it really was a bit of a moot pont!
I would do anyting to improve my chances and haven't regretted my de cision one bit I don't want more kids just want ot see the ones I have grow up!
I make sure I take calcium and Vit D every day to try to help with my bone health since I am so young but othere than that nothing else is different and I am sure I still get PMT!!

good luck with your desicion

Jenny

sassy · 07-04-2012, 03:13 PM

I was 45 at dx and showed in menopause for four months, then blood tests showed reversal. My onc chose to chemically induce meno with Lupron because he felt Lupron had other benefits for me also. Did that for four years in addition to Arimidex, til added benefit was exhausted and then had oopherectomy.

One point my onc made clear was that at any point while I was on Arimidex if I had any sign of a period, to immediately stop Arimidex. He pointed out that in other countries Arimedex has actually been used as a fertility drug!

I was also triple positive and would recommend ooph over chemical unless your onc feels there is other added benefit for you.

roz123 · 07-04-2012, 05:11 PM

thanks for your quick replies
i WANT an ooph! both my onc's have told me that they do not want me to have it - they said if my periods came back then they would shut me down chemically (lupron) first to see how I "do" - but i agree that this is a moot point since meno is meno whether chemically induced or surgically right???
anyway i think i finally have one onc on board and have already consulted with the gyn who has agreed to do it
thanks so much

Jackie07 · 07-04-2012, 05:50 PM

Hi, roz,

Didn't see this thread until now. Not sure if you still care about getting more info...

My Er+ is only 5 %. I started taking Tamoxifen in 2004 after finishing chemo and radiation. Had a recurrence and did bilateral mastectomy in 2007, then chemo and Herceptin. Had to stop Herceptin after 18 week TCH and then just 4 weekly Herceptin because of heart problems.

Then my 2nd Brother was diagnosed with colon cancer. He's been doing very well after surgery and chemo (not required, but he wanted it.) I looked up the Web and found a cluster called HNPCC that seemed to fit our family profile as Mother is survivor (now 14 years) of Non-Hodgkins Lymphoma.

I think if you have family history and want to reduce the risks of getting ovarian cancer, then ooph should be considered. Have you done any BRCA test? My oncologist did not think it's possible for me to have any BRCA genes. Yet we did find a tiny trait - turned out a Jewish group had settled in China more than 2000 years ago.

Having ooph is not a guarantee - I've read there's a tiny possibility of getting peritoneal cancer (?) even after a ooph.

There's a National Institute of Health database called 'PubMed' where you can research medical findings.

Glad you are taking an active role in taking care of your own health. Sending you good vibes.

Below is the abstract of a recent article on the subject:

Fam Cancer. 2012 Jun 19. [Epub ahead of print]
Breast and ovarian cancer risk management in a French cohort of 158 women carrying a BRCA1 or BRCA2 germline mutation: patient choices and outcome.

This P, de la Rochefordière A, Savignoni A, Falcou MC, Tardivon A, Thibault F, Alran S, Fourchotte V, Fitoussi A, Couturaud B, Dolbeault S, Salmon RJ, Sigal-Zafrani B, Asselain B, Stoppa-Lyonnet D.
Source

Department of Tumor Biology, Institut Curie, 26 rue d'Ulm, 75248, Paris cedex 05, France, pascale.this@curie.net.

Abstract

Description of the various modalities of breast and ovarian cancer risk management, patient choices and their outcome in a single-center cohort of 158 unaffected women carrying a BRCA1 or BRCA2 germline mutation. Between 1998 and 2009, 158 unaffected women carrying a BRCA1 or BRCA2 gene mutation were prospectively followed.

The following variables were studied: general and gynecological characteristics, data concerning any prophylactic procedures, and data concerning the outcome of these patients. Median age at inclusion was 37 years and median follow-up was 54 months.

Among the 156 women who received systematic information about prophylactic mastectomy, 5.3 % decided to undergo surgery within 36 months after disclosure of genetic results. Prophylactic salpingo-oophorectomy was performed in 68 women.

Among women in whom follow-up started between the ages of 40 and 50 years, prophylactic salpingo-oophorectomy was performed, within 24 months after start of follow-up, in 83.7 and 52 % of women with BRCA1 and BRCA2 mutations, respectively. Twenty four women developed breast cancer.

Ovarian cancer was detected during prophylactic salpingo-oophorectomy in two women (2.9 %). In this cohort of French women carrying BRCA1/2 mutations, prophylactic mastectomy was a rarely used option. However, good compliance with prophylactic salpingo-oophorectomy was observed. This study confirms the high breast cancer risk in these women.

Pray · 07-04-2012, 09:07 PM

My blood work showed I was in menopause for 5 months and then it jumped and I wasn't. Then three months later I was. This happened 2 more times. My onc. did not want me to have my ovaries removed, he said it could cause a new set of problems and I agreed. I have been in menopause for just under a year now and taking Arimidex. I don't believe where cancer is concerned there is ever any sure things.

suzan w · 07-05-2012, 07:50 AM

I had my ooph because of that nagging little voice in my head!!! I finally convinced my primary care phys. to order the BRCA...my onc did not feel it was necessary. I came back BRCA+ and the next week...out came the ovaries!!! Listen to your little voice!

AlaskaAngel · 07-05-2012, 11:21 AM

Your question is an especially important one for people at high risk for breast cancer and for those who have breast cancer. And your question is not being asked often enough and is not being honestly answered by the medical profession.

The problem is that so many medical providers and patients continue to rely too heavily on the very rough guideline that says that one is menopausal if one has not had a period for one year. The North American Menopause Society uses that definition for the group of all women, in their directions under "Confirming Menopause". It may be okay to use it as a very rough guideline for the entire group of women in general, but not for those who are trying to use it in a more crucial situation like breast cancer.

There is debate out there about how reliable that simple definition is, and about how reliable measuring hormonal levels is, because they may or may not provide an accurate picture, due to the results of hormonal testing being static and the actual patient's hormonal testing being fluctuational.

Some women do not become fully menopausal even into their late 60's and early 70's. The average age is 51.

I see patients and medical providers using the rule of thumb over and over as if it provided definite justification for thinking the patient is truly fully menopausal, yet no one has actually demonstrated that is true or to what degree it is true, and there is some information to the contrary.

It may also be true that people who develop breast cancer are more likely than the general female population to be less likely to become fully menopausal until a later age, if at all.

Despite the greater need in particular to more fully investigate the hormonal process in behalf of women who are at higher risk for bc or who have developed bc to get a better understanding of how hormonal development and cancer are related, it has taken a back burner to research for toxic treatments of breast cancer.

Breast cancer aside, there is clear question about the validity of the rule of thumb based on the unexpected pregnancies that continue to occur for some supposedly "menopausal" women.

This raises a question about the value of chemotherapy in comparison to the use of ovarian suppression by other means or by surgical removal. A clinical trial has been in progress for a long time about this question, and I don't know if there have been any preliminary results reported out or not. A previous clinical trial done with chemotherapies that at that time did not include taxanes demonstrated that the use of CAFx6 plus tamoxifen was equal to ovarian ablation.

The question remains, is chemotherapy less effective or more effective in dealing with hormonal influence? Since chemotherapy is used to bring about the apoptosis of cancer cells yet it doesn't seem to bring about the death of stem cells, it may be that complete removal of the ovaries is actually superior in some ways to chemotherapy, even though some amounts of hormones are produced in other areas of the body.

On a personal basis, I was not fully menopausal after completion of chemotherapy at age 52, but by symptoms was more fully menopausal after 3 months of tamoxifen that I took after having chemotherapy. (I have never had my ovaries removed.)