Question about prophylactic oophorectomy

[kscarlettmom]

I have a strong family history of breast cancer and have, in fact, had breast cancer myself.  My grandmother, mother and sister have all had cancer.  My mother and sister have had it twice, in one breast followed 15+ years later in the second breast.  16 years ago, I was diagnosed with the exact same type of breast cancer as my mother and sister (we don't know what type breast cancer my grandmother had).  I had a mastectomy, and due to family history, had the other breast removed prophylactically.  Last year my sister was diagnosed with cancer in her remaining breast and had a mastectomy.  At that time she underwent BRCA  testing and was positive for the BRCA 1 gene.  On the advise of her doctors, she had a prophylactic oophorectomy.  Now, I am trying to decide what I should do.  I am 56, so obviously don't need my ovaries and in fact have been post-menopausal since my chemotherapy 16 years ago. I am considering the oophorectomy and don't know if I should just have it done without the testing.   My question is this --- is it a "no brainer" that I have the BRCA 1 gene also, since we all had the exact same cancer (all pre-menapausal) or should I have the genetic testing?  My doctor feels they can get the surgery approved just based on my family and personal history.  In a way, testing seems an extra expense for what is probably a sure thing - but I'm just totally confused.  Is it fairly likely that, with my similar history, I will test positive as my sister did?  (My mother has passed away and never had the testing.) What seems to make the most sense?

[Plonanon]

I would recommend you visit www.facingourrisk.org, or FORCE, which is for people with BRCA mutations. When I was considering genetic testing, I found the site to be incredibly useful.

It is very likely that you have a BRCA mutation, but it is not beyond the realm of possibility that you don't. If your sister was tested, I believe that your test should not cost much, since they know which specific mutation to look for.

These decisions can be very complicated, and some people need to consider many factors in reaching a decision. Also, what is appropriate for one person is not necessarily appropriate for another. People have different life and family histories, different fears, different situations. Maybe you should take some time to learn more about the different aspects of this issue and come to a decision that is right for you.

Good luck.

[kscarlettmom]

Thanks for the replies.  I did fail to mention that I have no children.  I have an appointment with my oncology gynecologist on the 16th.  I will talk with her again about testing v. non-testing and what we need to do to get the surgery approved.  I am thinking about after the first of the year.
I'll keep y'all posted!

[Ramsay14]

I vote for you to have your ovaries removed.  You don't need them anymore and why take the risk of getting OvCa.  Get the testing done too, so you'll know for your children, but regardless of the results, get the ovaries out.

[hopeshell]

Hi,  I also think you should have your ovaries removed.  I would bet you are BRCA positive given than history and your sisters testing.  I think losing the ovaries is a negative for those who are not yet close to menopause, but, the side effects aren't the same for menopausal or post menopausal women.  I think your body will probably adjust without much issue and you will give yourself the best chances of avoiding ovca.  Although, you should still ask for regular checks (possibly ultrasounds).  I have a friend who had her ovaries removed and got primary peritoneal cancer which is basically ovca without the ovaries.  Best of luck to you!

[survivor_susie]

Hi,
I'd sure have an oophorectomy if it were me.  Wait.  It was me.  I was the fourth generation of women in my family to get breast cancer.  A year later, I was found to have ovarian and uterine cancers.  If I'd known of the connection when I had the mastectomy, I'd have had my ovaries removed too.  

Years ago, my cousin had an oophorectomy, too, which her insurance paid for because of our mutual family history.  So far, she's had no cancer, either.

You go, girl!  It's not a difficult surgery, either.
Best of luck to you.  

[jane65]

Hi,
I am so sorry to hear that you've already had to deal with breast cancer,  that in addition to what your female family members went through, had to be a very difficult time.

I have relapsed  OVCA and my oncologist recommended that I have BRCA testing done so that my children and grandchildren will have the medical information for their futures.

I tested positive for BRCA 2 and that has greatly raised my chance of breast cancer. My brother had prostate cancer, so it has to be genetic.

I would definitely advise you to have your ovaries removed, as you said, you don't need them any longer and it will put your mind at ease regarding OVCA in the future.

In 1983 I had a hysterectomy but my GYN left the one "healthy" ovary, and that's the one which became cancerous 2 1/2 years ago. If only.......

I hope this advice helped you,
Jane