BRCA testing?

[mackmama]

I recently found out that a grandparent died of ovarian cancer. I mentioned it to my GYN at my last appointment who told me I should get tested for the BRCA gene and that, if it was positive, she would recommend removal of fallopian tubes and ovaries. I was shocked. I ignorantly thought BRCA only applied for those with breast cancer in their families (of which we have none). I now know that's not true - but the preventative surgery still threw me. I have enough going on in my life that I kind of want to ostrich - but that then feels pretty irresponsible. I chose not to get the test at the moment since I was awaiting some other medical news and could only take so much.

Anyway - would you/have you gotten the BRCA gene testing and, if it's positive, would you have preventative surgery?

[AngB]

I am lucky not to have a family history of breast or any gyn cancers.

Being a sonographer though, I would definitely absolutely have my ovaries removed if I had a family history of ovarian cancer, probably even without BRCA testing if I could find a doctor to do it and get insurance to cover it. Ovarian cancer is so deadly because the symptoms are really vague until it's too late. I personally would much rather have my ovaries just out then worry about it.

Breast cancer, maybe not, I would probably go with the BRCA testing.

[mackmama]

I am lucky not to have a family history of breast or any gyn cancers.

Being a sonographer though, I would definitely absolutely have my ovaries removed if I had a family history of ovarian cancer, probably even without BRCA testing if I could find a doctor to do it and get insurance to cover it. Ovarian cancer is so deadly because the symptoms are really vague until it's too late. I personally would much rather have my ovaries just out then worry about it.

Breast cancer, maybe not, I would probably go with the BRCA testing.

Yikes what a sobering response!

[AngB]

Yikes what a sobering response!

Sorry, the 5 year relative survival rate is around 45% which would definitely stress me out with a family history. (It is mostly so low because it's usually diagnosed late.) I have had patients that are even in their 70's and 80's with strong family histories of ovarian cancer that come in yearly for an ultrasound. Personally, even as someone who has had plenty of transvaginal ultrasounds as an infertility patient and over the course of now 6 pregnancies (eek), for me, I would rather just have them out then mess with all of that. That said, it doesn't need to be done immediately or anything, but in the meantime I would request yearly ultrasounds because that's a lot more accurate then just having an ob/gyn feel your ovaries, while not exposing you to the radiation,etc. of CT's.

[mackmama]

Thanks for the tip re ultrasounds! Would an ultrasound show early stages?

[twowhat?]

Thanks for the tip re ultrasounds! Would an ultrasound show early stages?

Ultrasounds have not been shown to improve outcomes for ovarian cancer. Some doctors will use it in conjunction with other tools (like blood tumor markers and making sure patients are aware of potential symptoms) to monitor high risk patients, but the data doesn't conclusively say that this is helpful. Therefore, ultrasounds are NOT recommended as a routine screening tool. If you're high risk though, I'd discuss with your doctor about how they'd like to monitor you.

The typical recommendation is that if you have 2 or more first-degree relatives with ovarian cancer, you have a higher risk, which you can reduce with preventative surgery. BRCA testing...only about 15-20% of people who have ovarian cancer have a BRCA gene mutation. So I would base my decision more on family history than on BRCA for ovarian cancer (for breast it's different).

[o_mom]

Please see a genetic counselor before doing any tests. They can assess your history and help with a testing strategy that makes the most sense for your situation. It may be that having another relative tested can give you better information.

[AngB]

Thanks for the tip re ultrasounds! Would an ultrasound show early stages?

In most cases, yes. Ultrasound can see follicles as small as 4-5 mm.

We are seeing more and more doctors send higher risk patients yearly. I wouldn't be surprised if it does become a recommendation. The biggest reason it's not perfect is that most of the time we do find follicles/cysts that are normal (technically each time you ovulate, the egg comes from a cyst), but that doesn't mean it would miss something that was suspicious.
https://www.google.com/amp/s/amp.cancer.org/cancer/ovarian-cancer/detection-diagnosis-staging/detection.html