r/BRCA • u/DullBrick8271 • 4d ago

Question Prenventative sugery BRCA2

Hey!

I am 22f and BRCA2 positive. I haven’t had a consutation with a doctor yet, so I am asking you ladies. My mom has breast cancer at 54, and I know that I want to lower my risk as much as possible. Therefore, after I have all the children I want, I want to do the preventive sugeries, e.g., removing breast, ovaries and uterus(??) also what is up with hormone replacement therapy? I have heard about it, but not sure what it really means. I would be happy if fellow BRCA2 positive ladies shared what kind of preventative surgeries they have had/will have.

Thank you in advance for sharing!

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u/SouthbutnotSouthern 3d ago

You need to get plugged into a research hospital and review clinical guidelines. Currently prophylactic mastectomy can be considered at any time. Ovaries and tubes at age 40-45. There is NO recommendation to remove uterus at this time. Removing ovaries before 40 has concerns with increasing your morbidity and mortality beyond just leaving your ovaries in place - you could be actively worsening your health.

Generally everyone is supportive of HRT at this point. But hop on pubmed, cochrane reviews. Real, legitimate sources.

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u/Saunalovenest 4d ago

The preventative surgeries are pretty standard, but have a lot of variation based on preference on timing and reconstruction method. I had my mastectomy and reconstruction first, then I had my fallopian tubes removed, and I waited until 47 to have my ovaries out. Guidance is 45 for ovaries out, so I was behind the recommended timeline. They are studying if fallopian tube removal is enough for prevention and I hope this research will be available for you when it is time for surgery.

Hrt gives your body the hormones you lose when you take your ovaries out, but how you respond is variable. It can take time to get the doses right and it is no where near as straightforward as I expected. The surgery was not a huge thing, I decided to keep my uterus to try to not change more than I needed to. But I’m still working with my doctor to get the right set of hormones, and I’m over 5 months out from surgery. It takes time.

Once you have a consult you’ll get a whole set of options and timing. The genetic counseling meeting was overwhelming, but so informative.

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u/Consistent-Fig2162 3d ago

I’m taking part in the study to check if fallopian tube removal is enough. Happy to be part of it!

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u/SassyParsnip 1d ago

To everyone on this thread taking part of this study, thank you (coming from a 28 year old) from the bottom of my heart for doing it. <3

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u/Saunalovenest 2d ago

So cool! I participated too. I really hope they learn that you don’t need to remove ovaries longer term. The data wasn’t available when I hit 45, so finally had them taken out at 47.

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u/Consistent-Fig2162 2d ago

Yup. It’s great. I’m so glad I don’t have to go straight into menopause at 42. My surgeon said they’re confident removing the tubes will be sufficient. Here’s hoping the study will back this up

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u/Genavania 2d ago

Interesting. I had my tubes out after my last baby (C-section) would be amazing if I didn’t have to remove ovaries!

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u/Consistent-Fig2162 2d ago

Yeah really interesting. It’s gonna be a few years before the results are out though. Fingers crossed 🤞

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u/EmZee2022 3d ago

If your ovaries are yanked before natural menopause, you'll go into abrupt surgical menopause, which is not fun.. That's where HRT comes in.

I don't know about BRCA2, but with BRCA1, HRT can make your risk of breast cancer higher so is discouraged. Having the mastectomy first seems to make HRT safe, per my breast surgeon. Again, this is for BRCA1 and I don't know how much of that applies to BRCA2.

Definitely do all the lifestyle things to reduce your risk: weight, exercise. Those are good for anyone. If you do have kids, breastfeed them. a long as you can - I credit that with why I don't appear to have developed cancer yet, and I'm 66 because I sure didn't do the weight / exercise thing right....

I did get all my inner bits yanked this year. No cancer found. The first breast surgery is in about 2.5 weeks.