She said calling them for an update about once a year is exactly what I should do. They are supposed to notify patients if there is any new information regarding VUS-es, but it's still good for me to call them, to make sure I don't fall through the cracks.
She said she already ran my genetic testing results through the database, and there was no new information to shed any more light on my VUS-es. Oh, well.
The reason I'm still interested is because if a VUS turned out to be a known mutation linked to breast or ovarian cancer, then I'd likely elect to get my ovaries out. But if it turned out to be a harmless variance, then I would feel better about not getting the surgery. As long as the mutations have "unknown significance," I'm on the fence.
The genetic counselor reminded me again that it's not recommended to make medical decisions based on VUS-es. She explained that really, there is no way to know which way the VUS might go, especially because I'm not white. The genetic database consists mostly of cancer patients in the U.S. who have opted for genetic testing, and most of those people are white, so the database doesn't even have a lot of data on variations in ethnic minorities.
While I had her on the phone, we updated her record of my family tree with information I learned over the last year. She suggested asking family members to get tested, especially my father and my aunt who is a breast cancer survivor; their testing results would provide a fuller picture of the hereditary genetics. Interestingly, she said they wouldn't even have to go in for a blood test; the hospital can send them saliva kits, and they'd just have to mail back the samples.
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