"I was tested due to age and family history, and I tested positive for a CHEK2 mutation. A nurse told me over the phone that I have a 50/50 chance of developing a cancer in my other breast. That's it. It will be 4 months until I can get an appointment with a genetic counselor, and I don't know if insurance will cover it. My docs know little about the mutation, and neither does anyone else, as far as I can tell. It doesn't change my treatment plan, and since I have cancer, I was already going to be in a high risk screening group.
"This has felt like the most useless and least responsible part of my breast cancer experience so far. If so little is known about these rare mutations, why are you telling me about them? The testing company seems to be exaggerating the risk, and I don't know why. My CHEK2 support group is full of of people getting prophylactic bilateral mastectomies. That's a huge surgery. Is there really just cause for it? It all feels very reckless to me, though I know for others it offers peace of mind. This is just my experience."
-- Okkate75, tested positive for the CHEK2 genetic mutation