I’m currently in the waiting period for a specific gene test for cancer risk. My father had an aggressive form of cancer that he was able to beat (knock on wood he’s 7 years cancer free) but it the longitudinal study he is in determined that he has a gene mutation that made him more likely to get cancer, and there is a 50% chance he passed it to his kids. We are all adults (30+) now and the company has offered to test us for free. I took them up on it, and am now waiting for my results.
My genetic counselor visit was a subpar experience including the counselor clearly getting my family’s rather extensive cancer history wrong, and down playing my risk significantly lower than my mammogram suggested and couldn’t explain to me why his number was so different.
I’m scared because I’m looking at somewhere between a 20-29% rate according to my obgyn l, and if I have this variant I am looking at 30% plus. I’ve read to much about this now and feel kind of in the wilderness right now mentally.
Has anyone else gone through this process? It’s not the outcome I’m even afraid of, but the waiting is doing me in.
Comments
The wait is the hardest part.
Just think about it. If you test positive for the gene, you have a higher chance of catching the cancer earlier. Your doctor can discuss preventative measures to mitigate the risks associated with the gene.
My mother underwent the gene test for BRCA. She only went to see if she had the gene or was a carrier. (She had already gone through breast cancer treatment at this point.) She just went for the test and forgot about it until she got the results. She tested negative for it.
Yes. My father has Lynch syndrome, which is potentially what you’re looking at? It’s got 50% inheritance, so my siblings and I each had a 50% chance of having it.
We had the counselling session, then the test, then a session where we got our results. We were all negative, we got lucky. Others in our family not so much, my dad’s siblings have passed it to some of their kids.
As a woman, it would have meant a hysterectomy around age 40. They recommend yearly colonoscopies, amongst some other screening.
If you don’t like the people you’re being tested through, and it comes back positive. Take those results and shop around to find a team you trust who can manage ongoing care and screening for you. I think you can view this is good news: knowing about a gene like this means you’ll access screening and early detection. Most cancer isn’t genetic – but genetic cancers in 2025 can be detected early. This is good.