A few weeks ago, I headed over to my cancer center's geneticist to visit with her.
I had read, a while ago, that there was possibly more genetic testing in regards to breast cancer.
When I was diagnosed, I was tested for BRCA1 and BRCA2. To everyone's amazement (given the family history), it came back negative.
When I read there was more genetic testing that could be done, I thought I should do it. Then dragged my feet. I want to know if there is a genetic component. And yet, there's a small part of me that doesn't want to know.
If there is, it could mean I gave that same mutation to my daughters. Or my son. It could mean I am also high risk for a second cancer, or even a third cancer, or some other issue. It could mean more doctor's appointments, more tests. It could mean more anxiety, more worrying.
At the end of the day though, I want to know. Because it could also mean proactive treatments, extra monitoring to catch things before they become bigger issues (though, as I've said before, early detection isn't a cure all). It's more information, more knowledge.
I can't fathom how this is a bad thing.
So I went in a few weeks ago. I met with the counselor. I learned I was eligible to try to get this done. So that day, I went ahead and had my blood drawn. I signed all the papers, took all the information stuff home, watched her pack it up and place it in the mail pile to go to the company.
At that point, it was time to hold our breath to see if the genetics company and insurance company could work out how it would get covered. Given that this panel of tests isn't exactly a minor expense, we weren't quite sure how this would all work out, but somehow it did. The genetics company had to call us if the test expense would be above $100 out of pocket for us. We were told we'd be notified in a week. No call has come though.
Now it's another waiting game. The actual tests are 6-8 weeks to get results. I'd like to hope we're close to 6 weeks and not 8 weeks. But I also know it will be whatever it is. I can't control it. I will patiently wait for the counselor to call me back. Depending on the actual results, one of my doctors (who will also get a copy of the report) may be calling me as well.
I won't be mailed a copy of the results though. I'll have to get a copy from the genetic counselor (or doctor). I guess they don't want you to see you have some weird mutation and freak out? It's good though. I'm sure it will be a lot to digest, even if it shows there is nothing there at all (because then what caused it?). If it shows something that could have repercussions, the counselor will also go over what additional medical things I should be doing ... scans, tests, etc.
I was given a lot of information that day. I came home and promptly filed it all away without reading it. They are testing 19 DNA points. 19. I figured why learn about 19 mutations, what each one means, and start to fret about it before knowing if I even needed to learn about it. Once we know, I'll tackle it all.
In the meantime, I'm waiting. And I'm actually waiting patiently. Summer has been busy so far and that's been a big help in passing the time! But still. I'm waiting. Wondering if this will show something or not.
Has anyone else done more than BRCA testing? Did you think it was worth it? I'm so curious. No one else I've talked to has had this done, and yet, I know somewhere out there other people have! So, if you have, can you share in the comments? Thanks!