Hi Marcia,
You call that wordy?
I never said that genetic counseling was a fad, or was quackery. What I did say, and strongly stand by, is that there are more than enough fads and quack recommendations found when researching cancer and its treatments.
I went to the site you linked at the top of your post and read the descriptions as to the how's and why's of genetic testing and to be honest, learned nothing much new. It seems like a well intentioned organization, and congratulations on your work there. What was it that you hoped would be utterly convincing?
Sue is going for the test, as insurance does cover it. When we questioned the counselor about what the test results would change for her treatment plan, we were told it would affect nothing, that the tests are not much of a predictor of recurrance, and without family history aren't totally reliable as predictors of other cancers (validating what I'd already learned by that point) ,but that "...People just like to know..." When asked why they like to know, the response was "... Sometimes they have ovaries removed, or another mastectomy..."
When I pointed out that she had just told me that testing positive for these genetic markers is not a very accurate way to predict either recurrance or "new" cancer, and it follows that to act in a preventative way based on this test is not entirely warranted, she repeated several times that "It's a good idea" to have the test.
Believe it or not, I asked her why
and the reason she gave?...
"Because it is."
Well, hard to argue (or even account for) that logic. I think my initial concerns are valid based on that conversation. I think it interesting that facilities who perform these tests always cite "substantial increase in risk" for BRCA carriers, but independant studies (as the one I cited earlier) do not find these increased risks
when there is no family history. Since insurance is going to pay the ride, and there is no actual harm done, there will be something to learn from this in the end. Everything has some value, not the least of which is an education.
We'll let you know what we hear. And yes... even though we are far from convinced, we still hope we test negative. Funny, right? I easily understand decisions for, and against, prophylactic measures, and judge no one else's decisions but our own. We ask the same in return.
Thank you for your help
Thank you for being here.