Topic: Genetic testing
My Mom saw her oncologist yesterday. One of the things he said to my sisters who were with her is that if he were advocating for our family, he would suggest genetic testing for all since Mom and I have both been diagnosed with this rare cancer in the adenocarcinoma family. While Mom's diagnosis may not have been pathologically as specific as mine because she is 88 years old, the cancers are clearly in the same family. My oncologist and her oncologist have corresponded at least enough to each be aware of the other, but Mom's oncologist is winding down his practice preparing to retire. Specifically, he recommended looking for a gene marker 53 mutation. He cautioned, however, that genetic testing is expensive and he was not sure if insurance would cover it. In Mom's case, Hospice has been referred and I expect the family will soon have access to much more information in layman's terms. As it is, Mom far outlived the Dr's expectations. Her recent CT scan was compared to a scan from November of 2006, which was her initial diagnosis.
I did have genetic testing for BRCA 1 and 2, which I believe is for breast and ovarian cancer and that testing came back not showing genetic mutation. Because of family history, my insurance did pay for that. I am not scheduled to see my oncologist again for about a month because I am in remission. Is this genetic testing something I should talk to my doctor about first, or is there someone at a research hospital who is already looking into this and would be interested in my results? Any idea how to go about finding them? Would this testing advance information about the cancer or would it primarily support additional testing throughout my family? If the family link is of interest to a researcher, I suspect I can provide lots of family as I have 3 sisters, 4 brothers, 6 kids, and 1 grandson, plus we have lots of cousins, though I cannot speak for how many would be willing to submit blood for the genetic testing.
I have lots of questions but I'm not sure where to go with them.