I was put in touch with a genetic counselor at Stanford Medical Center. She wanted to present the whole idea of testing, educate me on all the ramifications of it, and then let me make an informed decision. I liked her approach and felt this was a rock-solid way to have all my questions answered.
We began communicating by phone prior to the appointment. She wanted as thorough of medical info as possible on all of my family members. I contacted everyone and began nailing down causes and dates of death. I ordered death certificates and even walked the cemetery to confirm last names and dates.
I was armed with quite a load of family history. We had all pulled together and shared stories of who remembered what. It was fascinating. Several cousins recalled that my Grandma had had colon cancer, a fact my dad had no recollection of. The last piece of the family puzzle that the counselor needed was a list of the types of skin cancer my dad had experienced. Her exact words were, "Find out if he has had a cebaceous adenoma. It is quite rare. I'm sure he hasn't had it."
My dad's wife, Sue, contacted his doctor and got all the needed dates and types of cancer. I was floored when she reported back that my dad had a cebaceous adenoma in 2005. Not only that, his doctor reminded her that dad had the gene for cancer and had been told to be sure and let his son know.
Be sure and let his son know?? My dad had the smoking gun to my whole cancer mystery. He had already been casually told that he had the genetic make-up, lynch syndrome, that they were wanting to test me for. We were finally getting somewhere as to why I had two primary cancers in my body at the same time. It wasn't in the water – it was in the genes.
Genetic testing at this point was just a formality. With this latest revelation, the doctors were 99.9% sure I had lynch syndrome. When the lab results came back positive, I began the process of spreading the word to my brother and cousins. It all made sense. I had the gene for cancer and would now be watched like a hawk for the rest of my life.
(…to be continued…)