Matt: On Friday afternoon (1/31/2020) we met with the oncologist for the first time. The doctor gave us the results of DNA testing. I recalled the one-pager that the social worker gave me at the radiology meeting and wondered if the cancer had some of the common mutations like EGFR, or PDL-1. The oncologist got right down to it, ‘You have a SET-D2 mutation and I don’t have a pill for that.’
The oncologist unpacked what that meant: a SET-D2 mutation is not common and it is also unknown what, if any, effect it has on cancer growth. Even though she did not have the RNA testing completed on the cancer cells, the treatment recommendation was for gamma knife radiation for brain tumors and several rounds of the kind of chemo that would make me feel really lousy plus a couple other supports: immunotherapy and another maintenance chemo for lung and liver tumors.
I directly asked the oncologist if she thought anything in the RNA tests would alter the treatment plan. She confidently responded, “no, it won’t.” I was now at a cross-roads, do I take the conventional treatment, or pursue other alternatives? I was still thinking of questions when I was sent to the front desk to schedule infusions. There was no discussion of alternatives.
Matt & Annie - Journey 