Hi, Tom --

Your brother is lucky to have you in his corner! His case sounds very similar to my husband's (see my signature below).

Once cancer was diagnosed, my husband got an appointment with a cancer specialist (an ENT) at Johns Hopkins -- he hadn't gone there initially because the first biopsy by an oral surgeon of a very small piece of his leukoplakia showed moderate dysplasia, not cancer, and I didn't know enough at that point to push for having the excisional biopsy done there. SCC in situ (small bit superficially invasive) wasn't diagnosed until the excisional biopsy, a month after the oral surgeon's biopsy.

The general ENT (not a cancer specialist) who did the excisional biopsy ordered a PET (I think; it may have been PET/CT) scan, which came back negative for any spread. He also was talking neck dissection, etc. The cancer specialist at Hopkins whom my husband saw for a second opinion got all the test results, biopsy reports and so on from the oral surgeon and the general ENT and also did his own examination. He said additional treatment wasn't necessary at that time and watched my husband very closely -- every six weeks or so for the first year. The time between appointments gradually stretched out, so by five years out he was being seen at Hopkins once a year.

My husband still gets thorough exams every six months, using a VELscope, at his dentist's office. In the seven years since diagnosis he has been referred a time or two to the oral surgeon (a specialist in oral pathology) out of an abundance of caution, with nothing untoward or suspicious being found.

Given the location of your brother's cancer, HPV+ is unlikely -- it's far more prevalent in base-of-tongue (BOT) cancers -- though if testing is offered, he might as well get it checked. My husband didn't, as testing wasn't routinely available in 2006 -- his was on his mobile tongue as well.

Your brother is in a great place if he's being seen at the University of Chicago, and a second opinion from MDA or MS-K certainly wouldn't hurt. Just be sure that wherever he gets his follow-up, it's with cancer specialists who see this all day, every day -- not a "general" ENT who spends most of his time taking out tonsils and putting in ear tubes.