My story is similar to your husbands, but a few more bumps in the road. I had SCC, stage 1 on my lateral tongue and had my initial surgery done locally. I was told they got it all, and no more treatment was needed. Well, I decided to go for a second opinion, found out the doctor at the small/local hospital “misread” by biopsy and there was cancer “at the margins”. Went for multiple opinions locally and 2 hospitals in Philadelphia, got various recommended from more surgery, radiation, combination or “watchful waiting”. Not being a patient person, I opted for radiation.

Then about 5 years later, I had another painful area on my tongue (same area) which turned out to be SCC again. Since I already had radiation, that was not an option and chemo wasn’t an option either. So I went for multiple opinions (locally and in Philadelphia), and had an appointment scheduled at Hopkins which had to be rescheduled because of a bad snow storm. I had already schedule major invasive surgery at the cancer center in Philadelphia by the time I was able to make it to Hopkins. The doctor I saw (ENT) was the head of the department, trains other surgeons both at Hopkins and around the world, and his approach was much more conservative plus he put me totally at ease., He felt surgery only was needed on my tongue but had me wait so as to run another PET scan in a few months (nothing showed in neck nodes with the 2nd PET), so all he did was minor surgery on my tongue (clear margins). A year later I had another issue (dysplasia) which was treated with minor surgery. Dates and details are listed in my signature below.

I would highly recommend Johns Hopkins for the surgery aspect or at least get another opinion there. If chemo and/or radiation is needed, that may be able to be done closer to home.

You can read more about my adventures with my recurrence by looking at the posts I created. Click on my “UserName” and you should be given some options - look for the option for “posts created” and look for the ones in 2010 and 2011. If you have any questions, just ask. Wishing you both the best!