Hello jnjh,

Welcome to this site. You'll find a great deal of information here from people who have had experiences similar to your wife's.

You didn't mention what stage her initial tumor was, or how much of her tongue was removed -- that would be helpful for us to know. It sounds as though she has not been treated at a major cancer center, and if she hasn't, I would strongly urge that she get to one soon (there is a list of them elsewhere on this site, under Other Resources). This disease can be very aggressive, and in many cases it cannot be effectively treated single-handedly by an ENT.

To give you an example -- when my initial biopsy tested positive for cancer, my surgeon worked in coordination with a head and neck cancer team and did not undertake ANY surgery until he had full scan results and the input of the entire team as to how best to proceed. While the surgical team felt confident that they had clean margins, and there was no lymph node involvement, the tumor showed signs of aggressiveness that caused my doctors to proceed with radiation within a few weeks after surgery. I wondered at the time if they were going overboard with the treatment, but I can't argue with the long-term results, and from what I've learned on this site, it's clear that this disease is best treated early and comprehensively.

Cathy