My husband's ENT had a head/neck cancer herself as a young woman and had aggressive radiation treatment at Hopkins. That was about 15 or more years ago, she is fine now though has some trismus and had to have some jaw reconstruction as the radiation of the day was not very precise.

They did not have PEGs in those days so it was "swallow or die" -- she gargled liquid lidocaine and swallowed, albeit with tears (she says).

When she diagnosed Barry's cancer, she was extremely insistent that -- no matter what the other doctors might say -- he MUST swallow throughout as she was currently monitoring patents treated elsewhere who could not (in her words) "swallow their own spit" two years out. These words hit home, Barry figured if this woman could get through this as a college student, he could as well. Of course he had the benefit of better pain meds and he did get a PEG as a safety precaution (though he ended up not using it).

The folks at Hopkins sent him for a swallowing evaluation 6 weeks after end of treatment and it did reveal problems, despite his swallowing all the way through. They gave him exercises to do to strengthen his lingual muscles etc. and he did them religiously, in fact still does them a few times a week to avoid fibrosis.

I was interested that the doctors and nurses at Hopkins are insistent that the patient continue to swallow and will get on their case (as nicely as possible, of course) if they do not. The speech/swallowing therapist said that they were getting lots of strictures before they started being more proactive on this issue.

Gail