Marianne,

I'm glad you were able to find this site, but I'm sorry you needed to be in a position to have to look for it. Now that you're getting over a recurrence, you should not be "left to fend for yourself". From your post it sounds as though you may not have been treated at a major cancer center, and unfortunately this is the type of illness that very often needs the full expertise of head and neck cancer professionals -- not just a surgical solution. All too often, there are microscopic cancer cells outside the main tumor site that are not caught by surgery alone and can survive to cause more trouble down the road.

On the homepage of this site, under the "Other Resources" heading, you can find a list of NCI-designated cancer centers. If you haven't gotten the input of an oral cancer team (surgery, radiation, and chemo doctors), I would urge you to get to one of these that's reasonably close to you.

In a way I'm surprised that this recurrence is a "mystery" to your doctors (and that suggests to me that maybe they don't see enough oral cancers to provide what you need at this point). The fact is there are many people, including myself and lots of the posters here, who have gotten oral cancer without fitting the traditional "risk profile", and the head-and-neck cancer teams at the major hospitals are well aware of that.

There's also a great deal that you can read on this site (beyond just the forum) to familiarize yourself with oral cancer symptoms, treatments, nutrition issues, post-treatment care, and lots of other useful information on the subject.

Please keep us posted on how you're doing as you continue your recovery.

Cathy