Hi mmadison --

It's me again -- as you see, you will get some excellent advice from folks on this forum. The best overall is to acquaint yourself as quickly as possible with this disease (the OCF web site is one of the very best sources, also google for review articles which summarize current best thinking on oral cancers.)

You should go with Steve to all his consults and be prepared to take notes and to listen carefully, as he may not hear everything or may be too freaked out to absorb it. Try to stay calm and not be afriad to ask the hard questions. What will be the side effects? How do you plan to alleviate or reduce these? How extensive will the surgery be (it is probable he will have surgery to remove the tongue tumor, if it is lateral tongue -- whereas many CCCs do not do surgery on the base of tongue) and what support will I get afterwards re speech and swallowing (if necessary)? How many cases like this have you seen and what has been the outcome? and so forth...

If it is any encouragement, while up at Hopkins we met a number of lateral tongue patients -- they had had pre-radiation surgery, quite conservative to retain as much noral tissue as possible, followed by chemoradiation. Most had no other surgery (Hopkins does not do a lot of neck dissections now and Sloan-Kettering, considered #1 CCC, does none). They were all doing well in the speech/swallowing area.

It is too bad your insurance did not allow you to go to a top CCC when you were diagnosed -- to quote a friend who runs a prostate cancer web page, "where you are treated and by whom is probably as important as what is done." However if Steve's case is before a tumor board at a CCC, that should ensure a "team" approach to his case -- a tremendous benefit as coordinating all the players can be a nightmare.

You will have to be proactive and forceful, and also check that Steve is getting all his pre-treatment appointments in (if he's getting radiation, pre-treatment visit to dental oncologist to evaluate health of teeth, for example.) Make a chart and log in everything. I bought a big notebook, started on page 1 with date and "consult with Dr. ---" and we are still using it, all notes in date order. It allows you to go back to Dr. or nurse and say, " on such and such a date you said I should have this test -- what about it?"

We are off to Australia in two days for 3 weeks, a trip postponed from last year when Barry was diagnosed only 3 weeks before we were to leave. Well, this time we are really going! I will try and keep in touch with my email some, but probably not very often. But don't be reluctant to come back to this forum for help anytime you feel at a loss, or just want to vent...

Best luck, Gail