I forgot to add - I'm not sure if your husband has had the surgery or not - but wanted to let you know that the recovery isn't that bad if you have the surgery and neck dissection. I can't comment if you have radiation - as I didn't have that - but most people on this board have and can tell you about that - But most people have no idea that I've ever had cancer. My speech is about 99% what it was before (only myself and my mom can tell a difference), I can eat almost everything I ate before (have a problem with crackers and really dry things due to dry mouth - they removed a couple of salivary glands during my surgery) and my scars are fading really well. Doctor said to use sunscreen on them (SPF of 30 or more) and use it every day - and it really faded the scars - not sure why - but something in there works. I had used Mederma for 3 months and not much improvement - switched to sunscreen with his recommendation and now - most people don't even notice I have a scar clear accross my neck.

So - hope that might ease some anxiety that I'm sure he's going through - I know I was really concerned about all of those issues.

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

Thanks everyone for your support and advice. I spoke with one of the members last night, Jerry, on the phone and that was very helpful. Just want to be prepared for everything we might be facing. Steve is having a hard time facing up to this disease right now so I am doing all of the leg work researching and finding a good support group such as yourselves, to get us as ready for the battle as we can. I don't mind though, because I would rather he save his strength for his treatments. Although I do think it is important to get him as mentally prepared as I can to know what he's up against. His appointment with the tumor board is Monday and the surgery is scheduled for next Thursday. Luckily his mom is now able to fly in to sit with me and be there for him when he wakes up. I was getting concerned that I might be waiting alone and that I might loose it. I talked to her last night and it was a real comfort to be able to express my feelings and concerns. I am going to be the long term caregiver though, so I'm sure I will be using the forum frequently to share my experiences and Steve's and to continue learning about all of your challenges. Thanks again.

Michelle

Hi Michelle,

Forgot to mention a few things last night on the phone. The scar from the neck dissection is not even noticeable now and most of the other members will tell you the same thing. The surgeons know how to hide the incision in the natural folds of the neck. Also, there is still some numbness in the chin and neck area. My tongue is slightly numb where the surgery was done. I hardly notice either anymore and it is a small price to pay.

Happy to hear that your mother-in-law will be with you during the surgery. The patient has it easy, they're asleep. You need that support and it's great that you will have it.

Jerry