Hi all--this is the first time I've posted, but I am not new to this board nor, unfortunately, am I new to oral cancer. I was first diagnosed in May of 2009, and found this site and learned a lot from the posts here. At that time I had a choice of surgery or radiation, opted for surgery and had a partial glossectomy & neck dissection with nodes all clear. Two years later I had a biopsy that detected a microscopic cancer and had surgery once again.

A week ago I had laser surgery to remove some leukoplakia on the floor of the mouth & side of tongue. Unexpectedly, the pathology report from that surgery identified SCC at the same site as the 2nd occurrence (very back of lateral tongue on left side). I'm going in for a PET scan on Monday and will know more then about the staging & what treatment options I have. It seems I am likely to have radiation along with surgery and/or chemo. This is the third time I've had cancer in just over 4 years and it's freaking me out quite a bit. I'm trying to keep it together and am lucky to have good insurance and the opportunity to take some extended medical leave from my work. But I could use some wisdom from all of you who have been there.

So far I have stuck with the surgery route, have been very afraid to do radiation and chemo has not been an option up to this point. The surgeries I have had have not been particularly disabling to me. I have limited function in my tongue but can eat and speak relatively normally. Just can't stick out my tongue, eat an ice cream cone, etc. The neck dissection has caused lingering soreness/stiffness in the shoulder and neck but nothing unbearable. I know that radiation and/or chemo is going to be necessary this time and would like more input from those of you who've been through it. It seems more life-changing as far as sapping your strength, drying up the salivary glands, making it impossible to eat/drink for extended periods of time.

I have been with an HMO (Kaiser) so far, dealing primarily with an ENT surgeon, and have been satisfied with their treatment. This time I feel things are more serious and would like a second opinion. I know that most people on this board recommend going to a CCC, but my insurance does not cover that. I am looking into getting a second opinion from a CCC (for example, Johns Hopkins)--does anyone have experience with that or any of the other CCC's near to DC?

Also, I've seen a lot of advice here for people to eat a lot prior to when they have to have treatment. I was 50-60 lbs overweight and have lost about 25 of that. So I still have a healthy reserve and am wondering if that advice would apply to me.

Any advice you could give me would be greatly appreciated! I just want to do whatever I can to prevent yet another recurrence.

Thanks for reading,
QuinnZ