I've just been diagnosed with SCC of the right side of my tongue. It's well-differentiated, and superficial - not in the muscle yet. Both Dr's tell me that's very good news. (I'll post more particulars next time -it's late and I'm too tired to go look at the report - just got it yesterday.)

I had a sore place that came and went on my tongue for over a year, finally saw the dentist, who said it was leukoplakia, needed to be biopsied to rule out cancer, and sent me to an oral surgeon. The biopsy was done a week ago.

Yesterday the OS referred me to an ENT, and I was able to get in today. She said tongue cancer is "nasty" and needs to be treated aggressively, and recommended precautionary neck dissection on that side at the same time as the resection of the tongue. I understand the process of removing the growth on the tongue until she gets clear margins, not as clear about the Neck Dissection.

She said the neck dissection part (which she would have another surgeon in with her for) shouldn't be much trouble recovery-wise; did say I'd have a drain for 3 days, but may be able to go home the same day, or very probably the next morning. - That doesn't sound quite the same as some of the posts I've read so far. (Just found this site tonight)

She doesn't feel anything in my neck, but is going to do a PET scan, (I've realized from what I've been reading that she didn't say if it was just for the head and neck or for the whole body.) She said if nothing shows up in the lymph nodes I wouldn't need radiation.

One part I'm unsure of is that she is scheduling the surgery a week (or less) after the PET scan. I feel like that if anything shows up on the PET scan, that would change the treatment options, and I would want to check out a cancer center, etc.

I liked her, and she was very informative and answered all my questions and seemed great, but after seeing some of the posts, I am afraid she might have been downplaying some things. I will check her out, and consider going to other Dr.'s , just don't want to wait too long!

We've scheduled the PET for 2 wks from now and the surgery the following week. (she would have done the scan next week, but I'm leaving on a cruise in two days, and am going to do some more research during that time. She agreed that another week was reasonable to wait, and told me to rest and relax and be in good shape for when I get back and have surgery.

At this point, I feel very fortunate that the cancer is superficial and she feels that the removal won't cause any speech or swalling problems. (although it is about 3cm, which seems pretty large to me) I did well after the biopsy, so have a little bit of an idea what that recovery should be like, if all goes well.

At this point, I'm planning to go ahead with the PET scan and surgery as scheduled - then if any lymph nodes show anything, probably get some more opinions on further treatment.

Here are my basic questions:
1. I'd like more information from people who have had the neck dissection - it doesn't sound quite as easy a recovery as she indicated.

2. Is it reasonable that she isn't involving an oncologist at this point? She said unless any lymph nodes come back, we won't need to. Is that reasonable - to not do anything precautionary. (I'll be thrilled if that's the way it goes!)

3. Am I crazy if I don't get a 2nd opinion between the PET scan and the surgery? I'm in Central California, so could go to one of the major university hospitals if I should do that.
I'm especially thinking that if the PET scan does show something else, I should get some more opinions about treatment - but don't want to wait very long to get the thing removed from my tongue!


I'm really tired and may not be making much sense, but was so glad to find a site that wasn't all horror stories and seemed to have some controls and oversight.

Thanks to any of you who have advice or information.


BTW - I'm 55 and in good health otherwise - and never smoked and drank socially very seldomly!