Honey... you need to call your dr. and talk to him or her. We got it all -mdoesn't begin to answer the questions you should have answered for your.

Firstly I hope you were treated at a CCC... if not this might be the time to make a change to a different ENT. You need to see an ENT who deals specifically with oral cancer on a regular basis. Other ENT's know what they know, but unless they're experienced with OC - then there's a good chance they're not well versed.

That said. There are a few questions you should ask.

I'm assuming by your post they only did the tongue surgery? That's usually the first line of treatment which is great (scary and painful but great) did they also do a neck dissection?

This is something most experienced ENTs do. Often because this cancer can hide in the nodes microscopically and a few months later a node will pop up in your neck. So if you didn't have neck dissection then feel your neck daily (not obsessively just once a day) and get to know what is normal. Anything out of the normal you need to hightail it back to your ENT asap... no waiting.

You should know the size of the tumor removed, and your staging.
and you should have frequent follow ups particularly during the first year.

You also want to know the aggressiveness of it. (well differentiated, poorly differentiated)

I don't think that your personal treatment has really anything to do with you being on SSI - some specialists just have the - leave it to me - mentality. It's almost godlike in its prevalence - but the assumption that you should trust them completely and not ask questions is misleading. They are human, they make mistakes and miss stuff, and most importantly - while I am sure they have your best interest at heart when they have you in the room. They likely have scads of other patients that they feel the same way about. My point is knowledge is power. Only you or family can advocate for you so it's in your best interest to acquire a solid knowledge base.

So don't let him/her blow you off next time you see him. Simply start off with... I have some questions... and lay it out.
If they are reluctant to answer - unless they are tops in their field... I would find someone else.

This disease can be deadly.

hugs.