Thank you both for your responses. I agree that much of this makes no sense, and I am seriously considering driving to meet them at UVA next week in order to get more facts. It is very hard for me to help them when I am never sure if my sister understands or knows the full story. She is just very ill-equipped to handle this. I wish I did not live so far away although 6 hours is drivable, at least.

It has been difficult getting information about my BIL's case because, as I stated in a previous post, he and my sister have high school education only and have never used the internet. They are very unfamiliar with the medical jargon, so it has been quite an adjustment for them. They live in a very small town and have lived paycheck to paycheck for as long as they have been married (16 years).

I have printed loads of stuff from this forum and mailed it to them. I have talked to my sister by phone several times a week to help her understand some of the treatment options, medical jargon, and processes for getting things done (applying for Medicaid, preparing for doctor visits, liquid food ideas, etc).

She has a couple of other people supporting her, but basically, she is relying on those doctors at UVA to give them direction. They have no "primary care physician" or hometown doctor because for years they just avoided going to the doctor or the dentist since they had no insurance (which is how my BIL's cancer came to be so advanced). I know that sounds like they must have lived under a rock, but really, they are like so many Americans who just try to avoid getting sick, go to work and keep the kids in school and take care of the home.

This all started when BIL went to the local urgent care back in October because of a sore on his tongue and ear pain he'd had for apparently some time. That doctor sent him somewhere else for biopsy, which came back SCC of the tongue. Once his situation was assessed, it was determined that he should see Dr. Reibel at UVA. There, he had a CT and they were told his nodes looked clear. At least this is why my sister relayed to me. My information is only as good as what she tells me. Surgery was scheduled for mid-Jan. I don't know of any other tests that were performed up to this point.

He had at least 2/3 of his tongue removed and it appears that he will not have any further reconstruction, I assume, due to not having insurance. Post surgery pathology report indicated the margins of tongue tissue were clear but that one lymph node had ruptured and was cancerous.

They thought prior to surgery that there was no metastasis because the nodes looked clear on a CT scan. Now THAT doesn't make sense to me because my sister told me that her husband's neck was noticeably swollen beneath his ear before he went to urgent care back in October. That CT scan should have shown a tumor in the node (right?), so already there is some miscommunication.

Last evening when she called, she said that the plan was to now do chemo instead of radiation, but I have talked to her this morning to clarify, and she said it is possible they meant that radiation would be done later rather than not at all--so Brian, the plan probably is to do radiation after the chemo. She said Dr. Reibel did not mention chemo to them on Tuesday or prior to surgery. Now that this has entered the conversation and (to her) the doctors are indicating a sense of urgency, it is really freaking them out.

I did tell her last night when she called so distraught that I had actually expected they would do chemo and radiation because it is "standard" treatment, as you both have written. I also tried to explain to her very clearly what stage 3 means and how the chemo is the best option right now, and she does seem to understand this. She said her husband is not able to grasp it fully because he is refusing to hear that there is any hope. His mother died from cancer when he was a baby, so I think there are a lot of issues coming out here.

And Brian, I totally can appreciate what you have told me about your life/ego prior to cancer in more ways than I will share here, but regarding my BIL, he is a very handsome man who looks and sings like the country singer Tracy Lawrence--so yes, he has much to feel loss for including his identity as a young, vibrant male. He has always been a bit on the shy side, but a real charmer nonetheless and very proud of the houses he builds with his brother. I totally understand, as does my sister, that he is grieving the loss of his ability to communicate--to talk and to sing and to joke with his teenage son--among many, many other things. I know that once cancer comes into one's life, it is such a loss of innocence for there will (for some) never be another moment of total and pure contentment and feeling of being safe and secure because there is always that worry that the cancer is or will be back.

So while I get that he has a lot to be distraught over, it just seems so unfair that there is NO team of experts swooping in to help them--but to be fair, I realize it may be that my sister and her husband have not indicated how much support they need. I'm going to call patient services at UVA this morning on my sister's behalf to see what I can find out. I don't think anyone at UVA realizes how distressed they are.

Again, thank you Eric and Brian for your information and very detailed posts.