I'm sorry to hear of the place where you now find yourself. While most people are not aware of it, perineurial invasion is a relatively common means for some cancers to spread, and some like ACC and MEC oral cancers it is the primary means. That yours is starting to move forward in your head vs posteriorly towards your base of skull is actually a good thing, as it is more readily addressable, and ultimately less dangerous to your life. That does not mean that after you successfully deal with this, you are done. You will always have to be on regular recalls and scans to ensure that given the nature of your cancer that is caught early, if this happening again.

I'm big on second opinions. But time is not your friend with perineurial invasion. So you will have to weight the delays in getting a second institutions opinion about all this. UCSF is one of the best head and neck cancer facilities in the US, and in general patients that I have dealt with over the years treated there would agree. I assume that the statement that this is not operable came from a multidisciplinary tumor board and not a singular individual. Also that any scans or imaging that you have had done confirm this unidirectional progression of it, and there is not more unstated in other locations.

I want to qualify the next part by saying I'm not a doctor, though I'm more experienced in the head and neck surgical arena than most people, and I have interacted with hundreds of oral cancer patients over the years and been involved in watching their case presentations, solutions and outcomes. So the caveat is that I am offering you comments based on those things. There is much also about your situation that is obviously not revealed in your post.

Stanford is in your backyard. If you could get into them with your current imaging and doctors notes for a second opinion, I would be in favor of it. If it could happen quickly. They often seem to lean towards surgery, and if it is only located when you have stated, that would be a starting place to make the secondary parts of treatment have to deal with less. But my guess is that metric has already been considered by UCSF given who they are.

Immune therapies are increasingly part of the armamentarioum that institutions are bringing into play when more radiation is not possible, and surgery would be too invasive, or the likelihood of irradiation unlikely to be successful. There are different types and each has a mechanism of action that is different from the others. We are only now starting to use some of them in combinations. The ones that we have the most history, as short as it is, with are immune checkpoint inhibitors. You have likely seen these advertised on TV as Optivo from BMS, and Keytruda from Merck. Both are FDA approved. They target the PDL and PDL-1 pathways that your immune system uses, and essentially, in a too simple description of a very complex idea, they take down the natural barriers that the immune system has in place to not let it fully loose. I can expand on this with you if these are the types of immunotherapy they are thinking of. Immunotherapy is tolerated well by most people, though a few adverse events have been reported and they will disclose them all to you prior to moving forward with it. Some of them are scary, but the incidence rate of them actually occurring in people is very very small. All this said, if they have chosen this path for you they believe that you are a good candidate for it. That said while these monoclonal antibody drugs are a huge breakthrough in treatments, they do not work in everyone. Science is still sorting out the whys of who they work in and why. There are some basic tests that give them an idea if this is the right path for you, but they do not work in everyone that they are given to.

The world of immune therapy is full of ideas that are in limited use or in clinical trials. And until we know why and what they have chosen this for you I won't comment on all the other things that might be used. But know that there are other ideas, and in a percentage of the population that gets them they are very effective. Your question about what this entails varies with what they choose, but these are mostly given like chemotherapy.

Insurance coverage for the FDA approved ideas has been now mostly approved, though in some of these ideas you will find that the manufacturer who is still wanting to collect data on how their idea works in the general population, will pony up to pay for or co pay for the treatments.

You should ask them for specifics about what it is they want to give to you. You should be totally informed and that is the legal basis for them moving forward- your INFORMED consent, whether the idea is radiation or immunotherapy. Failure to do that is a legal issue. You should ask them everything that they can tell you about what it is they intend to do, and do so until you are sure you understand the risks and rewards, and what the whole idea is, not just "immunotherapy"

When you post back with some additional information, I would be happy to comment on it. I can also point you at a patient or two that are in or have had immune checkpoint inhibitors to talk to directly if that is the type they are considering for you. I wish you well in your next steps with this. Brian