I saw my radiation oncologist yesterday. He was very pleasant and spent over 2 hours with me

Dear Tower,
Your case seems to be fraught with uncertainty and complexity. I would suggest getting a third opinion to see if there can be some concensus. Given the time constraints that you mention, it might make sense to go to MD Anderson in Houston (or another comprehensive cancer center in the US) for quick turnaround on an additional opinion.
Generally, I would suggest the most aggressive treatment possible, as squamous cell carcinoma is an aggressive cancer (assuming your diagnosis is correct).
The need for IMRT radiation is something that is puzzling in this case. Since it is used to target a tumor site very specifically and to spare surrounding tissue, I don't understand why this would be the preferred method for you, if indeed there is an unknown primary. I'd think that a radiation technology which bombards the entire head/neck area more widely would be more appropriate given the lack of a precise target. If surgery isn't an option because of the fear of spread, I would think that IMRT radiation would raise the same concerns.
I'm not a health professional so this is conjecture on my part. I wish you all the best in pursuing your treatment options. - Sheldon

Tower,

I have some of the same questions/concerns as Sheldon. If your tumor is poorly differentiated, I don't see why IMRT would be a good option. (IMRT wasn't even available when I was treated, but my understanding is that if it had been, I probably wouldn't have been a candidate for it because my tumor was poorly differentiated.) I had approximately 7 weeks of head/neck radiation -- after partial glossectomy and neck dissection -- and have had some long-term loss of salivary function. However, I can live with the dry mouth issues, between doses of Salagen, Biotene products, and keeping supplies of water at hand.

If you get a confirmation that this is SCC, it seems to me that a "wait and watch" option could be a disaster, given the way this disease can spread. I hope your doctors can come up with a diagnosis and course of action that they (and you) can have confidence in. Please keep us posted as you go along.

Cathy

I still don't see that there is sufficient info for you to make a decision. You are left with all the options for every type, stage and location of cancer that we have all had. Radiation (both types), surgery, surgery followed by radiation and, not to be left out, the wait and see approach. I'm not trying to be glib here, but we could have told you these options last month when you first posted. As for the wait and see option - if you have an unknown issue, as many of us have had, you can monitor it. From what I see you have been diagnosed with cancer and something should be done. Right? I agree with Sheldon, get another opinion. Memorial Sloan Kettering would be a day trip from Toronto.

Glenn

Dear Tower-

Definitely a 3rd opinion, but quickly. My husband's poorly differentiated SCC tumor in the back of his throat turned into a very aggressive attack that required chem.\/rad treatment by the time decisions were made.

Dry mouth/ fatigue are difficult but he is cancer free now after 39 rads and a 9-week period of chem simultaneously.

We live in San Diego, but found an oncologist nurse who knew doctors at Sloan-Kettering for our 3rd opinion. They agreed with our 2nd opinion team - with whom we chose treatment.

Good luck!

Tower, I initially had an unknown primary as well. However, after a tonsilectomy, the primary was found in my right tonsil. Do you still have your tonsils? If you do, might want to do some biopsies of the tonsils to check them out.

If you end up needing IMRT rad, remember that Sylvester Cancer Center in the University of Miami hospital, has IMRT (2 machines) and I think that is close to your home in the islands. They also have a free stay-on-campus program during radiation and chemo. Might be something to consider if the primary site is found. I don't think IMRT is a good idea either unless the primary site is known. So hang in there, your still on my prayer list.

I agree with Sheldon that you don't sound like a good candiate for IMRT based on what you have told us. Another thing to consider is whether Canada will pay for your treatment in the US. My IMRT treatment cost well over $300,000.00US -and that from a public institution (UCSF).
I am certainly all for the second opinion at a CCC. The uncertainty needs to be dealt with.

Tower-
All I can add to the above posts is that time is an issue here. Please push on for another opinion as soon as possible and get started on treatment! You mentioned that there are "pretty devastating long term effects" from radiation but having done 7 weeks with chemo over 2 years ago the long term effects aren't that big of a deal!! Go for the gold and be as aggressive as you can be in fighting this beast! You are in my prayers! - Kris

Tower,

I was confused on a couple of things. Both doctors mentioned thyroglossal duct, assuming TGD is the same (form rad oncologist). From what you are saying they both believe it is a carcinoma in the TGD but only one believes it is squamous cell and the other believes "some" type of carcinoma? Is this the one versus ten documented cases?

There are several troubling things in your post. Both doctors believe you have a cancer that you believe is agressive; the capsule ruptured on initial removal; the primary site is not known. I am certainly not a doctor but just these alone would worry me enough to first seek another opinion as everyone suggests but also plan on surgery with some form of dissection and field radiation.

Although your doctors have presented you with a wait and see option, is this really what you want to do knowing how horrible this cancer can be. Waiting may make your decision easier and be more palatable for you right now but will most likely be an irreversible decision at some point that you won't know. Sounds like Russian Roulette with 5 bullets in the chamber instead of 1. You may hit the lucky empty chamber but who wants to take that chance?

Best wishes for a quick and thorough analysis and choice of the best possible treatment plan to beat the beast now.

Ed

Actually, statistically, your odds (of having a recurrence) are better than in Russian Roulette (and that with only one bullet in the chamber) if you get my drift. Unknown primary, AKA occult, would make me real nervous about the "watchful waiting" strategy.

I had the full boatload of radiation and today I am eating tortilla chips and In-and-Out burgers. The effects aren't always so devastating - at least not forever.

The main objective here is to survive the cancer. If you don't do that it won't make a damn bit of difference about the other problems.

And some of us did this without a feeding tube...