I agree with everyone here in that a second opinion should be sought, preferably from a major cancer center. The more I research our disease, the more it becomes clear that a multi-disciplined approach provides the best chance for a long-term positive outcome. I would encourage you to read everything you can find on the Internet and in your library on the subject while cautioning you to take it with a grain of salt as it doesn't always make for pleasant reading. However, knowledge is power and feeling empowered is of the things that has helped me get through and continues to help with my experience of the disease.

As far as the fatigue goes, everyone is different. Your body and your psyche have been dealt a tremdous blow with the disease and treatment. My advise is if you feel tired, take a break and rest. Don't try and tough it out. Be generous is allowing your body the rest it needs to heal.

Welcome to the family.

-Brett

Eric,
You're not alone! Like Karen, I had radiation and chemo only and the radiation oncologist told me that many areas were targeted besides the specific tumor. I am almost a year out now - so far so good! I was very fortunate to have been treated at at UCSF where they take a very agressive approach based on much experience. They know where these things typically recur - at least they do at a comprehensice cancer center. That is Brian and many others, including myself, advocate going to one. There are very little margins for error. Doctor screw ups with this disease can cost you your life.

Brett, like Rosie said, stage III with no radiation - I would be running for a second opinion as fast as I could. And I would find a provider outside of the system you are currently in. To add a little to what Brian said, CT (and I believe MRI as well) can only detect mets down to 2-3 mm, PET to .7 cm. So that's why prophylactic radiation is a good idea in advanced cancer.

AzTarHeel...My neck dissection was done differently than most here. It was AFTER the radiation treatments not before. This was because I had the maximum exposure of my spinal column etc. to the radiation, and the cervical nodes were still suspicious. While surgeons don't particularly like to cut on radiated tissue (it gets gummy and hard to deal with) the safe thing was to get the rest of the suspected nodes out of me, along with the surrounding fatty tissues, just to be sure that radiation had done it's job. As it turns out they were all dead in biopsy, but I don't regret the decision today one bit. I know that they/I did everything in our bag of tricks, and as someone with a late stage cancer I was in my own words "circling the drain" when diagnosed. I wasn't in any position to make second guesses, or take conservative approaches. I think that I am here today instead of flushed down the drain, because we hit it with everything in the bag of trick right then. If I end up in recurrence, it will not be because we did a half assed job the first time around. It will be the luck of the draw, bad karmic debt, I was just too far along when we started and we missed some micro met somewhere else in my body, or the agent (likely HPV16/18) that started all this in my body is still around and will cause a similar event to occur again, or I have a genetic p53 defect that I can

Hi....

I too did not have surgery. I questioned my doctors about that decision and was told by the throat surgeon that I was not a candidate for surgery because they would have to remove too much tissue, that the tumor was too widespread. I often wonder if my chances of recurrance are higher because of this.

Khaja

My checkup is just two weeks away, and I'm trying to get all of my questions together this time. I am going to a cancer research center where my doctor is very reputable. Like I said earlier, everything happened so fast when I was finally diagnosed. Finding this web site has helped me. Thanks!! I am just trying to get some "power" with knowledge.

I have just shown my husband this forum, and we are hoping that some of you can share with us what questions we should ask upon my checkup.

Hi BBrasel,

My wife bought me a book named CANCER, 50 ESSENTIAL THINGS TO DO. Written by Greg Andersn.
You can buy it or use your library to get it.
It has all the questions you want to ask your doctors. It has info on diet, treatment options, etc. I haven't read the entire book but it contains a wealth of info for people who just don't know what to ask. Remember YOU have to be your own advocate. Good luck on your follow up.

Sincerly, Dan Bogan