Thanks for all the positive info and suggestions. I have been reading alot of info. I do have a question for the radiologist when I meet with them in 1 week. If after the biopsies if a primary cannot be found, do you think they will use a more targeted IMRT or conventional to treat the whole area from my neck bone up?

i was 40 whan diagnosed in april. i had one lymphnode under my jaw and could not find primary until a petscan found large uptake in oropharynx.i had 30 imrt treatments to primary region and to the node. node did not desolve with rad. so i had a neck dissection one month ago.i also had a tonsilectomy before radiation as all my doctors thought this was the primary.i feel like i came through all this pretty well except for 15lbs. lighter(good thing)and a stiffneck for now.this is a great site for knowledge and support.i pray all will go well for you and your family.ihave a great wife and three small children that have really helped. you will find in the next months how many good people you know that really care about you.to answer your question they will not use imrt if they don't find the primary.i hope they can find it the imrt is very good therapy. good luck and stay positive. mo

My husband Barry was disgnosed in June with Stage IV tonsil and base of tongue SCC (tonsil was the primary) so hopefully they will find your primary when you have your biopsy. He was also a non-smoker, they said the cancer could be caused by exposure to another carcinogen, a genetic tendency, or virally-induced -- turned out to be the latter.

He had 33 radiation treatments with tomo-therapy (jazzed-up IMRT with even closer focus) plus 7 chemo treatments (carboplatin as a radiosensitizer) at Johns Hopkins and is now 3 weeks' out from treatment and doing pretty well, though we will not know for about another 5 weeks how successful the treatment was, when they will evaluate and do scans. No surgery other than a tonsillectomy (negative margins except BOT).

You will see a lot a variation on the forum as to treatment protocols, even with similar diagnoses. At Hopkins IMRT is used even with unknown primaries, however the treatment plan is different in that more areas are radiated. Everyone gets concurrent chemo, usually cisplatin or carboplatin, the latter sometimes with Taxol as adjunct.

Read on the OCF web site about various treatments and the potential side-effects and ask for clear answers as to how they will help ameliorate them (most cannot be avoided). My husband used amiphostine all the way through but many cannot; the average at Hopkins is apparently about 1/2 to 2/3 of the way through treatment before problems like rashes, lingering nausea etc. build up -- however even this reduced use is supposed to help with salivary function. His is fine, very little apparent effect. However throat is sore and still healing, so has eat soft things. He lost weight (everyone seems to) but mostly at end when he had two successive infections; he put on some weight before starting treatment, you might try as well. Barry never used his feeding tube, it actually failed (fell out) right near the end -- but it might have been helpful later when he had infections so it is a good idea to have one inserted.

Good luck, it is no walk in the park but you can do it!

Gail