Halloween day 2003 my boyfriend of 5 years was Dx Stage IV (T2 N3 MO) SCC of right tonsil and tongue base. Don is a 51 year old who quit smoking 3 years ago on Thanksgiving Day. Avid golfer, papermill worker for 33 years. We optained 3 differant opinions before settling on IMRT/Chemo followed by surgery to remove lymph nodes on the right side. He's been doing great with the treatments. No Nausea. Complains about not being able to taste anything. Dryness not a problem yet, he's had 14 IMRTs and 3 chemos. He only gets chemo on Tuesdays and only about 1/3 the dose someone being TREATED with chemo gets. They tell us the chemo is only to help the radiation work better, not really to kill many cancer cell. The mass on the side of his neck really started shrinking over Christmas (WHAT A GIFT) But he's gone from 206lbs to 192lbs. He's blame it on quiting drinking??? But what brings me to this board tonight is because he is 100 miles away and I just got his medical records in the mail. (I have a release)There are things in there that I'm sure he hasn't been told or he would have told me. I was able to be with him through all the diagosis, 2nd and 3rd opinions up to 200 miles away and all the early consults. I've burned all my personal time and now, because of logistics, I can only go to a few treatments. The PET on 11/24 impression says all we knew about the neck cancer and 2) no additional sites of metastasis. Treatment started 12/9 and a CT on 12/8 says bilateral pulmonary nodules, the most worrisome are a 7mm nodulein the left lung, along the major fissure, and a 8mm nodule in the right lower lobe. These could represnt metastases given the patient's history END...???? What? We were told that it wouldn't spread that fast! Why didn't the DR. speak any of this to us? Why haven't they done another PET to be sure these are benign? I will be calling the Dr tomorrow. Right now I'm just numb and scared to say anything to Don! It also says there is paraseptal emphysema. The neck CT says there is cancer into the musculature of the tongue(it was just surface)also invasion of the anterior margin of the right sternocleidomastoid and possibly the right jugular vein! Also irreg platysmas and digastric muscle(whats that?)Now a couple level 2 nodes on the left side (with irreg enhancement)Yes the rug was pulled out from us 2 months ago, but 30 - 35 IMRTs/8 chemos and a much less radical surgery than one of the opinions(jaw split,salvage from thigh, learn to talk and swallow again etc.)Things were supose to be fine! Now I'm scared and alone til tomorrow. We were convinced our only fear was reoccurance and he's been sooo good. He now quit his 6 pack a day habit. NO BEER. We're still holding out hope that he will be able to golf again. He's a 8 handycap. Any golfer's out there? Is this a false hope? They said there's a nerve involved with the surgury and that he may need to get therapy to re-train the muscles. Not that golf is more important than life, but that was always so much a part of him, it breaks my heart to think. I don't want him to give up but I also don't want to give him false hopes. He's pretty optomistic and thats GREAT but how do I keep him from getting depressed when things aren't quite the same? This latest CT really has me scared but it was a day before treatment started. How long before they "peak" at the progress? PET, CT, or scope? I really need something to go on here. Any comments apreciated!