Just to reaffirm some of the points here:
I got through the first time without a PEG and launched another round of the PEG wars here on the board with my staunch opposition to it so believe me when I say that you will spare yourself a lot of grief if you get a PEG.
Insist they test your tumor or biopsy for HPV, it will buy you peace of mind as so far no one on this 6000 plus board who tested positive for HPV has had a recurrence and posted about it. Only those of us without HPV seem to get BOT cancer a second time.
EAT, EAT, EAT now. Everyone loses too much weight, even with a PEG.
Finally, for the majority the Treatment does the trick and they do not get it back and go on to live the "new normal". So good luck and best wishes
charm

Mark,

Were you a tobacco user?

I wouldn't be to concerned about a ND right now as your Tx may very well take care of the nodal problem. I would even go so far as to get another opinion if your ENT still wants to do one post Tx.

What about the HPV?

Mark,

Very similar diagnosis here, and treatment very close, except they did my Neck Dissection first. Neck dissection was the easiest part of the whole process, really. I wanted them to throw the kitchen sink at this disease, and so far it has been successful. Would lesser treatment have provided the same result? Maybe. Am I willing to take that chance with my life? No.

I will present a counterpoint on the HPV issue. Today, there is no difference in the treatment afforded to HPV and non-HPV SCC. There likely will be in the future, but there isn't now. So, for me at least, whether it was HPV, my prior smoking or something else is irrelevant. Sure, if it turns out to be HPV+, the results are generally better, so that is reassuring. However, if it is not HPV+, that does not mean that a bad result is inevitable. Why add that stress if it makes no difference to your treatment?

I personally did not have a PEG, and made it through fine. Unfortunately, I have gained back every pound I lost during treatment. That is a very individual decision, however.

Best of luck, and keep posting.

I continually have discussions with my RO at Moffitt, who is highly regarded in his profession, about HPV and what it means to the Tx. While today most CCC's don't alter the Tx they do recognize HPV's different attributes when comparing it to HPV- SCC. Trotti is also working with many others to develop one or more trials that may lead to changing the Tx for HPV+ SCC but as you can imagine, it's not easy. The overall goal is to cure the patient with the minimal amount of damage both short term and long term. To that end Trotti thinks that when the trials are established the 3 things he hopes to include would be no chemo; eliminate ND's and perhaps less radiation. Certainly one aspect that may stand in their way is finding willing participants who may be putting their life in harms way.

Even 3 years ago and before Moffitt confirmed I was HPV+, their feeling was not to do unnecessary ND's, that the radiation/chemo would kill the cancer and if not, the surgery was always available post Tx. After I was confirmed HPV+, Trotti remarked to me that he was even more positive about their decision not to do the ND pre Tx.

Agreed it's a complicated issue but IMO one worth looking into before I would allow someone to open up my neck, pre or post Tx.

Welcome Mark, sorry you have to deal with this. Keep yourself buffed up nutritionally so you can heal and recover quicker. Lots of yogurt, shakes, smoothies. My husband had neck dissection first and then IMRT ,finished in 1/09. Surgery was tough but I think radiation was tougher to endure with more side effects. He had a PEG which psychologically he hated but I think it was instrumental in keeping him in nutritionally good shape. He couldn't tolerate all of the tube feeds and ended up switching over to ensure and my special potpourie of smoothies. still lost 35 lbs. His biggest complaint was all the mucous in his throat and he was constantly spitting it up every hour on the hour.
Good luck in the days ahead, it's not easy but it will get better.
Take all the help you can, rides to RO, food, any offers of help around the house, take it. I'll be thinking of you.

Thanks again to all the kind welcomes.

Started treatments yesterday, so feel at least I am in the "do" mode.

I discussed the feeding tube with my RO yesterday and I let him know I was warming up to the idea. He still wanted to wait a bit longer to make the call. Mostly as I have plenty of "reserves" right now. I'm a pretty big guy in both directions and because of a loving wife and the short vacation we just took I managed to gain back the 5 lbs. I'd lost since the biopsy. My wife laid in a whole larder full of soft and nutritious food based on the info we were given.

As to HPV, no, I still haven't asked and the doctors don't seem to even care. As stated above, the treatment plan isn't altered, so the value of another test is minimal. I was an off and on again smoker for 20 years but rarely smoked more than 10 cigs a day. I haven't smoked for 10 years which statistically would put me in the risk category of non-smokers. Ironically, none of my doctors have really been concerned with cause. I suppose if I was a heavy drinker and smoker then obviously behaviors would need to be treated. But I think I'm being put in the causation category of "bad luck" and lets get to treatment and take care of it.

[quote=davidcpa]Even 3 years ago and before Moffitt confirmed I was HPV+, their feeling was not to do unnecessary ND's, that the radiation/chemo would kill the cancer and if not, the surgery was always available post Tx.[/quote]
Glad you put this out here, Dave. My ENT at CTRC told me that they stopped the post NDs in cases like mine because more than 80 percent were coming up negative. And, with close monitoring, ND can be done post TX if a scan is questionnable. He also added that just five years ago the treatment would have been totally different and with technology moving as fast as it is, five years from now today's TX routine will be considered old. A very good reason to make sure your Doc is keeping up with his business.

Sort of like learning the new tax laws every year in your line of work, Dave.

Mark, my husband's feeding tube didn't get placed until he was in his third week of treatment, that seemed to be when he was really starting to experience side effects from radiation. His wgt also started to decrease that week. He was overwht to begin with. We were both in the fence about the PEG before this but at this point decided he would heal better with the extra nutrition.The RO wanted to put it in at this time as well before he got any weaker. My husband hated the tube but I felt better with it and didn't have to worry about dehydration, meds, and getting nutrition into him. Good luck with your treatments, eat as well as you can. They still want you to eat even with the tube
Stay on top of your skin care, not sure what they want you to apply to your neck and face to prevent burns.
Keep us posted.

I have to agree with Jeff about the neck dissection. It is the easiest part to go thru.And yes, theu found positive nodes which would have escaped detection like the ones in my mouth did after surgery.

hi i am the girlfriend of a cancer patient. he is 42 and they say he is now terminal.It started as a small sore under his tongue 2007.They removed his teeth then he had 27 rad treatments and the cancer came back under his tongue.so they did radical neck disection. and put flap off cheek in floor of mouth. 10 more rad treatments. about 6 mo later it metasises in jaw and bone they take his jaw out and put metal jaw in and took a flap from chest to cover,the flap failed. then they tried to streach skin to cover hole it kept coming apart.he had to walk around with head held down to try to help flap take. It didn't work.and took out the metal jaw and they made a bar on the outside of face so this time they take a chest flap to cover hole . it didn't work either, it died. so they removed flap from shoulder wasn,t working and they had to put back on shoulder. now the dr tries to lift skin from the bottom of neck to cover hole underneath chin and used skin graft from leg to cover his chest. it did not stay together either.went to see vascular dr said because cancer has spread in neck as a ct scan showed that he is not a candidate for surgery and is now terminal. he also has infection in neck and alot of swelling that keeps going up and down can these cause false images? he is on steroids and bendryl for swelling it helps, also on antibiotics.he takes alot of pain meds still not out of pain. cannot sleep at night has g tube he's on jevity. i am his only care taker i change his bandages 3 or 4 times aday. the neck hole seems to be deeper. we need options he has share of cost medicaid. can not get medicare until april of 2010. he does not have primary care dr does not have cancer dr has the malfacial surgent who tried to save his life out of the goodness of his heart. we are looking at getting kemo. now if we can find dr . i keep looking for alternatives.maybe if i keep the area clean and moist and the kemo shrinks the cancer they can reconstruct his face so he can have a good quality of life. I feel so bad for all he and i are going thru. and i love him very much i don,t want to lose him, he is too young. isn,t there something that we can do?