Thanks to all of you for your good thoughts. We are gearing up for Tuesday. I appreciate your comments so much. Special thanks to Sue, Christine, EzJim, Patty, PeteD, Markus, and anyone else I missed. The support is fantastic. I don't know if I can do this here, but I have a blog about my husband and it links to OCF.
http://ronswife.blogspot.com
Sorry if that's inappropriate to put it here. I hope to keep it updated as we go along.
My best to all of you,
Lori

An update: Ron's surgery on Sept. 30 took 9 long hours. The cancer was much larger than they thought. He ended up having an excision from his right cheek all the way back to the right tonsil. He was also expected to have his mandible replaced with his fibula, but in the end they did not use the bone, so they threw it away! They did have to take half of his mandible before they got clear margins. We are now still waiting for him to heal more before treatment again. He had a PET scan again 2 days ago. I am the kind of person that has to look at the scan as soon as he brings it home, and from what it looked like to me is he still has an area on his right cheek that reacted, along with a new spot like behind his bottom lip. I don't know if that's true, and I certainly hope I'm wrong. I know I shouldn't look at them, I just can't help myself. One thing that I am so angry about is the surgeon did NOT remove his right tonsil, even though it contained cancer cells. He simply "shaved" it until it was clear. Even Ron's Oncologist said that he would have been a hero if he had removed it. Can anyone explain why he wouldn't have taken it out? Ron ended up in the hospital for 11 days because of abdominal complications, but thankfully he didn't have to come home with the trach. If you check my blog you can read about the conversation I had with the surgeon in the hospital that made me so upset. Anyway, we go back to the Oncologist next Monday to discuss treatment. When we saw him last he was recommending 10-12 weeks of Erbitux. He still had not been able to convince the Radiation Oncologist to re-radiate. I hope by Monday he will have come around. Ron is so willing to fight this again with everything he has, so I think it's only fair that his team back him up. If not, we may have to go elsewhere for another opinion. It's not like he doesn't know what to expect. And we are both quite clear about his quitting point. When and if his scans show mets all over, then he will stop treatment and just ride his Harley and enjoy his remaining days, but this is not that time. Thanks to you all for your good wishes and great counsel.
Lori

Keep going until you get the answers you need. You sound very well informed and have a clear plan of action. I'm impressed!! I had radiation a 2nd time - but it was to the other side of my neck and mouth. I'm not a physician, but I do not understand the argument against re-radiation if it offers any hope at all. When I was diagnosed with a recurrance I told them "hit me with your best shot! Good luck.

Donna

Lori:

Thanks for the update. Glad to hear your husband is on the road to recovery, or maybe I should say partially finished with treatments. You mentioned getting a second opinion. To me, a second opinion is always a good idea. Best of luck with your upcoming appointments, hope they go as you want.

PET scans this early typically yield false positive results, I am almost surprised that they ordered one this soon - an MRI would have made more sense.

The partial tonsil resection thing doesn't make sense either?!?! I know it's a little late to ask this but is he being treated at a comprehensive cancer center?

Since he received IMRT he might be a candidate for re-irradiation if the cancer is not in the exact same spot. Also there has been some clinical trials with re-irradiation and the results have been promising. The side effects have been less severe then they anticipated.

Sorry it's been a while. We didn't get very good news from the PET/CT. There are now three new areas. Right parotid, right paralingual, and left Thyroid. Also there was uptake in the anal region, but the oncologist thinks that was artifact. He now has to have a Thyroid scan and a Colonoscopy before he can begin treatment. The waiting is agonizing for me--I feel like if within six weeks of the operation, the cancer is back with a vengence, how can they wait like this? We also don't even have an appointment yet for his port placement. Now we will be into December before chemo and radiation can start. I just get so angry at what I see as a broken system. When treatment does start, we know it will be Erbitux and IMRT again. We have not had our appointment with the RO yet, that is this Wednesday. Ron has it in his head that he does not want the PEG tube again. This worries me, but he knows what to expect this time, and I feel like it should be his decision. I guess if he is losing too much weight, it could be put in during treatment. Three years ago, he could afford to lose the 50-60 pounds he lost (and that was with a PEG tube). Now he really can't afford to lose that much.
Ron loves his team, but I am wondering if we need to at least get a second opinion. There is a cancer center in Madison, that's only about an hour from us. When we saw the oncologist for the PET results, he basically told Ron that there would be no more surgical options at all, we would just be treating from now on, and trying to buy a few years. He said that "If we're lucky, we will get another three years." That was hard to hear. I told the doctor that we would like to do some traveling, and asked him to let us know when we should start. He smiled and said probably after Ron is done with treatment and feeling better we should begin. I know that he has no crystal ball and Ron may do better than he thinks, but it scared me. I don't want to lose him, especially not that soon!

Have the majority of you gotten second opinions, or have you stuck with your original team? I don't know that Ron is even interested in a second opinion. I know that if I made an appointment somewhere else he would go, but would never think to do it on his own. Thanks for all your support.
Lori

I believe you can get a second opinion by "mail" by sending all his scans, reports, radiation history, etc., to someplace like M D Anderson or the center in Madison -- With the scans, he really doesn't need to be there unless someone wants to palpate him -- Not much to see...

That's what I would do before accepting a verdict like this -- If I did accept it without doing that first, I am sure my family and friends would give me no peace!

I would suggest considering MD Anderson in Houston. MDA is probably the finest CCC in the world with vast experience and treatment capabilities.

There web site has info regarding patient self referrals.

https://www2.mdanderson.org/sapp/contact/selfreferral/index.cfm

I can say nothing but good things about my referral and subsequent treatment at MDACC. A second opinion is always a good thing even if it simply confirms what your first team says...it helps eliminate the what ifs.

Susan

Don't listen too much about life expectancy. The amount of new drugs coming out every 6 months is something to think about. Some people have gone from one drug to the next drug for more than 3 years and are still going. What will it be like 3 years from now? Only better! Keep going. All the Best. Tom