Gary......thanks for your input. Where could I have access to those guidelines? I wish I were the type who could take my doctor's decisions blindly, but I come from a medical and scientific family, and I have a need to understand the science of what is going on with me.

You'll find the NCCN guidelines in the main part of the OCF site -- http://www.oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf . The main site also has a search function (toward the end of the list of links on the left side of the page).

August,
I'd second everyone who suggested getting a second opinion from a CCC (just to reassure yourself). My understanding is that today you can have your records and slides sent to a CCC and they'll tell you their opinion remotely.

I'm also in Texas and we got treatment at MD Anderson - if you need to know anything about care there, I'll be glad to share our experiences.

I can understand your apprehension. My husband wasn't given chemo - just radiation, and reading the stories here made me wonder why. I asked our surgical oncologist at MDA to explain the decision and she reasurred me by sharing the studies that supported the tumor board's decision to use radiation alone.

Debra

Hello.....Another surgery only here. I was stage II - like you - young (29) and non-smoker/non drinker. Mine was located on the tongue. My surgeon recommended against radiation and I second guessed him for a while and then went to one of the best RO's in the region who treats only H&N and lung cancers (which are all related since H&N easily spreads to the lungs). He agreed 100% with my surgeon in that Radiation was unneccesary in my case. Past of the reason was mine was well differentiated and another factor was my age.

Good luck to you. If you keep second guessing - if for nothing else - at least go see a RO for your own mental anguish. It really does help. You never know what they say. I went thinking that since he was an RO that he'd definitely have me do the rad - but they really do have your best interest in heart when they give you the recommendation. And, short of being able to predict the future - that's the best you can ask for.

Amy

I am a T2N0M0 who had radiation and chemo. I had it because my tumor thad some features to the pathology that indicated a higher risk than average of recurrence according to some research. Actually, the chemo was above and beyond what the NCCN guidelines recommend but I got the recommendation from a medical oncologist at a top CCC and I figured I was going to be feeling bad from the radiation anyway so why not do everything I could to beat the cancer into the ground....

The first treatment recommendation I got, from a local tumor board, was that I didn't need radiation but there was disagreement on that board and, interestingly, it was my ENT/surgeon who strongly pushed for me to have radation, the RO here at the time thought we should watch and wait. That's when I went for a second opinion at a CCC and I'm glad I did because they were quite clear that I needed radiation.

This seems to be a very gray area if you are Stage II and I think it would really help your peace of mind to get that second opinion from the best expert you can find.

Nelie

I have an appointment for tomorrow at M.D.Anderson for a second opinion on the appropriateness of my treatment so far.

I am seriously considering changing my care to MDA, since I have already decided that if I need more surgery, I will have it done there.

I wonder if they would take me as a patient at this point in my treatment..........Right now I just need surveillance.......and confidence.

I am back from my appointments at M.D.Anderson Cancer Center in Houston, where I went for some second opinions. I am happy to say that they concurred with all of my treatment plans so far. They said that, with clear surgical margins and a negative neck dissection, they would not have recommended radiation at this time. They also were impressed with my surgery (done at LSU in Shreveport.) They said that I could not have gotten a better outcome if they had done it. In fact, they were a little amazed that my surgeon was able to do the surgury totally within my mouth, without an external incision. Perhaps I should be thankful that I went where I did for my surgery, since otherwise I might have a facial scar that could have been avoided.

I did get a good checkup, using a fiberoptic viewer to look through my palatal defect, and using a different viewer and some numbing sprays to view down my throat, so I feel better about waiting to see my own surgeon, who had told me that I was doing well and didn't need to be seen for 6 months. (THAT made me nervous!) Now, it's just 2 1/2 months until I see him, but I have had a good checkup to help me to be calm until then.

Of course, going for second opinions AFTER treatment is still not the same. I still was not seen by a team who planned my treatment course before we began, so I feel that my treatment has been a bit scattered.

If any sort of recurrence is discovered down the line, I will need to decide whether or not to transfer my care to MDA. I think, having gone through the doubts that I have, even though I have obviously had good care, I will certainly get a second opinion and will most likely transer my care to Houston. If I have a recurrence, then the treatment will be much more complex, involving most likely radiation and chemo, and I will want to then be in a larger center's system.

I have go give credit to my surgeon. Even though I have had my doubts about some things, he obviously has given me superior surgical care, as evidenced by the comments of every single physician and dentist who has had occasion to look inside my mouth.

Advice for someone else on this board who was trying to decide about going to the larger center or not: I say yes. Certainly you should get an opinion from them, even though it takes a little time and effort. I was tormented by the thought that I might be "missing something" by not having gone to the larger center. I still would have felt more confident if I had started my treatment at the "top of the mountain.'

August,

I'm really glad to hear that the results of the second opinion were so good. It has to be reassuring to find out that you're not looking at any further recommended treatment at this point. Here's hoping that all your future checkups come back clear!

Cathy

Hi,

That's such great news. I know how worried you have been and now that worry should be relieved quite a bit. This confirmation of your surgeon's skills and follow-up plan from a great CCC like MDA, should help you sleep a lot better.

Keep the good news coming and let us know how your check-ups go.

Jerry

Thanks, everybody. And special thanks to you, Jerry, for your special interest and support. This illness can take a normally intelligent, rational, positive person and do funny things to them, can't it?!? I do feel better now. I will stay busy now until time to go back in December, at which time I should get a chest x-ray and some scans.

When I read what some of our friends on this board have endured, I realize how very fortunate I am to have had "only" a maxillectomy to deal with.

On that note...I don't read about many maxillectomies here. Brian, do you recall many posters with scc of the maxilla and hard palate? This surgery, including mine, usually requires an obturator afterward. I would love to "talk" with someone who has experienced this type of surgery.