It isn't about the money - it is about liability. If you got treated at Sloan, you would have a team. For an opinion you got a person. All the big centers have a "gate keeper" / evaluator that helps the people that come for opinions make decisions, but also evaluates if they could actually be helped by coming there. In many cases, that gatekeeper decides that your local treatment team's opinion - compared to what he/she knows of their own institution's protocols regarding similar cases, is similar enough to not warrant a move to their treatment facility. There is also a huge liability to recommending treatment protocols that are going to be administered by someone that you don't even know at another institution. That is why the reverse "have them contact me" approach.

The big institution systems have mandatory tumor boards, and no single doctor decides treatment, not only because it is best for the patient, but because it ensures that the institution, from a success standpoint, and a liability standpoint, is doing what they believe from multiple multidisciplinary experiences, to be the best possible treatment.

By the by, I am one of those people that traveled across the country to get treated because I didn't like the treatment plan, and reputation of my local facility. 8 weeks in another city, in an apartment. Since I was sleeping all the time from the radiation treatments beating me up, it passed rather quickly. The tough part was the next 5 months back at home after treatments when I was NED, but still suffering from the impacts of the treatments. Still on a PEG, still on morphine, still in pain, still emotionally fragile, still getting every bacterial and fungal infection that came around... those were the months when really needed my support team of friends.

My experience at Moffitt was entirely different. Moffitt was my 5th opinion. My ENT had called 2 days earlier to "try" and get me an appointment with his college friend. I was told that I didn't have an appointment but the doctor would try and fit me in once I got there. I first saw their Chief of Oral Surgery. After his videoed scope he told me he would like to put me under to try and find my Primary, then he sent me over to meet a RO who then sent me over to meet with a MO, all before I had decided to turn myself over to Moffitt. After a nearly full day there I decided that Moffitt was the place I wanted to be treated and they scheduled my exploratory for the very next day.

Hi, Charles,

You plug the holes by getting as much reliable information as you can, sorting it out, deciding on a course of treatment and committing to it. It's a lot to deal with, but many of us had to travel that path on our own. The point is, you are the most important person in this battle, and you have to decide you're worth fighting for. We do.

Yeah, it would be nice to get this disease when there is more research on treatment, or there is better treatment, or ... But we didn't. Take a deep breath. You'll make it, too.

Good luck.

Marlene

Our experience was similar to David's at Moffitt. The first day we were seen by a surgeon (daughter of the Chief) and the same RO that David saw. Both scoped, both explained that Bill's diagnosis was more advanced than our local ENT had indicated. But....after the tumor board met on our case, the RO called and gave his blessing for us to be treated locally as he was familiar with the RO and MO here. The local ENT has not been consulted again (he was a dufus.) We would have relocated to Tampa if they had suggested but we were happy to be able to stay home. We now return to Moffitt for checkups.

By the way, I know that a lot of CCC's have a facility on or near the campus run by the American Cancer Society (Hope Lodge) that provides housing for patients undergoing treatment. That would have been our choice had we stayed at Moffitt for treatment. Very nice accomodations, great support help. All at no charge.

Deb

(he was a dufus.)

Deb,

Don't hold back now...how do you really feel! lol

Oh David...I could say so much more. He was referred by our PCP reluctantly because of insurance issues/network, etc. PCP told us he could do the initial workup and biopsy without too much problems. He was the worst communicator I have ever dealt with..waited till we were in the exam room and with us to read the pathology reports and stand there saying nothing for about 8 minutes while we were sweating bullets about the results. He was just awful. Decided right then and there that we were going somewhere else. I took our slides and the pathology report and headed north to Tampa. We never heard from him again..no one called asking how we were. So glad we made the decision to seek another opinion. He was just a fluke but I feel sorry for anyone using him. Our MO and RO here were wonderful.

Deb

Decided to use the whole kitchen sink. Met with my MO at Wilmont for the first time he even showed me the logarithm from national Comprehensive cancer network (NCCN) google it; decided that cispaltin with chemo is the better bet! Now my nursing mind is working in overtime because after my 1st dose yesterday I was thinking if I make it through 2 doses why notlower the 3rd dose if they didn't think I needed it in the 1st place. I know I'm crazy; but you have to admit it is a rationale thought!

cisplatin: 206mg x 1 every 3 weeks; thinking abou tlowering dosage on week 3.
Radiaition IMRT via TOMO 57 gry back of through; 65 gry right side of neck; they want to do left side but Roswell and my ENT disagree!

Be careful with the larger doses of Cis as it can cause permanent hearing loss. If you experience any "ringing" in your ears tell your MO ASAP. Nothing can be done about what's already in your system but they usually switch you over to Carboplatin for any remaining treatments.

Never heard of reducing the quantity for the 3rd bag in a large series treatment but some have gone with smaller quantities once a week for 6 weeks.

I was left with a left ear that is almost useless and it keeps getting worse. It does help keep the sides of my head separated tho. Alive and smiling but missing many things.

Dianne and Charles I am Annette and my Dad is currently undergoing tx at Lipson for recurrent SCC of buccal mucosa now stage 4 . My Dad is also happy with his team. He esp is fond of his radiation oncologist. Charles he is getting Rad and round 2 of cisplatin and has tolerated it very well. Just tired. I live in MS but I am one of his caregivers along with my aunt from Boston and sister who lives in Webster. I wish both of you the best. I'll be up again next week we may run into each other. Hang in there be strong.