Hi everyone. New to OCF and happy to be here.

The first month, as anyone reading this knows, has been hell and we are just getting started. Dad is on the fence between IMRT chemorad centers: a top research hospital which will require daily city travel for the big 33 treatments -or- a local treatment (5 minutes from his home) "secondary" center with a radiologist/team he has met with and likes.

The (research) hospital's surgeon claimed a 40% cure statistic if chemorad treatment is sought at top research-based centers, but that % points drop when treatment occurs at the so called secondary centers. There is supposedly a recent study on this. Does anyone know the name of the study or can you point me to it as that doctor is out this week. Our local team would like to review the study, we have questions, and we need to make a decision and get started.

One thing I've learned during years of fighting cancer, a person is not a statistic. Trusting and liking your team is critical.

Nice to meet you and thanks in advance.

Caco

I wish I could help - but I dont know about the study... what I do know is that if it were me I would say to heck with concern about the travel... you go to the place that has the track record. A few hours of travel a day is well worth it if it means you have a better chance at walking away cured. good luck and many healing vibes to you.

Not sure of this paper you refer to BUT and here's my take...

Your Dad has Stage IV SCC and it's not HPV related. That responds less favorably to Tx than HPV+ SCC. It has already spread to his nodes. As far as oral SCC it doesn't get much worse. So IMHO I would insist on getting treated at the very best cancer center I could, regardless of distance or inconvenience.

Thanks, and although I agree on choosing the best cancer center, it is ultimately his choice. I'm urging (begging) him to make that choice on documented outcomes and not emotion, which is why I'm trying to find the study. He does not want to burden his family if the % outcome is not substantial...I am happy to carry him to treatment

You should never pick a center based on geography. People here have traveled out of state to get to the best of the best. You have one chance to beat this, and there aren't any mulligans�.

Some people are limited by insurance, money, and more. They get what they can, and having said that, while it is not always optimum, we get lots of calls every week at OCF from people with no health insurance and nowhere to go at all.

I didn't like my team at first, they didn't like me at the end since I was the patient with too many questions from hell. But I got to see the best of the best and that was all that mattered to me as a stage four patient. I'm here today because of them.

It isn't just about the best equipment, (40% of cancer centers in the US do not even own an IMRT capable machine, let alone someone that is up to speed on how to use it) the latest information, but they have not just read about the complications you are going to have (and everyone has them), or treated them a few times - they see those bumps in the road, things that go bump in the night EVERY DAY.

When the world is turning to crap and treatments are not working, they are the institutions that have access to the clinical trial drugs and protocols when everything else has failed. They have teams of people not just a few, all paid the highest salaries, recruited from around the country, and the competition to be picked up at at big institution is hot.

Convienience and nice personalities are great, after I am cancer free. In the meantime, I can live with a doctor who is not socially skilled, I can't live with one who isn't the sharpest pencil in the cup. JMHO.

Having said all that I AM NOT SAYING THAT THERE ARE NOT GREAT DOCTORS AT LOTS OF SMALL INSTITUTIONS IN THE US.

If you have a choice, go with the best. We had originally sought a second opinion from a CCC regarding treatment. We wanted to make sure that the treatment protocol was appropriate and to find out if there were less destructive treatments available. We also expected to have the cancer DX confirmed. In addition, I talked with staff that handles HN cancers at a major teaching university in our state to find out about proton therapy (not appropriate to treat J's original DX.)

The CCC reviewed the tests results and biopsy slides sent by the regional hospital's path department. Four pathologists (one of whom was the director of pathology for the CCC) agreed on the DX that it was a benign condition. Although their DX spared J from undergoing the majority of a very difficult treatment plan, it came a little late to prevent J from having a diagnostic tonsillectomy and four teeth pulled.

It is my thought that the pathologist at the regional hospital where J had his biopsy was not familiar with the most recent information regarding SCC HN. He was using a questionable factor on which to base his DX. Definitely, he was not the sharpest pencil. Neither was the RO at the same hospital who wanted to base staging and treatment on a PET scan. That he became angry that we were seeking a second opinion and that I asked questions about the pathology report was enough to make us want to run, not walk, to the nearest exit.

If at all possible, go with the CCC/research and teaching hospital. They've see it all, have the latest and greatest equipment and the newest possible clinical trials available. This is not a rehearsal, it is life or death, and IMHO a little inconvenience is worth it.
We made the 2 hr. drive every day for John's 35 IMRT appts. We could have stayed in a hotel, but he wanted to come home to familiar surroundings and sleep in his own bed.

Brian's advice is priceless: "Convienience and nice personalities are great, after I am cancer free. In the meantime, I can live with a doctor who is not socially skilled, I can't live with one who isn't the sharpest pencil in the cup. JMHO. "

Bonnie

thank you. i agree with the comments re going to the ccc vs regional, for all the reasons stated here. in 3 weeks ive become a reluctant but educated cg which is why i asked about the study that claims better outcomes.

here are the facts:
-ccc is top 10 and all that everyone has posted here--my choice but i am not the patient. ive requested family leave to make it happen.
-local regional cc is a well known teaching hosp, has imrt (new equip) with a RO who residencied and worked at 2 of top ccc's. she is a sharp pencil and humble enough to state that ccc sees more of what dad has and she supports his choice either way.
-today we see the ccc team to finalize their plan prior to my dad making his choice.
-will post his decision and the study shortly.

Don't take us wrong, we all think you are doing a great job and we all realize how tough it is to be a caregiver. We are just telling you what we would tell him directly and I might add we are being nicer to you than we probably would be in our posts with him.

Good luck in whatever decision he makes and remember this site will be here 24/7 for both of you.

Thanks David. Not taking you or others wrong at all. This is not about my feelings, I'm past the daily crying stage that immobilized my reasoning and decision making, and am now a warrior, taking this b*tch on with all we've got. Have called strangers who are now friends with the same disease advocating for the CCC, hands down. One even came to his home to talk with him urging him to go with the CCC vs local. Another "famous" patient has been email me regularly. So I am well aware of the decision and implications....but...

...My Dad and Mom are not where I am and are scared, deservedly so. I WANT him to go to CCC and will use every negotiating tactic I know today at the CCC to get him to stay with them for treatment. Will show him this thread if needed to help convince him.

Many thanks!