How can I find the best hospital for radiation...? Am so scared...he has THREE diffeent types of cancer...and now a recurrence of squamous cell. He is so so depressed.
Has anyone had radiation AFTER surgery?
Anyone BEFORE surgery...
Please help...
efab

efab,
I had radiation and chemo after surgery. I sent you an e-mail with my phone numbers. Please call me, I have some ideas.
Rob J

It sounds like your husband needs to be seen at a comprehensive cancer center, where doctors from many different specialties (radiation, chemotherapy, surgery, etc.) will work together to come up with a treatment plan. You say your husband has three different kinds of cancer, so coordination of treatment would be critical.

If travel time is a concern and you are in north Jersey, Memorial Sloan-Kettering in NYC is one of the premier such institutions in the world; if you are in south Jersey, check out Fox Chase Cancer Center in Philadelphia. Both are members of the National Comprehensive Cancer Network , an alliance of 20 leading cancer centers across the US. This network develops the oncology practice guidelines that represent the state-of-the-art treatment protocols.

The websites for each center (there are links from the NCCN website) should offer information about making an appointment for a second opinion.

All the best --
Leslie

Efab,

As suggested by others, I strong you pick a hospital that provides comprehesive oral cancer treatment. Sometimes it is worth it to travel far but he will get the best care. You also need the hospital that has dentists on staff as part of the cancer team (dental oncologist and maxillofacial prosthodontist). I was trained at MSKCC and I can tell you the Dental Service there is one of the best in the world. DP

My husband is being treated at Sloan.
We have confidence in the surgeon

I HAD RADIATION AND CHEMO BEFORE SURGERY. I WENT TO THE IRELAND CANCER CENTER. THEY MADE IT SOUND THAT RADIATION WAS A BREEZE. 8 MONTHS LATER I AM STILL ON A FEEDING TUBE. I HAD A SELECTIVE NECK DISECTION ON THE RIGHT SIDE. I HAD A PET SCAN THAT SHOWED A LITTLE CANCER ON THE LYMPNOD. MY JAW WOULD NOT OPEN ALL THE WAY I AM DOING EXERCISES NOW. MY DOCTOR DID NOT REALLY WANT TO DO SURGERY HE FIGURED THE CHEMO AND RADIATION WOULD TAKE CARE OF IT. IT DID NOT WANT TO MESS WITH MY TONGUE. WELL MY TONGUE LOOKS GOOD CANNOT STICK IT OUT ALL THE WAY GOOD LUCK THIS IS THE MOST TRYING TIME I HAVE HAD.

Robin had radiotherapy six weeks after his surgery,and he is having terrible problems with pain and lip numbness on the side where his secodandary tumour was removed.Now you've got me wondering because his jaw has started to swell up again.

Liz in the UK

Well, he's already at a premier CCC but you still need to have confidence in the team treating you. I can understand why you feel like you have to second guess the treatment plan under these circumstances.

I know someone who receieved radiation at the new Sloan facility in Baskin Ridge NJ who liked them very much. Jack had his done in Princeton and we liked that Dr - there were several Sloan patients receiving radiation there. Have you had a consult with the radiation oncology doctor at Sloan yet to form an opinion? Also are they talking about doing chemo with the radiation?
Regards JoAnne

I want to thank each of you that have responded to my emails...i wanted to write back sooner but we have been going back and forth to Sloan...from marlboro, nj.
just leaned from dr. who had to clear mike for surgery that operation will be 10.5 hrs.
threw us both...did not expect this.
we are speaking to plastic surgeon tomorrow....and on friday we speak to his surgeon who will fill in all the blanks.
sooo many questions.
Surgery is set for wed. may 30.
have no idea what the plastic surgeon is reconstructing...do know they will be using a 'flap.'
from internet learned oral cancer tends to come back...approx. 50% cases have recurrences...no one told us.
learning that we have to become VERY knowledgeable so we can double check drs.
i want to learn more about chemo...and CYOTHEAPY...although the surgeon only mentioned radiation as 'likely' thus far.
as for radiation...there are so many kinds...has anyone heard of 'GAMMA KNIFE'
also...if it came back second time...can it come back third?
thanks for all your help...this is going to be a long hard road. husband tried this site and it upset him too much...perhaps that will change.
G-d help us all...
efab

Dear Efab AND Hubby- You gotta stop and take some deep breaths here. And remember that everyone on this site has personal experience in what is happening to you and will help you along the way. #1. Please stop projecting to what might happen in the future because you can't control that. #2. Learn as much as you can about his proposed immediate treatment so you can ask intelligent questions and understand the answers. #3. Get your life organized so that you can be there during the process and fully understand what is going on to the best of your ability.As to this site upsetting your husband, here's a hint for you. When you find a post or a thread that is pertinant to what is happening with him in the present tense- print it and leave it lying around so he can pick it up and read it at his whim. You can also ask him if there is something he might want more info on and search that question and print it for him. My husband wouldn't touch a computer, but I printed 100's of pages of OCF material for him to read and he did at his own pace.Remember- initial diagnosis is panic time- then you switch gears to win the battle. Amy in the Ozarks

Dear Amy,
I appreciate your help...but I can't help feeling that making sure...by asking questions and getting 2nd opinions can and will impact what happens in the future.
printing relevant pages is a great idea...thank you.
as for getting organized... i am trying

I am sorry for your loss...efab

Efab,
Listen to AMy. She's a smart lady and knows what she's tlaking about.

I had radiation after surgery (mine was 17 hours...talk about being thrown for a loop!)

The "flap" they referred to is either a tissue- only or a tissue and bone transfer from one part of the body to another, in this case to the face and jaw.

Have they said anything about a possible mandible or palette involvement? This will dictate where the flap is taken from.

In my case, they removed 40% of my jaw. The flap came from my lower leg. They removed the fibula for use in rebuilding my jaw, however the tissue they removed didn't provide adequate bloodsupply for their needs. To get that, they did a second, tissue only flap from my forearm. This also necessitated some skin grafts, which to be honest were the worst part of the ENTIRE surgery.

Radiation most comonly used for Head and Neck cancers seems to be IMRT, which is highly precise. I've heard a bit about the gamma knife, but not a lot in this context.

Your husband sounds to be a lot like me. For the first couple of weeks after I was diagnosed, I couldn't even type in the word "cancer" on the computer without having an anxiety attack.

Once I did, I started to learn, and to develop the tools I needed to fight this beast. He will get there, just give him time
Wayne

Dea Wayne,
Hope you are recovering and coming back to yourself.
We met with the plastic surgeon who is the chief of staff for plastic surgery at sloan...dr. cordeiro...he explained about the flap and expects it to be soft tissue only.
He floored us when he told us about the extended time frame for recovery...and that he may or may not be able to speak again.
are you able to speak?
we meet with the surgeon tomorrow and will learn more. surgery is on the 30th.
problem is he doesn't believe what the drs say...he has had THREE totally different unrelated cancers in less than 3 years...and now a recurrence. i don't know how much more he can take.
efab

Efab

the recovery has been much longer than I expected it would be. I'm nearly a year post surgery and I can only go for about 4 or 5 hours without needing a rest.

I am able to talk, chew...everything. The surgical scars are fading really well..unless I point them out, people don't even notice them. I really feel for your husband. I can't imagine having 3 different cancers so close to one another. I understand him starting to lose faith but he has to work hard to keep his trust in his Doctors; they are his BEST chance of beating the Beast
Wayne