Tower, I'll chime in with the mantra of get the best you can manage. Another one here who had to travel to a different location, in my case from Guangdong Province into Hong Kong. During the SARS epedimic no less at one stage. While the hospital I went to by iteslf isnt' a large cancer center, the cancer center there is affiliated with MSKCC and works in partnership with them. The Surgeon who did the operations was from a clinic that specializes in head and neck cancers in Vancouver, and the RAD oncologist previously worked for a hospital that specialized in head and neck cancers here in HK.

If there's a major cancer center on Barbados, check out their affiliations and possible willingness to work with a major center in getting together a treatment plan. Sometimes being in remote geographic locations require some imaginate and creative treatment options.

Bob

Dear Tower,

Like Dan and Gary, my husband's local ENT missed some big things. I truly think he meant well, but he simply had not seen enough cases of oral cancer to know all he should. We wasted valuable months with this one doctor. NO matter what Scott's symptoms, he managed to reassure us that everything was fine. I bet he saw Scott two dozen times that summer. At one point Scott's jaw/ear area was so swollen that he looked like he had mumps on one side. The ENT scratched his head and said it was merely something called "carotid dynia" (inflammation of the carotid artery) and sent us home. I called another doctor we were familiar with and got her out of church on a Sunday and explained our fears! She took me seriously and ordered a CT. She then told us to pick up the scans and take them to Scott's ENT to discuss the results (she would not tell us what she thought). We took those scan results to the ENT and he said, "Well, dammit, I don't know how to read these things; you'll just have to go to a different specialist. I've done all I can do." It was days later at the specialist's office that we learned there was a HUGE recurrence--a tumor the size of a small orange. I guess the local ENT was too ashamed to tell us how very wrong he had been.

Christine

Thanks to all for your support and wise comments.

As a result (and to the relief of my wife) I have just finished writing the oncologist in Toronto, asking him to accept me as a patient. Keep your fingers crossed for me that he agrees.

I will keep you all posted.

Best,
tower

Hi Tower,

Here's hoping the doctor in Toronto takes you in as a new patient. Being so far away from home during treatments is going to be very hard but just knowing you're getting the best possible care should be comforting. Hang in there - we're all pulling for you!

Hugs, Nancy

Tower,

Welcome and sorry you had to look for us. It sounds like you have received great suggestions and keep in mind you may have one shot at this so find the best possible course of action. I was a little surprised at your comment about "feeling like an imposter". Like it or not, you are a bona fide member of this club (for life) now. The only reason you have not gone through as much as many of us is that you found the wrong doctor at first. You have officially joined the "club nobody wants to join".

With the disease spreading to your lymph nodes, your cancer would most likely be staged as a stage III or stage IV cancer. I am not surprised that you have not had the formal workup yet but I would see this as an indication that you need to seek out someone that specializes in Head and Neck Cancer to diagnose your cancer properly and develop a sound strategy to beat this cancer.

Spend some time learning all you can between doctor visits and do not let the doctors "calm you down" until you have the answers you need and enough options to decide the best possible course of treatment.

Best wishes for you.

Ed

Hi Tower,
I remember Brian making a statement on here concerning the length of time from surgery to end of radiation, he quoted a time frame. I want to say it was 100 days. Brian, please correct me if I am wrong. Just a gentle push to get you moving towards radiation.
Take care,
Minnie

Hi Tower,

Just so you know that your cancer is not unique, I too had an occult primary with mets to one lymph node in the neck. I was treated with surgery, followed by 36 radiation treamtents and no chemo. At that time, 1997, my drs did not feel that chemo really boosted your chances much in H&N cancers. I was also told that sometimes the primary shows up during radiation and then they can treat that area more heavily. Naturally mine didn't.

My recollection on the to time start radiation was 6-8 weeks after surgery. I'd push to get it started as soon as possible. Takes a week or more to just get it set up. I assume you have had a CT scan of both the head/neck and the lungs? I would also push for a PET scan. Since you will be receiving general radiation from the tops of your ears to your armpits, make certain they give you some drug like Salagen to help preserve your saliva.

I'm glad you made the decision to go to Toronto. You only get to do this once and it needs to be done correctly. Hurry this dr along.

Tkae care,

Eileen

Tower, Don't know exactly what your options are, but University of Miami has an excellent center, Sylvester Cancer Center, which has specialists in head and neck cancer that treat hundreds of cases per year. They also have free housing during treatment which is located 50 steps from the radiation treatment center. Just a thought. As far as GP's go, mine recognized the tumor during an annual physical and started me on the path of treatment which saved my life. So some of them are good. Yours, apparently, among them. If I can assist with other information, email me separately and I can give you names and numbers.

Hello Tower, Dittos on the "best you can get" I will only hope you can get the folks in Toronto to move faster than the stories I have heard.

Forget the statistics you have heard, this cancer can be beat, just hit it hard and with everything in the book. It is not a cancer to under estimate.

I just wanted to correct something that Christine said. My ENT Dx'd it correctly within a matter of seconds, visually, long before I even had a biopsy report. It was the GP, oral surgeon and dentist who missed it and caused the biggest time delay.