Hello everyone,

My husband Tom had surgery Aug 29 to remove what was thought to be a brachial cleft cyst and a tonsil that looked suspicious. The frozen section in the op room turned up nothing, then two days later a call came, they found something. The tonsil is the primary, the cyst a tumor and the surgery, geared to not clear margins or remove additional lymph nodes, needs to be completed.
Yesterday we saw the tumor board at another hosp. our previous surgeon suggested we use and aftering listening to a little back and forth between the new surgeon and the radiologist we left the meeting a little confused. The surgeon seemed to not want to do the surgery and the radiologist said it has to be surgery or rad/chemo combo. So finally the surgeon said he would do surgery and talked about a modified radical followed by 6wk mon-fri radiation. A nurse friend of mine said that it seemed there was no "point person" for treatment. Like the med oncologist? I am so new at this it did not even dawn on me to say, "do we have a point person?".
Anybody here got input to treatment direction, and we were not offered the chemo route if surg/rad route are taken. Is that the usual?
Brian, We are glad you started this thing and I know you must repeat yourself a million times. Any place you have all your insight jotted down so that someone could read you and your partners insights?

My husband was also diagnosed in August with Stage IV Oropharyngeal cancer. T1, N2b, M0. He had radical neck disection and will start radiation 7 wks M-F along with Chemo (drug called Cisplantin)next week. The oncologist informed us that the Chemo helps to make the radiation more effective.

I had surgery and didn't have chemo with my radiation. I had microscopic cancer in one lymphnode and my doctors decided against chemo.

My husband Barry had Stage IV SCC with his right tonsil the primary, spread into the base of tongue and to two lymph nodes. His diagnosis was in late June of last year. He had a tonsillectomy (only) down to connective tissue but his ENT surgeon would not touch the base of tongue tumor, citing potential serious residual problems with swallowing and speech. Instead, tumor board (at Hopkins) recommended chemoradiation, which he had -- 7 x carboplatin and 33x treatments with the tomoTherapy IMRT machine, plus amifostine to protect salivary function -- by no means a walk in the park but he made it through in quite good shape, considering. He had a complete clinical response based on two PET/CT scans and extensive physical exams and his doctors did not recommend any further surgery (i.e. neck dissection). He is now almost a year out of treatment and is doing fine, can eat anything, we just got back from almost a month birdwatching in Australia, including long offroad outback drives with no issues.

During treatment his radiation oncologist (RO) was our major point person as he saw him or his oncology nurse 5x a week, but it was a true team effort and the RO consulted with Barry's medical oncologist (MO) a lot. We now see the ENT and MO more often than the RO, but someone in his team checks on him about every 4-6 weeks. In the second year the frequency of his check-ups will diminish a bit, but not much, as most recurrences occur in first two years and they want to be very careful.

Barry's cancer, like many which present first in the tonsil and occur in non-smokers, proved to be caused by human papilloma virus-16 (same virus implicated in most cervical cancers). He is entering a trial this fall for a new therapeutic vaccine which MAY, in years to come, become another weapon in our battle against this disease.

Gail

Thank you Jan, Gail, minniea,

We talked to our first doc and feel much better about the tumor boards plans. We should know by Tues a surgery date sometime within the next two weeks. The MO (I am getting the abrev. and lingo a little a day) should be one of the best docs there, we just did not get to meet him yet. So, do we take the longer drive to have the RO at the same place the MO is or do we use a closer faucility that is equally as good with equipment and also has fine RO's to save on time daily? That will be the next big decision. No mention of chemo yet, though I get the feeling anything is possible at this point. Gail, that trial sounds really promising for some time in the future. Any help and hope we can give our young folks so they don't have to go through this stuff.