"Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | 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
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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