David,

I am not sure why the PET scan wasn't used the first time. It is typically used to identify all cancer sites in the body, even though it may not identify micromets. It is also a very expensive test and insurance companies balk at the cost if overused. Radiation is used to kill all the cancer cells in the area even if they have not grown enough to be detected by the PET scan.

Seek out a second opinion. Not that it sounds like your medical team has given you bad advice, but rather for peace of mind. Seek out somewhere with a lot of oral cancer expertise (i.e. Comprehensive Cancer Center) and learn as much as you can before the next appointment. There is a lot of information on this website that could fill in some of the gaps you have. Be dilligent but do it soon so you can determine the best course of action for you.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023