Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Nelie,
I am really sorry to hear you have had so much to deal with. As I read your post what really stuck out is that you will be the first oral cancer patient receiving radiation. I remember taking my Japanese car that was sold under the Chrylser label (Conquest, aka Mitsubishi Starion). I worked out a deal to get cheaper parts and labor because I liked to autocross and the dealer in Savanah Missouri wanted to train a mechanic to work on this specific car. They only had to re-do about half of the repairs until they learned a bit more. Now, this may be a little different than your specific circumstances but my question to my ENT was tell me EXACTLY how many oral cancer patients you have had and specifically how many with base of tongue primaries. I also had MD Anderson review everything and felt I could choose either one because of the extensive experience at either facility. You may only get one opportunity to battle this beast and convenience, while important, may not be the best factor in choosing via the process of elimination. It sounds like you have already been identified as an "at risk" Stage II, whatever that means.
I wish you the best and hope you receive the absolute highest level of care possible. Fight this battle with all you have.
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
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