 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | 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
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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