Jen,

You should have a care team assembled now that usually consists of a medical oncologist (who manages the bloodwork, the chemo, etc.), a radiation oncologist (who manages the radiation) and an otolaryngologist (the ENT, surgeon, etc.) plus a nutritionist and a social worker. This is pretty much standard for any major comprehensive cancer center. The medical oncologist (mine also goes by oncology hematologist) is like the primary care guy and orders tests, etc., in my case. Each one has at least a nurse (or staff of them) at their side who should be very familiar with your case. Many comprehensive cancer centers also have a well-stocked library at your disposal if you ask.

Your job is to learn what you can from who you can when you need to. The trick is to put all thos conditions together at just the right time. As a general rule, if they are in your face and you do not understand, do not let them out of your site until you do. Busy or not, this is your life. I will have to remember what Sheldon (ssax) says about asking politely the first time. I never really thought about that! eek I am just kidding, of course.

If you are curious about staging co the the National Comprehensive Cancer Network website and read about it. IF you really want to know your "odds", ignore the staging. Some of us are just eager to learn new things to aid in us taking as much control through this process as we can.

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