Kat,

Ditto on all the suggestions from everybody but the bottom line is that if you do not feel comfortable with what the doctors are saying, seek out others that have significant experience with this disease and keep seeking out until you have some level of confidence you are doing what is best based on the information you gather.

I had a great doctor who has now moved on to Vanderbilt (Nashville) and I would be glad to help you get another opinion if you want.

You can go to www.nccn.org and see a list of all the National Comprehensive Cancer Network members. These are the "best of the best".

Keep your mind positive and don't dwell on anyone else's outcome until you have peace of mind with your own situation. There is not a standard that will always apply but the journey that is already rough enough will be easier with the right attitude.

Welcome to the neighborhood, by the way!

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