Hi Bill,

First I want you to know I am really sorry you are having to go through this. I am glad you have found this site as it is full of useful information and great support to help you through this.

I had a tumor slightly smaller than yours on the tongue with two lymph nodes showing metastatic cancer and my largest was about 3 cm. My diagnosis was done mostly from a PET/CT scan and an MRI as I was allergic to the CT contrast dye.

There are different views on the neck dissection for stage IV cancer, especially over the last five years. Even with the National Comprehensive Cancer Network comprehensive cancer centers some will do the neck dissection and some don't unless there is still cancer left after the radiation/chemo therapy or for a recurrence. If the radiation/chemo is done first, it may require less of the tongue removed because of the tumor shrinking or being totally eradicated. In my case, I had radiation/chemo and the tumor was completely destroyed. Statistically, doing the neck dissection has not significantly increased the five year survival rate.

Here is a link to the NCCN guidelines for you to review:
http://www.nccn.org/professionals/physician_gls/default.asp

I did not go to an NCCN member center but I did go to a comprehensive cancer center for treatment. I had my otolaryngologist consult with MD Anderson, an NCCN member center, and the treatment was exactly the same. Many if not all of the NCCN centers have a process that gives you an expedited second opinion with just the doctors reviewing scans, path reports, etc.

I hope this gives you a bit more info to help you make your decision. Of course, if there are any other questions, feel free to post them or email/private message anyone on the board. We have all traveled a similar road in many ways and are more than willing to help you through this...every stage of the way. It is not an easy road but here you will find it is a well-traveled road.

I have an Uncle, Aunt and two cousins living your way. We used to fish off of the Destin bridge long before SanDestin was ever a part of the horizon. My girlfriend in Junior High School was transfered to Eglin (her father was the base commander). I used to have many photos of the B-25 in Niceville but I don't know where they have gone to.

Welcome again.

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