I agree with Paul.
I know that appearance and level of functioning is a very important consideration of the team when deciding whether to offer treatment or not. I also think that they like to see that you have an active support person on your side.
Kris had a stroke when he was 12 and has a residual hemiparesis. He was interrogated as to his level of functioning. They were particularly concerned when offering chemo or not and he was tested quite extensively for limb/nerve functioning.
The Tumour Board also felt a lot like a conveyor belt. Being as how all the patients initially waited together in the waiting room. Then were sent enmasse down to X-ray for the dental Panorex X-rays. then we were all put in little consulting rooms and waited. We could see the others being led up the corridor when their turn came to be examined.
Boy was that examination room crowded. It seemed like every man and his dog was there. Waiting for a glimpse of the tumour. Wanting to get a look at Kris. Lots of questions about his general health and symptoms. Lots of the surgeons coming to look and feel his lymph nodes. The radiation guys getting in too. Then Bob the Dentist examining and saying what teeth needed to come out.
Then off we go for a coffee and come back in an hour or so. More waiting
Trepidation. Who will come to see us and tell us the verdict?
I felt we only got a very brief explanation of what treatment entailed, and what to expect. Really we had no idea and we just floundered our way through.
I do think that this could be done better. I think the Nurse specialists should come in after the Dr's and give a much better and detailed explanation of what treatment entails and what side effects to look out for. Who to seek help from during treatments.
Personally, I would have loved to have talked to someone who had been through treatment. This was such a fearful time in our life..
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!