Hello, this is a very stressful time for you and I'm sorry to hear you are not getting answers.
My first question is about where your Husband is being treated. Is he at a Comprehensive cancer centre? A CCC. These hospitals are the most experienced at dealing with these Head &Neck cancers. They do it all the time, all week and are at the cutting edge of treatments. They use a whole tumour Board approach where your treatment decisions are decided by the surgeons, the radiation and chemo oncologist, the oncology dentists, dieticians Speech Therapists etc,. At any time through this did you get a second opinion from anywhere?
My concern is that your Husband did have spread to a lymph node. Even though this has now been removed in the neck dissection. I would have presumed that this warranted radiation treatment. This cancer likes to spread and the risk of recurrence is high. Personally I would hit it hard from the get go and I would be wanting follow up with radiation.
Many others will, I'm sure, come along shortly and give you further advice.
My thinking is to be upfront and honest with the kids. They will already know Dad is unwell as he has had surgery . Reassure them that he is being treated by the best and there is an excellent chance of a cure.
I wish you the best.
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!