Hi from over the pond. I'm near London in the UK and working my way through treatment for tonsil cancer.

Diagnosis July 25 after biopsies the week before. PET/MRI followed. Then neck dissection and bilateral tonsillectomy the last week of Aug. Nothing new on PET or MRI other then the neck node and tonsil.
Some delay in me presenting with general practitioner as I had flue same time lump started and nodes on both sides were up but left one didn't go down so six to eight weeks behind when I would have been into the doctor.

The node was quite well developed, but the tonsil where the primary has been confirmed hadn't changed in size, it was a little whiter. It did plump up before surgery a month later.

Surgery was left side neck dissection, modified radical so muscle and vessels left in place but all the nodes from top of head to upper chest gone. All clean apart form the one that had exhibited. Same node that serves the tonsils. Full tonsillectomy showed on left side tonsil infected and confirmed it was primary. Fortunately, no paralysis of the shoulder and out of hospital 36 hours after getting of the table.

Post surgery investigation showed no spread from tonsil although characterised as T2 as it was around 20mm in one direction but no capsular spread. Lots biopsies inside mouth, around tongue showed negative which was good news. The single lymph node had got quite big, just over 3cm and had breached the capsule but no sign from tests of tissue in region that anything had spread. Got characterised N2a. No distant spread got me an M0 - T2N2aMo

I was told initially 80% then 60% prognosis but then told post surgery that there is no detectable evidence of disease but there will almost certainly be remaining cells 'microscopic disease' that either are not turning nasty or there is nothing that can be detected so a mopping up process of 6 weeks radio, 5 days a week, with a Cisplatin as a sensitizer on the Monday of each week. So in all 30 rad and 6 chemo sessions concurrently.

I am with the NHS and no complaints re response times and speed things have happened but as they have limited time with patients I do feel a lot of questions need answering.

I am a bit worried as we have gone from a 80% expected prognosis to a lower one which I guess is as a result of the single node size and breach of capsule. I think my T string equals grade 4a which I don't read good things about prognosis wise. Then I am told it is all cut out and we are treating for a cure so expectations can be more positive, especially as no distant spread or evidence of any active disease post operation.

For extra fun, three weeks after neck dissection and tonsillectomy I had all four wisdom teeth out under general as part of prep for radio.

Where I feel information is vague is risk factors of distant spread at this stage or local reoccurrence.

Chemo/radio starts in two weeks (second week of Oct).

I am a social drinker, not excessive but above the 20 units recommended and a life long non smoker. 46 and reasonably fit. Likely an HPV type I am told. I have given up drinking as in future silly to tempt fait.

Anyone ben in a similar position? Would really like to hear your experiences.