Hello
Thank you for the feedback..is worrying suddenly working out the combined T and N dropped me to 4a. Consultant did say that my tonsil tumour measured just enough to get me a 2 when in fact it was no more dangerous than if id had been a bit smaller and got me a 1 because it was contained, now cut out and no extra capsular spread plus rest of tongue and mouth biopsies clear. He said he'd had people with half the size tumours that had spread and breached which were more dangerous.
Lymph node wasn't good, breached capsule and 34mm so got me a 2a there.
I guess I got myself very hung up on the numbers..

Thanks again.

John

Hi
Getting my work up week before rads start. No one had mentioned Fluoride trays, will check those out.
As you can see fro my responses I am wrapped up in the stage 4a shock even though neither tumour alone would be more than a 2. I haven't had staging properly explained, not sure if my consultant likes to keep to individual cases but also spotted couple letters to my GP, one was T2N2M0 and the other T2M2aM0 not to mention had written up with a transposition to right side. Typing error but not what patient wants to see so made sure everyone knew which left we are talking about...
Very confusing at a time when so much is happening and the brain is battered so not everything sinks in.

All the best and thanks again.

John

Many thanks David
WOW, you sound fit man! I'm not that fit myself but likewise a non smoker all my life. Apparently this is something that counts in our favour a lot.
I think maybe I am having a huge panic re the staging and stats verses what my consultant is actually saying - which post op is all very good news. Also that although a stage 2 due to tonsil tumour size it hadn't spread or breached whereas consultant said he had seen much smaller tumours breach into the tongue or other places which was more dangerous than a 20mm one that was still contained.
I'm very short on technical information, need to intellectualise what is happening. The facts, character of it and so on. Knowledge, good or bad, specifics, is what I haven't had too much off from my team. I do feel they prefer to avoid hard talk or maybe are still judging if I can take that as some people I know wouldn't want to hear anything and just go along with what they are told as more information might be scary.
Long and frightening path no matter how well we maintain dignity and poise I guess.
From this and other forums I do see despite the hard times many have that so many are there with a helpful encouraging word or shared experience. At a time when we would all be justified in being selfish and 'me' focused there is so much compassion and selflessness displayed.

All the best,

John

John - your rads start date will be my rads end date. I surely will be thinking of you. I understand the paranoid thoughts. Daily, sometimes min by min or second by second, I have to take my thoughts captative and live in the moment. Even if the moment is not great...I just don't want to jump ahead to any paranoid thoughts. Best wishes.....

John, the staging is just a number. Don't get too wrapped up in it, as numbers don't define us. Mine was T3 due to the size, etc., but, here I am a year later, still carrying on and living life.

The panic about lumps and bumps will always be there. I currently have one on my shin (yes, that's weird), that I'm in a bit of flap about, but I try and remind myself that it is getting checked, and stressing about it won't change whatever it is, and I'll deal with whatever it is.

Don't let this disease define you. You are more than statistics!

HI Nancy
Sounds like you have been through a lot. I have read a bit about primary being hidden or sometimes undiscoverable. Even that sometimes the body beats a tiny primary but before it happens it starts something somewhere else.

I have this plan shaping up, for the future, to develop a bit of a map as to how to make the body as hostile an environment as possible for cancer, I guess this means health, fitness and diet.

Trouble is the NHS, no one has had a conversation beyond 'good results from surgery', breached capsule but tests show no spread as far as can be detected from node' and 'tonsil tumour hadn't breached but was bigger than expected' so 'we have to tackle any cells left but there isn't anything we can detect right now'.

I then get glimpses of letters drafted to GP that have the staging T string but no one has sat and explained this and what poorly defined margins are.

Public health care moves so fast, like a conveyor belt, not that I feel I am being neglected, it has moved quick and my treatment I gather form forums and research is on target with leading protocols but a bit more information would be great from consultant.

I'm going to raise this in discussion with him. I think also they are fearful of maybe wrapping up to much technical speak in case they scare the hell out of someone.

Must keep in mind the quick operation, neck dissection and bilateral tonsillectomy has got rid of the tumours and no spread elsewhere in mouth and throat so that is a lucky break.

Many thanks
Tough time and I feel in dark a bit with consultant who hasn't got into the detail other than to say great surgery etc., and no signs of further spread. The target I am told now is to clear up any microscopic disease. I will feel so good when I get some and rads on. I cant stand inactivity and want to get into the fight so to speak.

PEG and chemo prep next week so really need to chill and have a week without hospital visits and relax before next weeks prep and briefing.

All the best,

John

Yes and all the best to you as you relax this next week. We will see you here again....

I always did the same, relax, rested up, and had few good meals with a drink or two before take off.

Hi Paul,

Looks like you have been through it. My nature is to anti up for the fight and then want to get into it no matter how tough. Spent a few years in uniform when armies wore green in good ole days of the cold war..have a 'tackle it' mind set.

Unusual but I have found a much much more positive mind set here than main UK forums. I have half American, dads side although raised in UK. US side, half bro in LA, cousins in NY and friends down in Fl.