That's the spirit! Yeah, I basically been in continuous treatment for four years to hell and back, but I was born a fighter, and doesn't matter if I win or loose, well it does, I'm a sore loser lol, but that I put up a good fight.

Hey John, Sorry I left out that the stage 4 was due to met. to at least one node. in the lower left neck. Sad thing is that my HIV specialist thought that it was a simple clogged salivary gland. So it sat their getting stronger and bigger for 4 months until I got on with my companies insurance HMO. Kiaser, not sure if you have heard of them but they are the biggest HMO in California and beyond.

Hope you are having a good day, Shawn U

Hi Shawn
Mine came up in April, same tie I got cold, flue symptoms and both sides of neck nodes were up then horrendous flu for two weeks followed by two weeks recovery and a follow on chest infection. Left node didn't go down and then slowly reduced but not completely. GP gave me antibiotics for a week to clear up chest infection. I went back two weeks latter as still small bump from left node that the started to grow. Thing is it was active probably late March to early April and I didn't have it out until end August. I presented 8-10 week after I would have done if no flue. Ironically, the primary was, until the last four to five weeks before surgery, no even making tonsil bigger, just showing a lighter white pinky greyish shade when first looked at in ENT.

So it had around six months to grow, had just breached but no sign growth around it and tissue tested clean but may be cell transfer. Frightening that if aware Id have been three months ahead of the game. I try hard to politely mention this to everyone to build awareness - I feel I have that duty. My classic car club, taxi drivers, friends et all - I point out the warning signs and that 80% neck lumps in adults are cancer.

I'm told on phone today that staging for head and neck isn't quite like other cancers. My T2N2aMO should not be looked at as a 4a which some matrix show and in neck it is typical that it has got to a node as that's how we mostly find out. So often if it has the primary is still very small and treatable more so than perhaps a single tumour that has already breached and is inoperable. Was also told the SSC tends not to spread other than locally in a particular hurry.

In the UK there are around 7500 head and neck cancers a year and tonsil primary is a very small number of those so I guess there is a lot still to be understood. There is anew policy in UK to treat head and neck in adults as cancer unless proved otherwise so now when presenting at GP there is an instant referral to head and neck for inspection, biopsies, PET and MRI. Adult neck lumps are assumed to be cancer until proved otherwise.

This sounds a good policy as it fast tracks stuff. I was GP to ENT in 9 days, five days for PET, MRI, biopsies and then three days after results. On the operating table in 20 days from there. Post op results ten days latter and prep for radio, chemo, etc all done in a 20 day gap to allow neck dissection to heal enough to handle rads.

Where abouts in Cal are you. My half bro is in LA.

Hi John, where are you being treated? I was at the Luton and Dunstable and found the staff there very good and did manage to take the time to talk things through. Don't forget your head and neck nurse and the Macmillan Nurses, who will be able to answer a lot of your questions. Wishing you all the best with your treatment.

Welcome and sorry you are here. Please find out if its HPV positive. It won't change the treatment, but more info is better than less. I see you are getting the PEG. It good to have but use it a little as possible. Try to eat and drink as far into treatment as you can.

Your next battle will likely be neasea and constipation. It might feel like you are being assulted from both sides. Take the time now talking with the generals and get the battle plan set. Stock the ammo dump with weapons of their choice and keep them close. Make sure you supply line are clear. Driving my become difficult, so line up some fresh recuits and have them at attention in case you are pinned down and neeed evac pronto. And what ever you do don't skip meals. Alway hit the mess tent. Keep your canteen filled at all times and hydrate when ordered.

Sorry but you have been drafted and you are going to war.

Hi there in Ohio

I did once wear a uniform for a living and pretty much that's how I am viewing this, get the kit sorted and then go for it. Have hospital transport over here so get picked up and dropped off. Have blender at the ready so if really bad I can still try and sip stuff.

My staging is similar to yours, except a T1 primary, was still contained in tonsil but had grown a bit so got a T2.

Been having a bit of a paranoid week and thinking too much, have pea sized bump upper neck and jaw area, prob a saliva gland or maybe bit of tissue scaring as the neck dissection is major piece of work or my dental surgeon might have been a bit rough, loads bruising from lower left side wisdom, other three must have been easier.

It is a bit like fear before being deployed!|Going through keyed up and ready to bored to just wanting to get into action...inactivity and waiting is corrosive. Shall content myself cooking up a storm, blending and freezing emergency rations. Lots soups, sauces etc...trying to think of stuff I can generate some texture in to make it interesting when taste buds take a whack.

All the best,

John

Hiya Mandy Rose

I am down in Essex..but it doesn't show (for our American friends here, there are things called Essex man and Essex woman - think Jersey Girl and you'll get the picture lol).

Everyone's really good but all moved so quick...probably a lot cant be answered until post op and all the results writ up.

Re staging, with other cancers stage 4 are scary but in head and neck the combined primary and node appear to put most of us in that box as generally head and neck doesn't get spotted until a node pops up. When my lump in neck exhibited and was first checked in ENT the only tell tail from the tonsil was it was a slightly lighter shade pinky red than the healthy one.

Only started to grow around four weeks before surgery which was a good 13-16 weeks after neck lump started to show, then go away then came back to stay.

Rather hoping I can manage without the PEG..from what I hear it is a bit pot luck, some can manage without and some use it a little towards the end.

John

Hello John:
Greetings from across the pond. I'm new to the forum myself having just been diagnosed with SCC and HPV.

I don't have any knowledge to share with you, but I do have time to read your story, learn from what you and others have to say and hopefully keep you cheered up along the way.

Welcome to our rather large family.

Hi Tony,
Hang in there, it is harder at first I found when investigations and results are on going. I start six weeks of rads Monday, with a once a week chemo thrown in to.
Just been learning how to maintain my feeding tube as most find rads knock the throat hard and fall back on the feeding tube from time to time.
Its a scary time and lots to take in it can be exhausting.
Keep in touch, share the journey..
Are you still flying?

John

Welcome, we al start and learn as we go with this. Non smokers are shocked when I tell them I have never smoked.

Started radio and chemo this week. The week plan is one chemo and rad on a Monday then rads only Tuesday to Friday. Having Cisplatin, didn't leave any strange side effects, a little sickness due to constipation as I was given pain killers for the peg insertion that do that and should have been given the other drugs to ease it. That aside the effects are lethargy. After the third rad I found I needed to get home have a cup of tea and lay down and grab an hour or two sleep.

Skin is holding up, a little red and I can feel tightness after rads in throat and neck and get a bit of an ache at the target site which I am told is great as it shows rads are hitting the spot. No problems with eating yet although jaw is tightening on one side, already was as side effect of neck dissection and the wisdom removal was worse on lower left too - ouch.

Five more weeks to go, so far 1/6 chemos done and 5/30 rads. Technically I am Tx as everything removed in neck dissection and tonsillectomy so all this is to kill anything that cant be detected.

Feels good to be in combat with it rather than waiting. My little advice is, role with it, let the treatments wash over you and focus really hard on managing the side effects as early management apparently means less discomfort latter and loosing a few hours sleep when you really need it isn't fun.