I was diagnosed with non-keratinising squamous cell carcinoma in my throat February and I am now waiting to start radiotherapy.....

my tale is as follows:

a lump develops in my right neck last November which I originally thought was a swollen gland following a bout of shingles on my neck (something I have suffered from for years)

when it hadn't receded after 2 weeks I saw my GP who suggested wait another month, and if it was still there he would recommend some blood tests. sure enough, a month later it was still there so he organised some blood tests all of which were normal. he then recommended me to see an ENT surgeon but with Xmas/New Year and a planned January skiing holiday I didn't get to see him until the beginning of February.

at the consultation, it was pretty clear the ENT surgeon was being cautious with his words and after looking around at me, my throat, feeling the lump decided to do a fine needle aspiration. on inserting the syringe a load of fluid came out and he immediately said "haha - I think I know what this is - a branchial cyst" - something relatively benign but needed excission, which we organised for a week later.

the cyst was taken out leaving me with a fine neck scar, and sent to pathology and a follow up appointment nade for a week later. at this meeting, I was told that the cyst was not a straightforward branchial cyst as it showed signs of carcinoma cells often associated with tonsillar carcinoma i.e it was a secondary. a MRI scan was rapidly organised and an appointment made for a week later to remove the tonsils, and he would take some other biopsies from the throat to have them checked. in the end he only took my right tonsil as this was the only one that showed any abnormality on the MR scan. he also proposed radiotherapy to ensure bases were covered.

at the follow up, he told me that the tonsil and other biopsies had proven negative for carcinoma which meant that what he had removed was either the primary (hopefully) or I had an unresolved primary so it was agreed a PET scan would be the next best investigation to see if that could resolve anything. the oncologist was at this meeting and we discussed the plan of action - this was later elaborated on at a separate meeting last week.

so far since the last meeting, I have seen the oral surgeon today to check my teeth in preparation for the RT - I am into hospital again on Monday next to have an impacted wisdom tooth out; I am having my RT mask made next Thursday; I am going skiing for a week to get the hell away from all this; I have the PET scan on the 3rd March; a CT scan on the 4th to position the mask; and I hope to start RT on the 10th March. it's all go!!

a bit about me - I'm 53, an ex-rugby player for 30 years (prop/hooker), I smoked until 20 years ago, and I like my food and drink!! I'm not bothered about what caused the problem - what's gone by has gone by, let's just treat the problem.

I'm extremely fit as I run marathons (3 last year), compete in triathlons, bike and ski hard - last year I completed my first Ironman triathlon. this little issue is now interfering wih my triathlon plans for this year but I am positive it's not going to stop me doing something - it may mean I don't have a great season, but I will have something of a season.

I'm not ill, I am still training (although the tonsillectomy stopped me for a couple of weeks) and did a 2hr run last Saturday. I am positive as I can be. my wife and I run our own business so we have to carry on in life - and she is training for the London Marathon and hopes to get a GB Age Group place for the World Triathlon champs in September.

plenty of things happening here - I will be around to talk some more in due course!!

bring that RT on - I want my life back.

thanks for reading

I should also say - my intro says I'm 53 - well not quite - but I will be tomorrow!!

Hello fat buddha

The Ironman triathlon thing is tough. It makes me faint just thinking about it! But your training has given you the right attitude. Being positive helps.

Did you mean your radiotherapy is scheduled for April rather than March, if so you can amend your post above. Have a good 53rd birthday tomorrow.

Best wishes
Vinod

Welcome Fat Buddha

Happy Birthday!

I too was diagnosied with the same scenario of a Branchial Cyst last year and yes mine was tonsillar cancer. I had my OP a year ago today!
Good Luck with the treatment, you have a fantastic positive attitude which will help you sail through.
Everybody on the site is here to help with any questions we have or to perk us up when low!

Have a Good Holiday

Yvonne

ah yes - thanks for the comment on the dates Vinod.....I meant April not March.........

and thanks for the birthday greetings - I intend to drink Belgian beer and eat mussles tonight to celebrate and go for a long run tomorrow to blow the cobwebs away...........

I think a positive attitude to any health problem is the right way to look at these things - and being fit to start can only help....

as they say "non illegitamus carborundum"........

I would eat every food you love in the next few weeks as it may be a while before you get to eat and enjoy some like mussels again.

Some like crab and lobster that I loved before tasted disgusting during and after radiotherapy. In fact 3 years plus and I still can't eat these with pleasure. Many foods though are now fine and the main problems are still texture related.

Good luck

doesn't time move on quickly when you're having fun??

I thought I'd post an update on my situation and just reading my last post here has brought back some memories - not great ones either. what I hadn't said in that last post is that my 82 year old mother had been taking into hospital the day before with an undiagnosed problem but thought to be a possible aneurysm - she hadn't been in the best of health for some time and was moving from one health problem to the next. unfortunately, it was an aneurysm and she died on the evening of my birthday. I had not told her of my problem as my plan was to leave that until after all the treatment had finished as I felt she would not understand fully and would only worry for me as Mum's do for their children no matter their age. she died without that worry and I am pleased for that - sad she died, but pleased she had no worries. seems so long ago now. and I never got that holiday naturally

anyway, the R/T happened; I coped with it pretty well although the skin on my neck broke down in the last 2 weeks - partly due to my own stupidity of going on a long bike ride and the wet helmet strap chafing the radiation area

I lost my saliva, lost my taste, lost my beard and neck hair, but kept my spirits and general bloody minded attitude!

a few weeks after R/T finished, I started training more fully again and had set my recovery target - a 1/2 Ironman triathlon on the 9th September 2006 - 3 months exactly after R/T finished. In the meantime, my wife had qualified to race for GB in her age group at the Triathlon World Champs in Lausanne on 2nd September - she was making up for my bad year!!

Well, I got my 1/2 Ironman finish - and only 11 minutes slower than my best time the previous year!! 5hrs 37 minutes.

Most of my taste buds are back, my hair is growing back in places, my saliva is returning but most importantly my health and fitness seems to be back on song. I know I have a long way to go but I feel as if I'm cured of this god awful cancer.

So much so that I have signed up for 2 Ironman events in 2007 - alongside my wife.

Life is good again.

Postive vibes to everyone - I have loads so am happy to pass them on.

Hi Fat B,
Very sorry to hear about the death of your mother. With all your health worries to contend with as well! It is/was an awful lot to contend with.
I see the diagnosis "branchial cyst" rears its ugly head again.
If it was genuinely thought to be a benign branchial cyst they would not have cut it out so quickly. This diagnosis is sometimes used as a delay before further tests take place - Let's wait and see syndrome - while the bloody tumour grows ever bigger. That's what happened to me anyway!
Anyway - enough of my cynicism! You seem to have recovered remarkably well from surgery and radiotherapy. 6/7 months -it's amazing.
Did you have a neck dissection?
If you didn't need one you were lucky!

Good luck - cheers Tony K