Early Diagnosis - Tonsil Cancer

Early diagnosis is important to treating mouth cancer successfully.

Tonsil cancer can present in different ways, often mimicking a 'run of the mill' sore throat or even ear ache. It wold be useful to know how the different mouth cancers present. I would be grateful if you could answer the appropriate questions.

For those who had a tonsil cancer, how did it present? Choose as many answers as did apply to your own case, (or if you are a carer: to the one you care or cared for).
Original Post
Based on 19 participants so far, the frequency of presentation as reported above is:
  • Feeling vaguely unwell (53%)
  • Enlarged tonsil (63%)
  • Swelling in neck (58%)
  • Feeling of something stuck in throat (42%)
  • Difficulty swallowing (32%)
  • Sore throat (37%)
  • Ear ache (32%)


The delay before you were referred to a specialist after you noticed 'something not right':
  • within 2 weeks (58%)
  • between 2 - 4 weeks (16%)
  • between 5 - 8 weeks (16%)
  • between 2 - 4 months (5%)
  • more than 4 months (5%)
Only 74% were referred with 1 month!
The trouble is not just the delay in referal, but the length of time taken for tests. My mother was seen by a specialist in a week, but the MRI scan took two months to be performed (which they said was clear) and another two months before she had the tonsil removed.

I must admit im deeply dissatisfied with the NHS, it seems to be failing on almost every level as an organisation, and while people moan about private healthcare systems in other countries, they clearly seem to work more effectivly, given their higher survival rates.
By specialist - i mean someone vaguely competent and noy some uselessly pathetic registrar who doesn't know his arse from his elbow!!

At THE earliest opportunity see an ENT consultant personally even if you have to pay!
With money!!
A dopey registrar makes you pay too

with your life possibly.

sorry to be negative - but I assure you it happens.
tony k
These are the kind of issues we need patient advocacy for! I need your help to help me help yourselves. So please get involved with MCF and make the mouth cancer patients voice and concerns heard through the cancer groupings like Cancer52 and Cancer Collaborative Group that we are members of and attend conferences like Britain Against Cancer 2009.
Well my mom paid to see the top ENT specialist in Walsall, and he faild to diagnose it. As we have said to the hospital, we think he became totally complacent and just ignored my mom.

One thing maybe Vinod could answer for me, how was it possible to miss the Caner on an MRI? Her left tonsil was twice the size of the Right, she had involvment in her tongue (However there were no nodes involvd in June) how can they have missed it?
I think that a specialist would give his best informed answer from the histology results based on a decent size of tissue. For some reason they would hedge their bets if it were based on and MRI, a CT scan, PET scan, ultrasound or any other type of scan.Some of these scans might show tissue abnormality but only the histology dept could come up with a definitive diagnosis.
I had a fine needle biopsy which showed up fck all and the fcking incompetent registrar told me it was -ve for cancer but failed to fully explain the reasons why.
Probably a branchial cyst he said (to explain the very abnormally swollen lymph gland I had had for the previous 4/5 months.
Registrars! I wouldn't trust them as far as I could spit them. They are only there to save the NHS money!!
tony k
Dear Dr Vinod, I saw 7 Ent people in two different hospitals, I had a thing that looked like a lambs kidney at the back of my throat, and what looked like a hens egg under the skin on my neck.DR No 7 said I want you under the scanner in under 30 mins. Come back at 9.30 tomorrow, to see Mr Peter Clark, who informed me I had the classic throatcancer of a smoker and spirits drinker. I have never smoked and due not drink spirits.
Hi La Reine

I'm very sorry about your diagnosis, but I think you'll find a lot of shoulders to cry on (if that's what you need), and fellow travelers who've already been down the same ****** road.

Quite a few of the folks on the site are just like you: female, non-smoker, teetotaler, so you're not alone.

Please keep us up on your latest developments.

Julia
I went to see my GP, who examined my neck lump and said she thought it was an enlarged lymph node due to the virus I had previously had, she advised not to lose sleep over it but said as its a lump you know I have to refer you to the ENT specialist dont you? I saw a consultant within a week who examined me and said he didnt think it was anything took a FNA and booked me in for an MRI. Three weeks later I found out there was not enough tissue in the FNA and was seen by a different very experienced consultant who seemed to know exactly what he was looking for, he took a sample from my tonsil and a huge FNA filling three slides. Four days later he was telling me it was tonsil cancer. I am now going through the treatment path as so many others on this site have before me. I am really grateful that I saw the experienced consultant but, understand the feelings of all others on this site when the diagnosis takes so long.
Well done on such speedy treatments. Much better than from my incompetent bastard of an SHO who kept putting everything off with a wait and see approach."You're not losing any weight and you don't have night sweats."
He took FNAs from 2 swollen lymph glands which didn't show anything - not enough sample-

Surely this procedure is totally useless - we shouldn't be guinea pigs for incompetents!! Judging from the evidence on this board this is quite true.

I also think (but can't prove) that the poking into the lymph glands allowed cancerous cells to escape and grow outside those lymph glands.

good luck to you gd
Can any one help
It started January 2014 I woke up one Monday morning with a pain on the right side of my neck I noticed a small pea size lump by the time I got to work on the afternoon I found another lump and by the time I finished work I had another lump all just the right side of my neck I got to see my gp on the Tuesday morning whom thought it could of been glandafever I had to go and get blood tests for this so by the Friday I got no glandafever all my blood test shown was inflammation by this time I'm feeling drained can't sleep and still lumps on my neck so my doctor sends me off to Hosptial emergency assessment unit where I have blood test taken lumps felt chest X-ray and a couple off weeks later I had a ultra sound on my neck which showed enlarged nodes due to the virus I had and I got told to carry on with the doctors antibiotics I had an out patients appointment beginning of April 2014 consultant says one of my glands are still swollen I told the consultant it feels like something is stuck in my throat so I had the little camera up my nose and down my throat he says looking all fine and this swollen gland should come back to size all in due course well a week later I end up with tonsillitis yet again oh forget to say the January episode I ended up with tonsillitis and a chest infection so I have one right enlarge tonsil all the signs of infection again but from January 2014 till today my tonsil hasn't gone back to normal size I have had to have another blood test taken all I'm waiting to know did any of these signs happen to anyone else or am I just reading to much into it? Or I'm going to have to wait another 6 weeks to see the consultant again ent department or am I just having a recurrent episodes of tonsillitis ?
Hi SJK1,
You must be so worried and stressed. I really hope it works out fine for you and I think it will.
Age - if you are under fifty you are classed lower risk so you will be put off longer. - I was 49 (non smoker and drinker)
Blood tests will discount some cancers etc and nasal cameras can't see everything (Been there!) Ultrasound - waste of time(cancer cells so tiny!)

NOW - if I were you I would PAY to see a specialist ENT consultant and get him to have a dam good luck at your tonsil (and lymph swellings). All this with a view to arranging a biopsy of your tonsil.
Only a Biopsy will be conclusive. This illness could be HPV related - I'll leave you to check things up on that. Blood tests for that would have to be specific - so probably not tested for time round.
I'm not sympathetic to the cretins who saw me when I was dreadfully ill.
(Tonsillitis - severe .A lymph gland like a hens egg - had it for months ultrasounded etc - 6/7 months of waiting/putting off - and then the dreaded diagnosis! (March to late September 2004)
You don't need that - be proactive - bang on tables - make a nuisance of yourself. And above all be careful about being too trusting on what you are told.
See a bona fide expert in the field asap
Good Luck - Tony K

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