HPV Tonsil Cancer at 24

The thing is, both GP's said they couldn't feel the lymph nodes that are there. They tried to find them numerous times but couldn't feel them..? They're definitely there so it's not as if I'm imagining things... 

Things are getting desparate for me now, no symptoms have gone away.. I'm in no pain whatsoever, but my lymph nodes are still swollen (and they feel rock hard, but moveable), and my hearing is very muffled on the right hand side. I've had a look at my throat and it's all still very red back there. 

My GP is going to call me tomorrow and I'm going to demand to see an ENT. Eustachian tube dysfunction surely can't go on for 2 whole months.

Will keep you updated!

Update...

I saw a THIRD gp (I know, sounds crazy...) about my ongoing symptoms (nothing has changed since my initial symptoms started, they've been ongoing, nothing worse either, just the same as when it started)

I couldn't believe it, again she couldn't feel my swollen lymph nodes, even after guiding her myself...That's the 3rd GP who said they can't feel anything... 

Told her about my concerns regarding tonsil cancer and HPV, and wasn't very understanding, just said she and her colleagues have made the right diagnosis and that this in no way shape or form leads any of them to believe it's cancer. 

She did order me some more blood tests, with tumor markers and other things that she said will be able to pick up anything abnormal... but how true is this? I thought the only way any form of tonsil/throat cancer can be diagnosed is a biopsy of the suspicious area? What will the blood test realistically pick up? 

I'm having my ultrasound on Thursday, but again I'm not sure how helpful this will actually be.

After all of this, she said if I'm still feeling the same way only then will she refer me to an ENT. 

Just a few questions for anyone who has had HPV related throat/tonsil cancer:

If you had a swollen lymph node, how big was it? was it huge and visible? 

It's been 3 months since I started feeling 'symptoms'...is that time frame too long for it to present as cancer? 

Thanks guys...will post another update once all the tests are done 

Hi there,

I had tonsil cancer in 2013, and my progression was different from those described above but very different from what you have described too.

Briefly, over the space of a week I got a huge sore throat, which first felt sore all over and then localised on the left side.  It became more and more painful over the next fortnight, one night being so acutely painful that I was curled up in a ball in bed just waiting for hours for the morning to arrive.

I went to several GPs who couldn't work out what it was, and had several sets of antibiotics along with a scrape that was sent off to culture to look for infections.  Nothing worked, then about three weeks after the first sore throat I looked in my throat with a torch and a mirror, to see that one tonsil looked huge and rather like it had exploded.  It took the fourth GP to recognise it and get a referral to ENT.  I had a lymph node on the left side of my neck that was so enlarged that I could clearly see it even on the tiny photo on my driving licence, which was taken while I was waiting for diagnosis.

I had no idea it was swollen before it was pointed out to me, and I hadn't noticed it at all.  It didn't hurt, which is very different from when I have had swollen lymph nodes due to fighting off infections.  Apparently the two types feel very different to the people who know what to look for.

In answer to your questions, the blood test looks for tumour markeres which are a particular type of protein.  This is produced by normal cells in small amounts, but cancer cells make much larger quantities.  The sound waves used in an ultrasound exam bounce differently off tumours than they do off normal tissue, thugh they cannot distinguish between benign and malignant cancers.

Finally, one comment about the fine needle aspiration procedure.  Unfortunately this is not the definitive diagnostic procedure that was described above; I had two of these and neither of them showed anything other than muscle cells. The only totally unambiguous diagnostic tool is the biopsy, but there are lots of hints along the way that can guide the doctors.

The fact that the GP has offered ENT later if nothing is clear after the ultrasound is reassuring, but it would seem that if your symptoms haven't changed over such a length of time then it doesn't sound like my experience.

Best wishes,

Josie

get GP to refer you to ENT. I had a small lump just below jaw that you had to press to feel. GP referred me to ENT using the NHS cancer fast track (I can't remember what the official term). They did FNAC and made immediate discovery of SCC cells which triggered PET and MRI scans, two weeks later I had double tonsillectomy and a few weeks later advised to have chexmo and Radio

sorry the editor is so bad on this site that I couldn't get back the correct point to continue edit. Basically, get the GP to refer you to ENT is my advice!

I had no symptoms, just a small lump and before I know it they diagnosed stage iv cancer !!

Hi worried24,

I have had HPV cancer of the tonsil & base of the throat so understand your fears & apprehension since first noticing your symptoms back in May.

Here was my timeline soley as a benchmark for you...,

Had a sore throat & slight swelling right side of neck & thought it might be tonsillitis.
Saw my doc 7 days later where the swelling had increased (size of blackberry - fruit not mobile phone ;-)).
Prescribed 7 days penicillin - didn't touch it.
Went back the following week for a review. Swelling was now 1/3 the size of a golf ball.
Doc wanted to prescribe another course of penicillin & I said I wanted test(s) done as this was more than just tonsillitis.
A fluid test from the swollen glands was performed the following week but proved inconclusive
Back to the doc's & a biopsy was scheduled
Results confirmed it was cancer & an oncology appointment arranged
The good news is that the oncology consultant stated that HPV variants of this type of cancer respond well to treatment.
Think that if you have this type of cancer you suspect it would have manifested itself much quicker & the swollen area would have increased beyond it's current size, but please understand I'm not medically trained or qualified - just my opinion.

Hope this helps...& do let us know how you get on ;-)

Confirming Falcopete's comment. I too have had a tonsil cancer which was also in the base of my tongue.

My case and treatment was absolutely identical to his...even to the Dr suggesting a second round of antibiotics and me saying no I wanted a referral.

So I got the results back from my blood test and ultra sound.

Blood work was all fine, they tested full blood count, and a few tumor marker things? Not sure exactly what that is. Ultrasound was completely clear apart from a small 0.9mm lymph node that was picked up but as this has been the same size for nearly 3 months, they weren't overly concerned..They told me I can stop worrying about cancer at this point.

I still have a bit of a lump swallowing sensation when I swallow on the right side, and still hearing is muffled in my right ear, so may go back for an ENT referral. At this point, I'm not too concerned about it being tonsil cancer as I've seen everyone there pretty much is to see at this point apart from an ENT.

Do you reckon it's worth my chasing an ENT appointment if I still have the swallowing sensation and muffled hearing?

Or based on my results, do you think I can rest easy now and look for another answer that is not tonsil HPV cancer?

Thanking you all! 

Hi worried24,

So glad to hear the good news backed up by results - that's brilliant !!!

Personally, I would put the cancer worry to bed & look for another source of the swelling & an ENT specialist is certainly sounds the way to go to get to the bottom of the swelling & hearing issues.

Good luck with that appointment & do come back & let us know how you get on.

Hi , i would just wait now and start relaxing a bit as im sure you are happy with the results . All this worrying and stress can cause cancer like syptoms so see what happens over the next month and then if you are still concerned then go back to the E.N.T for an appointment . Wishing you all the best and well done with the results .

                                                                                               Chris