Hello Gjb, 

I'm sorry to hear about the symptoms you've been experiencing and can understand your need to finding out what it is causing it. If you're concerned about the results that have come back so far maybe you could ask your medical team if it would be possible to have biopsies taken from other locations of your oropharynx? One of our lovely members here on the forum, [@Vatch]‍, has had experience of tongue based cancer and now that I've tagged him in this post hopefully he will be along soon to share his advice and experiences with you.

I hope this helps Gjb and you are able to find out the cause of your symptoms soon.

All the best, 

Steph, Cancer Chat Moderator

Hello,

I know this is an old post, but I beg you, let me know what your finding was. I'm stuck with doctors not wanting to investigate my symptoms very much like yours, for the past 10 months. Where do I go? What should I ask for? I had a scope and a neck ultrasound, all clear, but the pain persists - and getting more frequent. I'd appreciate any help. Thank you.

Hi mirmir. Welcome to the forum.

This is my first contribution to this particular thread.

I'm not a doctor (I always say that!)

I was diagnosed with fibromyalgia in autumn 2017, and shortly after I developed a persistent sore throat. I thought nothing of it as I'm an amateur (very amateur) musician and singer.  However it didn't go away so I went to the doctor. Her first thought was gastric reflux and she put me on a three month protocol of major strength proton pump inhibitors, acids inhibitors, and antacids to see if the sore throat resolved. It didn't and I went back just before Xmas. We discussed the possibility of the fibromyalgia causing the throat symptoms, but she wasn't sure and was keen to eliminate cancer as a possibility, so I ended up with an urgent ENT referral. 

I had a series of ENT tests, including a nose/throat endoscopy, a neck/throat MRI, and a panendoscopy with biopsies under general anaesthetic. The only slightly unusual feature was that the tonsils at the back of the tongue were enlarged, and no trace of cancer. After this, the ENT sent me back to my GP. 

So, I think the lesson from me and the other posters is that throat pains and mouth pains occur, and they're not always caused by cancer. In fact, cancer is probably the rarest reason for such pains. 

My dentist gave me a useful rule of thumb: anything wrong with the mouth, tongue, throat, oral cavity, whatever, whether it's painful or not, should be shown to a doctor or dentist if it hasn't resolved after 3-4 weeks. 

So I suggest you need to visit your GP and if he or she doesn't know what it is then ask for an ENT referral.  If you can get an urgent referral, then so much the better as you'll get an answer sooner. 

Hi mirmir,

I know how stressful this is for you and I'm sorry for hearing you are in pain. 

I went through neck ultrasound and mri - and nothing explaining the pain was found (only an innocent thyroid nodule on the right side).

My pain is still there and I've been sent over to see a maxillofacial surgeon (in progress). 

All I can say is that the pain is only an indicator of something going on - not necessarily that it will kill you. I have a hard time locating the source of the pain, but as the nerves run via the ear, my guess is that the source is there (for me). Previously I would have sweared that it's the tongue, but that's been cleared by tests. 

Sadly, I can't help you medically, but my best advice would be to start with a scope in your throat, then push for some tests (ultrasound or mri). 

Regarding swollen tongue... you must be sure it is swollen - not your anxiety plays with you. Do you feel any lumps/bumps in it? Does it hurt if you press on? 

Have you been seen by anyone?

Keep away from Google, and take it step by step.

Good luck!

Hi I’m new to this, but have read most of your notes... I have very similar pain, always on the left, under tongue and a feeling of something stick or clogging something up, tinnitus also, but burning in the left ear occasionally, and am wondering has anyone been diagnosed. I have suffered with this for at least 3 years , had an mri on my neck, ultrasound, shown nothing ,wondering wheather to pay private as ent cannot find anything wrong ... so so frustrating . 

Hi waggles. Welcome to the forum.

I've always been a bit doubtful about going private; after all, it's the same consultants who work for the NHS and private companies - you just get to see one quicker!

I suggest you need to go back to your GP and ask for a referral to a different hospital/ENT consultant.  It is possible that something has changed in the last couple of years since your MRI which might shed light on your problem, or a new consultant might have some different ideas.

You can use the money you save by not going private on paying for car parking fees :grin: