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 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:

It's good to find somewhere where the same symptoms I've been having are articulated. I've had a similar feeling in my neck, inside my tongue in the right side. This has been going on for about 6 weeks and only sore when I swallow. I've been to the dentist for a thorough exploration and he's found nothing. I've been to the doctor who also can't find any swelling or lesions. He's given me a course of antibiotics as an elimination exercise and if still there then referral. My obvious concern is that both my dad and his mum had throat cancer. Interestingly I also have fibromyalgia. Plus have always had teeth issues.

I have also had intermittent pain in my right jaw and up to my ear. My doctor wondered if it might be to do with the salivary gland. Although no swellings or lumps.

Really interested in everyone's outcomes. It all seems the same as everyone is describing only on the right side.

I have just come across this. I've been having the same on the right side. Sore tongue, but also strange marks on my tongue. Not so much a sore throat though. But if an ache. Face is swollen down the side of my nose which the doctor says is sinus. Doctor said ask the dentist. Dentist said go to the doctor as l also experience nerve like pain in teeth. Nose and part of my face feels uncomfortable. I guess your suggestion would be mri? It's all very worrying. Hope you're all feeling better.

Hi Lmh. Welcome to the forum.

I am not a doctor and I have no medical qualifications.  However, among my many health issues, I do have a chronic sinus problem! 

What you describe is very reminiscent of my sinus problems over the years: pain, swelling, affected nerves in the face.  Dentists are usually pretty good at recognising cancers in the mouth and what your dentist saw clearly didn't ring any alarm bells. That should be reassuring. 

I think you do need to go back to your GP and get a clear diagnosis. I don't whether or not an MRI would help to diagnose a sinus problem. I know that I had a number of X-rays some 30 years ago, and they didn't show up anything of any significance.  I also know from experience that antibiotics are of little value. They sometimes reduce pain and swelling while you're taking them, but a few days after the course finishes, you're back to square one. Decongestant tablets or sprays can sometimes help, but for me they're not a sure fire thing. 

I have found the following home remedies reasonably useful but neither of them are quick fixes:

1. Buy a facial sauna from Argos. Use distilled/de-ionised water (not tap water) and put in a drop or two of herbal decongestant. Then inhale the fumes for about 5-10 minutes. Do this 2-3 times a day. 

2. Use NeilMed nasal rinse twice a day.  This is probably more effective than the facial sauna, but it has a lot higher running costs and it's more awkward generally. 

The problem with sinuses is that they're awkward to get at, and there's no easy treatment options.  You can control the problem and reduce the overall level of discomfort, but it may be something you're stuck with. 

I also had pain when swallowing on the left side of my tongue as of mid-November (I thought it was the throat at first) that has gone away. As noted above, it seems this is a symptom of a sinus problem, mucus clogging the sinuses, as waggles noted they also have ear problems and a feeling of something clogging something up. What luckily cleared this up for me (I’m not saying this would fix symptoms persisting for years, but may help someone who has just recently noticed them) was breathing steam wherever possible (over a boiling kettle, boiling pots, hot shower..), and blowing my nose very frequently. However, I imagine sitting under a blanket and breathing in steam from a pot with just boiled water followed by blowing the nose may be even more effective in lessening discomfort. Plenty of moisture from outside and hydration from inside (i.e. from drinking water) keeps the mucus thin and easier to pass. Hopefully this may relieve someone’s symptoms or at least reduce discomfort. Best of luck to everyone.  

I have never done anything like this before but I'm getting a bit frightened.i went to the doctor about 10 weeks ago with a sore threat and was given antibiotics. They didn't work. Went ack again and the Doctor said that it would be a virus or the result of me suffering from GIRD. I was given a tablet to take on a night and one to take on a morning to control the acid . I went back to the Doctor again to tell her that I now have tenderness under my chin a dull ear ache in both ears and still the painful throat.yesterday l had blood samples taken, blood pressure taken and was sent to the local hospital for a chest x ray. The Radiographer after taking the x ray asked me if I was suffering from pain or coughing, I found that disturbing. Is that a question they would ask normally? Or because they had seen something. I have been told by the Radiographer that will take three weeks for the GP to receive the results and by the nurse who took the blood sample to telephone in five days. I am afraid of cancer The Doctor also referred me to a Dentist to examin my mouth he found nothing wrong  Has anybody any idea especially with regard to the Radiographers questions or am I paranoid.

Hi I have very similar symptoms and I'm starting to get worried did u ever find out what was wrong any info would be great 

Thanks

Hi collier.

Sorry for the late response, but my answer might be useful to others who read this thread, even if it's too late to help you. Where are you now with your tests?  Please could you post an update. 

Regarding the radiographer's question: usually with an X-ray, no one gets to see the image until the film has been developed, which is going to be at least several minutes later. So, it really depends on when you were asked the question. If it was during the session, then I really don't think the radiographer could have seen anything. Possibly he/she asked you the question just to make sure that any painful areas did not need a separate (second) exposure. 

Please try not to panic. Cancer is low down on the list of possible reasons for your symptoms. 

Hi everyone. I have been reading these posts since November 2018 (the date of my issue). I don't know if it's comforting or not, but I have very similar issues to a lot of you.

Back in November 2018, I got this strange tingling sensation under my jaw, like it was going to cramp up, but it never cramped. After 2 weeks of this, I suddenly got a horrible feeling that something was stuck in my throat. As usual, I panicked and checked google which told me I had an hour to live. So I went to Out of Hours and they told me it looked like Acid Reflux issue. So I was prescribed acid reflux tablets and nasal spray.

I waited 2 weeks with this and it didn't work and the feeling didn't go away. So in December 2018, I went to doctors to let them know the feeling is still there. They checked my urine for diabetes? But that was fine. No diabetes. I was given more spray, nystitin? and antibiotics. Needless to say, this didn't work.

I went back to the doctors again and wasn't given anything this time. They just referred me to ENT. My ENT was set for March 2019. So I had 3 months to sit and worry.

During these 3 months, I was told to go back to the doctors if the symptoms worsened. They did. The feeling spread to my ear and a bit of my neck. My right side of my tonsil was bigger. But I was "told off" by one of the doctors because I already had an ENT booked and I was told there was nothing they could do. I felt so little and didn't know what to do.

March 2019 came around and I got my ENT appointment. Got the camera down the throat. Doctor couldn't find anything. I breathed a sigh of relief because I thought that was the end of it. I was told just to forget about it, and the feeling would go away. My only issue was, they didn't do biopsies, take bloods or check anything else.

April 2019 and the feeling is still there, but this time, it came with more symptoms. Harder to swallow at times and the loss of my voice a couple of times. So I went back to the doctor. This doctor prescribed me with more acid reflux and nasal spray. He said I didn't use it long enough back in November 2018. So I done what he asked. He said if it didn't go away in 4 weeks, I was to go back and see him again.

May 2019 and 4 weeks has passed. Symptoms are now worse. Not only is it a feeling in my throat, there is sharp pains along with it now. So I told the doctor again. Checked down my throat and in my ear as usual but no other tests done. He has sent for ENT referral again. He has told me it will take 2 to 3 months again and I've just to sit back while the symptoms progress.

A couple of days later, I called NHS 24 because I don't know what else to do. They told me they couldn't help and I was to go back to my doctor. I don't feel I can go back as I've already been referred and waiting on my appointment letter to come through and they will just "tell me off" again.

My massive issue is, during this whole time, I 've had no tests done whatsoever (apart form the camera in throat). But they haven't checked my swollen right tonsil. No biopsies. No allergy testing. No swabs. No bloods taken. No MRI. And no anything else that may be relevant.

Are they doing the right thing? And having seen the doctors so many times as well as ENT, is there anything to worry about? They just seem so relaxed about it, while I have had nothing but sleepless nights for 6 months.

Any help would be great!

Barry

Hi Barry sorry to hear about all the lack of interest, I can relate to you entirely at the beginning my symptons were similar, not much response from docs, it's quite a long story an sounds quite unbelievable although I'm still here to tell the tale after a lot of trauma., pls insist on biopsies it's your body an I'm sure you are not imagining things