+ Reply
Log in or Register to participate in these discussions
Looking for some advice as I'm getting quite worried

Hey All,

Any advice would be great as right now I'm living pretty scared in my head.

About a year ago my tongue started burning. It's been non-stop, and the pain is completely in the left side of my tongue. Feels like burning/swollen. In October, my left lymph node in my throat started to hurt and get a touch swollen. Adding to this, sometimes the left side of my neck gets pretty sore.

No actual sore throat aside from where the burning on my tongue starts (its at the left base back near my tonsils), and only occasional ear pain very lightly.

I've seen my dentist 3 times, an ENT twice, had a gastro scope, and a CT scan. None of those things showed anything to be concerned about cancer wise, but we still don't know the source of the problem (and let's face it, not knowing is the worst).

They've ruled out geographic tongue, burning tongue syndrome, thrush, tonsil stones, etc. No biopsies yet as they've found nothing to biopsy. I keep asking for them to biopsy my lymph node, but that's getting me nowhere.

They keep telling me it's unlikely to be cancer, but it's hard to get it out of my head when the problems are there daily. I'm going to do bloodwork and another MRI in early April. My doctor says that the likelihood of it being cancer is very low now as he believes one of the various doctors I've seen, or tests I've done, would have found something....but I also know it's fully possible for them to miss things. It's not like all cancer is a tumour.

I guess my question is, how worried should I be based on what I've said above, and what else should I be pushing for with respect to testing?

Thanks

14 Replies
MCoaster
418 Posts
Welcome PunkyBrewster

I am sorry that you find yourself in such a stressful place. Sometimes it seems as if you have seen every specialist except the one you really need.

law‍ has, unfortunately for her, experience with oral cancer and may be able to help. She is also very supportive to others. Thanks Law.

Hope you get a diagnosis soon and that you can start your healing.

Take care.

MCoaster
Thanks MCoaster‍ I appreciate the reply.

You're right, it does seem like an endless runaround here. And while I don't seem to have many of the symptoms of Oral Cancer, the pain I'm feeling daily says otherwise.

I'll wait for law‍ to reply and see where I go from there. :)
PunkyBrewster

I'm sorry you are going through this. You're right the not knowing the cause of discomfort is difficult to deal with. It sounds like you have seen all the right professionals who would be involved in diagnosing this issue. Has your Doctor advised what to do next? what to watch out for?

My father had tongue cancer but did not experience a burning sensation. It was the back of his tongue and it caused a cough. The ENT saw the tumour right away and diagnosed it. I'm wondering if it would be helpful to know the signs and symptoms of oral cancer so you can continue to monitor. Here is a link: Symptoms of oral cancer - Canadian Cancer Society.

You may also find it helpful to talk this out with one of our Cancer Information Specialists through our helpline you can call them at 1-888-939-3333.

I hope you get some relief soon,
Lacey

Thank you so much for your reply. I genuinely appreciate you taking the time.

So far I've seen 2 different ENT's a total of 3 times, and am seeing another one later this month. All of those times we did a scope into my throat, and nothing was seen. I also had a gastro scope to see if this was acid reflux related, and it wasn't.

I don't have a cough or really any of the other major symptoms that would normally associate themselves with cancer. The only real issues I'm dealing with are this tingling feeling on the back base of my tongue (right where the tongue goes into the throat), and then the left side of my tongue hurts either from a burning sensation, or just general pain. This all goes away at night when I'm sleeping, and then starts again as my day gets going.

The CT scan came back clear, and even said my lymph nodes were of normal size, which is odd because the left one is constantly swollen.

I've got an MRI setup for early April, which will hopefully shed some light. Living in day to day pain is a terrible way to live. I try to take comfort in the fact that it hans't really gotten much worse since it started a year ago, which seems untypical of cancer which only seems to get worse, but it's still very scary.
PunkyBrewster

I'm glad more tests are planned. I really hope you find answers. It's reassuring to hear that you don't have any of the major symptoms that point towards cancer.

I'm not a doctor but just curious....Have you seen any relation to food you eat and the tingling feeling? Have allergies been explored?

law
385 Posts
Hi PunkyBrewster
I am glad I was mentioned to you as oh, my, yes I had cancer at the base of my tongue,on the right side. Very sore throat in the tonsil area, and gradually I was unable to open my mouth more than a slim Canada Post Mail slot so I ate a lot of thin crust pizza back then (2017). I was diagnosed by an ENT, and it took 6 months before I could get a CT scan appointment.....which was not easily read, so then I waited another 3 months for an MRI...then to a 2nd ENT who gave me the final diagnosis and scheduled me for a biopsy asap. The biopsy confirmed I had a 'lump' on one tonsil which the surgeon removed, and a growth at the base of my tongue----both were sent to the pathology lab. Oh YIPPEE---- cancer positive, then I was given radiation appointments....blah, blah, blah and so on. I declined chemo, however.

Your situation sounds a bit more confounding....and you may want to inquire if it could be a problem with the nerve endings in your oral cavity and tongue or throat areas. I learned that the mouth has a huge amount of super sensitive nerve endings. As medical professionals possess quite confident personalities, asking about other non-cancer causes for your annoying and painful tongue and throat needs to be posed diplomatically. Perhaps you could read a few medical sites to let doctors realize you are aware of your health concerns and possibilities. Good sites are this one: CancerConnection.ca, also CanadianCancerSociety, Mayo Clinic, and Johns Hopkins Hospital....they are reputable-- whereas many Google searches are full of garbage.

Please keep in touch with us here , as you have done per MCoaster‍ 's recommendation ,as we are really supportive and I specifically want to confirm to you my interest in your progress!!
Hang in there, hopefully you will have more complete answers soon,
law
Thank you SO much.

You've all been very helpful.

The ENT I'm currently talking to has mentioned neuralgia (spelling?) as a possible culprit, however when I look up the signs of neuralgia it seems that they're based on sharp, almost electric like pains, where as mine is dull and constant.

It's really weird, what I'm going through. There seems to be almost nobody online who has had similar pains. I don't smoke, I don't drink, I'm only 40, and I'm generally in average shape. Not that this means I can't get cancer.

It's just scary.

I will say that there are a few weird things that point away from cancer. 1) When I eat the pain goes away. 2) The pain is completely gone while I'm sleeping, too. I feel totally normal when I wake up and it only sets back in about an hour or two into my day. 3) The pain is not always the same. The base of tongue pain is, but the other pains come and go. Sometimes my lymph node, sometimes my ear, sometimes under my jaw.

I do feel like with this happening for over a year now, and my CT scan being as recent as this past December, they should have found something. One would think, at least. The CT Scan showed no discrete masses, normal lymph nodes, etc.

Getting out of my head is the hardest part.
law
385 Posts
Hi PunkyBrewster
It must be nerve-wracking (no pun intended) to tolerate the odd pains, waking up perhaps makes you dread the day ahead, and have you visited your dentist recently? Perhaps there is a dental x-ray which may show jawbone TMJ ----it may be worth a try. You are likely concerned about the expense as well.
Some 'Mindfulness' exercises, although trendy, may assist you in alleviating the stress and turn your mind away from the un-localized pain.Deep-breathing may be helpful. I wish I had a crystal ball, and you do as well I imagine. Perhaps there are exercises for your jaw muscles which simulate eating since you mentioned the pain goes away during meals. It's a stumper, alright.
Have you inquired about your symptoms with a counselor, nutritional speech pathologist, or dental specialist familiar with oral pain?
Browse the Mayo Clinic website, searching for all vocabulary words which relate to the jaw, facial muscles, dental trauma, mindful meditations, sore throat pain during waking hours, food allergies and symptoms......it may alleviate your worries and at least keep you busy for a bit.
Keep reading, and searching and maintain contact with us here.
law

Hey law‍,

Sadly I've gone well down the dentist road. I don't have TMJ, or any other dental issues to speak of. In fact, my dentist can't figure it out either.

I also notice that there's a pain when I push on my larynx from that side.

When you noticed pain, was there a tumour already formed? My CT scan showed nothing, but the pain is just so constant.
MCoaster
418 Posts
PunkyBrewster

Good to see that you have really good suggestions from law‍ and Lacey_Moderator‍ both of whom have either been caregiver to in Lacey's case or who have diagnosed in Law's case with forms of oral cancer. Lacey made a very good suggestion about browsing the Mayo as there and at other such sites you will find information which is science based. Browsing the net I found would often lead me down a rabbit hole of greater worry at a time when I was already stressed.

Let us know how your search goes.

Take care.

MCoaster



law
385 Posts
Hi PunkyBrewster‍ ,
I stepped out for a few hours and I am just now replying to you.....I am at my wit's end to suggest anything you have not already been trying. I feel for you.
I had a tumour which evidently was growing at the base of my tongue,on the right side ,This was determined by my 2nd ENT doctor reading the report and looking at my MRI scan.following the biopsy. I guess it happened as I was getting more pain and increasing difficulty to open my mouth. I also found yawning to be excruciating---- and it was also impossible to speak properly.
Through all this, I also learned (from my speech pathologist) that a healthy larynx does move a bit from side to side...but it shouldn't cause pain--- unless too much pressure is exerted or there is a physical problem.
I hope you are able to pinpoint the status of your oral challenges and keep us posted here.
law
Thanks law‍.

My CT scan from December showed no masses, which is guess is a good sign. Last night my larynx was a little sore so I started pushing on it pretty heavily and now it's really sore. I guess I shouldn't do that, lol.

I'll keep you guys updated. I'm 5 weeks from my 2nd ENT appointment, and 7 weeks from my neck and throat MRI.
law
385 Posts
Hi PunkyBrewster
I am pleased and hopeful learning that your December CT scan showed no masses. At least you received some good news, eh! And within a month or so, you will find more clues after the 2nd ENT appt.and neck+throat MRI. It must seem like a century to wait for weeks. Be sure to let us know how it goes during your wait and after the scans are read.
But, your poor little sore larynx...ouch. Your pushing on it was perhaps too, too intense. You may want to let it rest for a day or two, and then see how it is feeling. Very gently is the key to our bodies behaving. Even folks who strain themselves in Zumba classes are doing a great disservice to their muscles. No Pain, No Gain----- that is a misnomer for sure!
A soft, gentle circular massage on either side of the larynx is about all the pressure it can tolerate.....and I have been advised by speech pathologists that the skin should barely be pressed....which implies soft and gentle pressure,indeed.See if that alleviates your pain somewhat. BTW---sucking on ice chips or eating ice cream may make your throat feel a bit better.
It's good you are eating and sleeping however. Have you thought to keep a daily journal of how you feel emotionally ,eating, sleeping, pain level on a scale of 1-10..1= tolerable to 10=screamingly horrid? It may be helpful to read your daily journal entries by the time you have your ENT and then your MRI.
Keep on keepin' on...
MCoaster‍ , Lacey_Moderator‍ , me,and all of us on this site are rootin' for you
law

Hello PunkyBrewster‍ ( great name!)

Welcome. I am so glad you reached out and have heard from some of our members already. I don't have experience with oral cancer . What I did want to mention is that you have had some fairly extensive investigation by way of tests and specialist visits. So far all roads are pointing to not likely to be cancer.. I would maybe focus on that as so far there is nothing to point towards cancer. NOt to say you shouldn't continue to investigate and your April appointments are part of that for sure. Just that try to focus on what we know right now and that is several tests and Dr specialists don't think it is cancer at this point. While I know it is easier said than done, try to focus on the positive and keep your self distracted while you await the new tests. Maybe keep a journal of activities or foods etc that seem to make it worse or better .

Reach out as you need.

Lianne
+ Reply