Hi Everyone,

Apologies if this is in the wrong place on the forum.

Well first let me introduce myself...

I am a 25 year old woman, a non-smoker, and (for the most part) a non-drinker. I've probably consumed alcohol a handful of times over the past couple of years. I am not sure about my HPV status but think I could well be infected given my symptoms...

I was basically just hoping for some advice and I know perhaps it seems like the odds are that I don't have oral cancer and that I'm just a hypochondriac given my age, etc, but my concerns are very real and I would be so very grateful if you could help me out a little bit.

I've been having some rather worrying symptoms for a while and I can't seem to get health professionals to take me seriously. I sort of feel like I might be being overlooked because of my apparent lack of risk factors and am becoming increasingly frustrated. My symptoms are as follows:

-Swollen lymph nodes- all of them seem to be coming up on the bottom part of my neck on the right side. They are all varying sizes but probably coming up to the 1cm mark if not over. Most of them can be rolled around the skin and are very firm and hard.

-Mouth lesions- I have two warty type growths on the line which connects the hard and soft palate, on either side of my mouth. I also have numerous warty-looking skin tags underneath my tongue. All of these things have been there since around June of this year. I can't really tell if any of them are growing.

More recently, a white blister has popped up on the buccal mucosa on the right side, which is quite sore and rough-feeling. I also have glossitis on my tongue and it always looks pale and fissured.

-Headaches, earaches, neckaches, etc.

-A popping noise when I open my mouth wide which sort of sounds like it's coming from the back of the throat. I'd describe it as a sort of 'dripping' sound or like air being pushed past something (which of course makes me very concerned that there could be some kind of growth back there).

Again, I'm aware that I probably sound like a big hypochondriac and I can assure you that I wouldn't be massively concerned if it wasn't for the length of time I'd had these symptoms or for the swollen lymph nodes which seem to 'seal the deal' as it were.

Does mouth cancer tend to present in this way (i.e. multiple lesions)? Should I be pushing my dentist for a biopsy? I live in the UK and so can't refer myself to ENT or anything like that and I can't afford private healthcare.

I've been lurking around this forum a lot recently and some of the experiences I've read about have almost moved me to tears. They make me realise how weak-willed and pathetic I am. I want to be strong, but it's so difficult when I'm so worried

I would really appreciate any advice anyone could give me on how I should proceed with this.

Hi LT:
Well, you can't argue that you don't have symptoms, real symptoms. To me the question is why is the medical community so uninterested. Are you seeing the same doctors in the same clinic every time you go. If so, maybe a visit to a different clinic is in order, ie a 2nd opinion of sorts.

Do you have a long term history of going to the clinic on a frequent basis and then finding out nothing was wrong. If so, maybe you've earned a reputation as a hypochondriac and the doctors are now skeptical of everything about you.

None of us are doctors on this forum, so we can't give medical advice. But, what we can do is tell you what each of us had and what they did to treat it. Of course all patients are different, so they might not offer the same treatment to you, but something totally different.

Do you know anyone in the medical community personally, such that maybe you could discuss it off the record with them like maybe over a cup of coffee, the idea to see if you have a bad rep.

I'm 3 weeks new to the forum myself, so I don't have the experience to give you the answers you seek. I'm hoping others fill in those gaps.

good luck LT

Tony

Hello, and welcome!

First of all, I do not think you are hypochondriac at all, so please relax. You have to be your own best advocate and insist that doctors do more tests.

I am pretty new here and not an expert by any means, but what you could be anything. It is never cancer till it biopsy confirms it.

I would push your dentist for a biopsy. I see what you describe about your insurance, but could your regular doctor refer you to an ENT? Seems like it would be worthwhile at this point.

Good luck!

First off what have your primary docs said all these things were?

When did you last see them and what did they tell you to do?

Cervical HPV does not travel through the body to infect the oral cavity. The virus must be introduced to each area from outside sources and there presently is no reliable oral HPV test except a biopsy of cancer cells.

Some of your symptoms could be cause for alarm but IMO you need to be referred up the food chain and get to an ENT so keep pressing.

Hi,

Thank you all so much for your replies.

I've been to SO many doctors over the months, I can't even count. None of them seem concerned by the lymph nodes because they're 'moveable' and don't seem to be growing. The 'warty growths' in my mouth have been passed off as 'ulcers' by one doctor and then another described them as 'bony growths' because they do seem to be symmetrical on both sides of the palate. The headaches and earaches are intermittent, as is the clicking noise, which never seems to occur when I actually want to show it to anyone! I've been to dentists and he didn't even seem to comment on the growths, just said I had some 'toothbrush trauma'. I have another appointment with him next Thursday though so am going to press him...

Basically I've been diagnosed with 'health anxiety' and whilst I'm not refuting that, I really think there IS a reason for this anxiety. Before all of this started, I hadn't been to the doctor for six or seven years so it's not in my nature to be like this...

I think the main reason the doctors are unwilling to pursue is because nothing has come up on blood test results- FBC, ESR and CRP are all completely normal. I wish doctors would take notice of symptoms rather than tests

IF (and that is a HUGE IF) you would have oral cancer the markers would not appear in a blood test. Its not like other cancers that will easily appear. It also doesnt normally come and go or look symmetrical on each side with multiple growths. Many of your symptoms are not how oral cancer usually presents itself but a few are.

Not all dentists are able to identify oral cancer or have even seen it in their careers. This type of cancer needs a biopsy to determine what it is, they can not visually diagnose a patient although many experienced with OC can suspect what is going on prior to the biopsy. Usually an oral surgeon or ENT is who would take care of the biopsy but I have seen a few dentists do them as well. Use caution in selecting a professional, some ENTs focus on putting tubes in childrens ears while some oral surgeons specialize in pulling wisdom teeth. If you still have your wisdom teeth, this could be related or even if you have had them pulled you could have TMJ issues (the intermittent clicking sound).

I wish I was able to help you more and steer you to the right place but the only thing I can really do is give you this list and wish you well with your quest.

Best Hospitals Worldwide

It will help ease your anxiety to avoid "Dr" Google. If a person looks hard enough even a 70 year old male can get their symptoms to find themselves to be pregnant when using the internet to get self diagnosed. Also keeping busy helps the time to pass quicker as this is likely to take a few weeks until you have any type of diagnosis confirmed.

Best wishes! Hope its nothing serious!

Thanks, Christine.

That's what's so frustrating. The fact that the blood tests have come back normal actually made me MORE worried rather than less because some kind of infection or inflammation would provide a good reason for all of this...

I think my dentist is more of a cosmetic dentist so not sure if he's familiar with oral cancer or not. I think if he doesn't refer me or do SOMETHING this time, I'm going to look for another.

Just out of interest, does anybody know of any tumor/blood markers that COULD be high with metastatic oral cancer? I've had a few private blood tests done recently and my finances could probably stretch to that. Is CEA generally raised in these cases or not? Or how about SCCA? I just feel that if nobody is going to biopsy me based on my presenting symptoms alone, is there any blood test I could get done to SHOW them that oral cancer could be a real possibility. I'm not holding out too much hope of this being the case...

I just feel like I'm rotting away here and nobody is doing anything about it : (

Really though, thank you so much for your help. At least I know there's somewhere I can come to talk things through if things do turn out bad...

Hi there... oral cancer can not be picked up in a blood test. Metastatic oral cancer if it has spread - say to an organ like the liver - would show a problem with the liver but it would not be specific. That said - lets take a step back.

Usually oral cancer doesn't present itself with multiple locations. If it does - it's usually quite advanced. From what I know of most people's cancer there is generally a primary that grows within the same area - gets larger etc - and then it tends to move into the nodes. It doesn't often happen bilaterally in the actual oral cavity, though it can be bilateral in the nodes. This is not to say it can't happen - it's just rare. (and oral cancer is rare to begin with - just to give you some perspective)

Now this is not to say that you don't have Oral cancer (though it is unlikely) just to say that maybe ALL of those things may be something else, with maybe one area that is oral SCC (you can definitely have more than one thing going on with your health)

My advice beyond - remain calm - is to go and see an ENT who has a solid history of treating oral cancer. Tell them everything that is going on with you, and make it clear you need answers. If they give you a prescription for something take it and if the problem isn't solved go back to them until you get an answer.

Lack of precursors for this disease no longer means anything. I am a vegetarian, do not smoke, do not drink (never have) and I have never done drugs. yet I had a 2cm tumor inside my tongue - and it was painful!!!! It had been a problem for almost 3 years before I got my dx. My dr. new about it, and the first ENT missed it. So be consistent with our concerns, and be willing to do what they suggest. The lesion concerns me more than anything else you've mentioned - since nodes swell if you have something going on, a disease, a flu, a persistent infection so they are non specific.

We have had quite a few young people with no precursors lately. So that is no longer something that should be heavily considered when making a DX.

take care and welcome.

Thank for the reply, Cheryl.

That's the thing that I think has impeded this all so far- the fact that I'm not in a recognised risk group. If I was a sixty year old smoker/heavy drinker, then I'm sure all of these things would have been treated with more concern. In fact the first time I presented to the doctor with a swollen node, he asked me if I was a smoker. I feel that when I said 'no' he automatically ruled out the idea of cancer. Maybe next time I go I'll tell them I'm on forty a day and see if that changes how they treat me...

I really do feel that if this IS oral cancer, it probably is advanced. I can even feel a rough area in the floor of my mouth now. I feel like it's taking over my mouth and I don't know what to do besides try and get an earlier appointment. I've already been waiting and worried for so long and the idea that I may have to wait for biopsy results and stuff as well is just too much to bear. My whole family and my boyfriend have had enough and think that there can't be anything majorly wrong because it would have showed up in blood tests. I feel like I'm alienating everyone I love and have this heavy burden to bear all alone. I know how self-pitying that sounds but I just feel that if this IS what I think it is then it's probably so advanced that I don't have a chance...

Saying this, I'm overwhelmed by the help and advice I've had on this forum so far. Thank you all so much.

Hi LTww,

This is a great forum and full of information and support. As we're not doctors, obviously we cannot diagnose your situation. That being said, what you described does not present itself like OC. And yes, your age and stated lifestyle supports it. There are always exceptions to the rule but they're few and far between.

The system in the UK is different and as you've been to A&E and your doctors, been tested etc., it's a positive sign that they're not concerned. You're having some oral health issues but they're not presenting themselves as typically OC would.

Being that you stated your HA issue, what you're describing definitely lines up with anxiety symptoms. The jaw, neck and ear pain is synonymous with TMJ.

Truly, you are your own best advocate but you can be your own worst enemy too. Be persistent but also understand that after tests and several professional medical opinions, you may be just fine

Good Luck!