Hey guys,

So I posted a few days ago about some symptoms I have been having. I we tv to the doctors yesterday as my throat was killing me. Again I me ruins my tongue and all the other things that are going on, and again they won't consider cancer as it's really rare in my age group, it's driving me mad.

My tongue has a small cut or something on it on the side the swelling is on and today it's been bleeding and I don't know why, if I look carefully it looks like there is a thin white coating on the side of it, I'm worried it's leaukoplakia. It's also hurting a tiny bit, kind of like I've bitten it or its being pinched where the cut is.

I'm thinking of going to the hospital and demanding done kind of tests to be done as I'm fed up of being ignored because of my age and lack not risk factors. The thing is though I don't think the hospital will do any kind of tests whatsoever as I'm in the UK and most hospital visits (unless you are practically dying) are by referal only.

Even if I could land a referal it would take weeks to go through, and then a few more weeks if not months to get an actual appoinment. If I could afford private care I would pay for it, but I honestly can't.

I'm sorry I sound a bit whiny but I'm honestly terrified that it's cancer as my symptons have been going on for almost 2 months now and show no signs of healing, only seem to be getting worse.

Be diligent. You need to get to the bottom of this.

You are not whining, you are concerned about your health. More younger people are getting HN HPV cancer, which mainly effects the oropharynx 90 percent of the time, but can go to the oral tongue or occur there, sometimes. Most times symptoms are likely from other causes, but it's best to get checked out. If they don't do a biopsy, did they at least do a series of blood tests to see if anything out of range, maybe a blood culture, oral culture, and other tests not on the usual CBC, CMP, like for std's, which can occur and cause oral symptoms. There must be some type of tooth guard, wax mold, to put on your teeth where the cut is, to see if this helps. You may not know you are biting your tongue in your sleep. Stress can also cause ulcers. Otherwise, you just have to be persistent to get answers, and keep going back. Good luck.

Thank you both for replying.

I'm going to have a trip to A&E and see if they'll have a proper look at it for me and actually get a referal or see if I can convince them to get a scan or biopsy done then and there, though that is very doubtfull. I had bloods done about a month ago for my thyroid, liver, kidneys, glucose and a full blood count and they all came back clear.

So I had my tongue looked at, first was by a consultant who said he had no idea what it was do we t to get someone else. Now in not sure what he was but the concuktabtvivsaw said he was an expert, so I presume an oral surgeon on ENT. He said he doesn't think it's anything serious but is going to get me an appointment to have it properly looked at in the maxillofacial and orthodontic department at the hospital, and see where to go from there.

Blood is no indication of Head and neck C. And you are not too young. In the past two years since I've been here we've lost two 20 year olds to cancer, and have had several more diagnosed with it. Particularly tongue cancer. Nate was in his mid - 20s. Samantha was 22, and was diagnosed at 19 or 20. Dave (from Australia) was diagnosed at 18. None of them were HPV+, heavy drinkers or smokers. Dave is three years out now and just got married. And last year there was a young teacher who was in his early 20s also diagnosed. He's doing well I believe. But in younger people it seems to be more aggressive. And Sadly Samantha and Nate put up a brave fight but lost their battles.
Drs. Have to start listening!!

My cousin is 19 - and she had something going on for sometime with her neck. Her mom came to me and told me that they'd been back and forth to the dr. several times. She had a large node in her neck. They kept saying it was nothing and were giving her antibiotics. I told her to go back to the dr. they've messed around enough and that they should be seen by an ENT (theres a high incidence of thyroid and esophageal cancer in my husband's family - his other cousin was diagnosed with thyroid cancer at 28. Anyway, she got the referral went to the ENT and had a biopsy of the node and it came back as papillary carcinoma of the thyroid. So everyone is thinking - Okay so it's cancer but if you have to have cancer this is the best kind, non aggressive, (the least aggressive of the thyroid cancers) and usually very curable, so her parents are concerned but not totally freaked. I recommended my SO/ENT at PMH - it's a top CCC - he usually does only super complicated and unusual cases as he's a big wig. We weren't sure if they would take her - because its "just a thyroid cancer" but I told them to push anyway, because he is the best, and despite it being considered non aggressive - in my opinion she was unusual. most Thyroid cancers are 25 and up - though usually mid thirties or forties - but here's this 19 year old with it.

So she has two ct's and my dr says he'll take her on as a patient, and says to her parents - they don't really stage this kind of cancer (they do but usually it's so non aggressive that it's not something they bother with) - he also tells them with this cancer its all about accuracy.. not speed. But despite this he does manage to fit her in for surgery within 6 weeks of her diagnosis (I know others with other drs who've waited months as this cancer is not normally a priority). I told her parents to tell him to put them on a cancellation list - even though he rarely has cancellations. Anyway, she'd just had her preop and they called and moved it up to last friday (there was a cancellation). He had said from the outset that he was taking 60 nodes - total - from both sides, and her thyroid - based on her scan. It ended up being a 7 hour surgery, and this non aggressive cancer was all through her neck. He told the parents he was chasing it down her arm, around her vocal cords, and up behind her ear and into her chest area. It was everywhere. He doesn't even know how many nodes he removed. He told the parents I didn't stop to count, I just followed the cancer. He will know when the final path comes back. He also removed her parathyroid as they/it couldn't be saved - and when I did finally look up her staging based on the description of the involvement I was given, she's an advanced stage IV. I am so glad she didn't see someone else who would have made her wait much longer. My point is...

NOT EVERYONE IS STANDARD.

I didn't tell you that to scare you. I told you that because some people only look for standard. "The NORM" well we are individual biological entities - we all respond differently - so just because it doesn't normally happen, doesn't mean it can't.

hugs and push.

Hey Cheryl,

Not gonna lie, that kinda scared me, quite a bit. Obviously I'm fully aware I could have it and I'm leaning more towards me having it than not. I'm getting frustrated with doctors not taking me seriously given my age and lack of risk factors. Seeing as my dentist seems to be the only one out of the lot wanting to keep an eye on it, I'm hoping when I see him next Tuesday he will refer me to get a damned biopsy on it.

The first doctor I saw today said that I should be worried and it would be best to get a biopsy done by an oral surgeon, but changed his mind when the other one said he thought it was nothing to worry about.

Something else, I keep getting this weird sensation in my tongue, it's a mixture of tickling/itching/burning really bloody annoying. I just want a freaking doctor to listen to me and give me the proper procedures.

I'm not sure if it's a good idea or not, but in thinking of....exaggerating my symptoms a little to see if that will push then a bit more to give me the proper tests I'm in need of. I have another appointment with my GP Friday, so I'll see if I can get through to her.

Hi Jade, I can't add much to the advice you have already had. Just want to say hello from Edinburgh. You have the right attitude for dealing with our health system here, which I think can be harder to confront than across the pond where getting second opinions is the norm. Some important advice that is often given here is BE YOUR OWN ADVOCATE. Too many people are happy to put their head in the sand and accept the reasurrances. The first GP I saw told me I was an unlikely candiate for cancer, being 51 and female (she obviously hadn't heard of HPV16), she advised me ask my dentist to have a look and luckily the dentist noticed that one of my tonsils was higher than the other. I'm not sure why the GP hadn't noticed that but the 2nd GP I saw referred me imediately to ENT, but this delayed the whole process and might have reduce the intensity of my treatment if I had not had node involvement.

The other really good advice given here is that you don't have cancer until a biopsy says so, so try to keep a calm area in your head telling you that there is probably a much higher chance that this is not cancer. Try not too panic.

Let us know how you get on. Sally

Hey Sally, thank you very much for replying.

Yes the health system here isn't exactly ideal. Of course we are incredibly lucky we have the NHS, it's just not run in exactly the best way. The main reason I'm so sure is, that if I put all my symptoms in Google, all that comes up is cancer, that and the fact that I've never had a problem with my mouth before, scares the hell out of me. Well there are a few other factors, like I'm in no way immune to it and that I keep seeing or hearing about cancer practically everywhere I look, and I keep thinking it's some kind of sign that I do have it, the fact that my star sign is Cancer doesn't help (which is crazy, I'm pretty skeptical and don't even believe in things like 'signs').

I hope my doctor listens to me Friday and will actually do something about it.

Hi there... I really didn't want to scare you.. I just wanted you to make it clear to the dr. that there is a whole new demographic out there that are not part of the NORM in terms of those who develop oral cancer. I know - I was one of them. While I wasn't in my 20's I was female, non smoker, non drinker, HPV negative, and a vegetarian... They didn't think it could possibly be cancer. It took me 4 years (not kidding) of tongue issues to get a proper diagnosis. and I'd had 2 biopsies. The first one came back negative and the guy didn't push me to come back if it didn't get better - because I am not the normal patient... older, male, heavy smoker/drinker. Well surprise two years later - and the tumor was stage 2 by then. Thankfully it was well differentiated, but it had moved into one node and because of that I ended up with rads and chemo too.

Also I am well aware of what your system is like. I'm Canadian... same system. Just different people in charge. I have a fantastic GP who is an advocate that's why I got treated so well and by the dr. of my choice.

take care and hopefully Friday they do something.