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.

I was diagnosed at 24 - my symptoms were similar to yours; however, I am pretty sure mine started out as leukoplakia and if i hadn't ignored it for so long it may not have even turned into cancer. i had the symptoms for over a year before i finally got it checked out and diagnosed. so catching it early is key! and i'm still here and kicking, so it is not a death sentence. if you have it, know you can beat it and fight it, but also know it really is uncommon in our demographic, so there is a very large chance it is nothing! if it is something though, i think being young makes it easier to bounce back. good luck!

Hi again,

I know it wasn't your intention to scare me at all. I would print a bunch of stuff off and show her, but my printer's decided it won't work right now, and I don't think she listen anymore anyway.

It's great that we have practically free health care, just not so great that the people who are I charge of the systems, are that great at their jobs. In the end it always comes down to money.

I completely agree that doctors need to learn to stop just looking at people with high risk factors, and those who fit into a normal demographic, as they are NOT the only ones who can get cancer.

Whilst it's not something I ever want to be told of course, I'm not quite as scared of being told I have cancer, but more because it's oral cancer and looking at the 5 year (or even 1 and 3) prognosis percentages online; it's so low. I think the fact that I could have something that has a high chance of ending my life in under 5 years, absolutely petrifies me. I know in jumping the gun a little, and I'm sure there are many people who have had some form of oral cancer and are still alive 5+ years, it's just so much easier to focus on the negatives rather than the positives.

The things your own body can do to you, both mentally and physically is terrifying.

Hi Emily,

I'm sorry you and everyone else in this forum have had to go through what you have.

I'm hoping it does turn out to be something benign and I can stop worrying, as I'm not helping myself and it's making me feel sick just thinking about it. Whilst its more likely it's something completely innocent, the fact that I'm fully capable of having cancer is what keeps playing through my mind and is now fully stuck in there, which may it may not be a good thing; depending on what results I get a when I do finally get properly tested.

That and the fact that I do not get ill, have never had a problem with my tongue before and only ever had a sore throat for 2 weeks at most, and that time I had strep throat (when I was about 14 I think).

Jade

I am awaiting biopsy results, its been a terrible two weeks but i guess at least they are checking. The maxillosurgeon i saw said it doesnt look suspicious but as i am 31 with a four year old i have been imagining the worst and how i would deal with it. My life has always been tragically eventful and i think its that i feel i just cant take anymore. And when i quit smoking for two years i used to crunch those stupid nicotine lozenges around my mouth and have been paranoid about that as i used them for two years and had canker sores and a terrible stomach. That all cleared up but since then i have panicked about it. My scare is an ulcer on floor of mouth under tongue been there i think for about two months. And i have since the biopsy noticed a small spot in gum jawline. Have been losing sleep crying reading everything under the sun. This site is full of the most admirable and brave people, i am amazed and its so good to be able to share concerns but so brave that people who are suffering from oc are reaching out to others. The biopsy was painless and healing is good. Btw i paid two hundred pounds to see the consultant who kindly put me back through the nhs system for the biopsy. Local doc suggested a stone and gp said just an ulcer but the surgeon deals with this all the time and gets right n the case, might even be able to rest your mind a bit good luck. I hope i get some good results tomorrow xxxxx

Jade

Just re read your post and that you said you cant afford it. Seriously, go the the doc show them your tongue and tell them to want a specialist to see your tongue so that they can determine what it is and thats that. Its your health, dont be talked out of it. Sometimes we have to be firm with the doctor, and i mean that with all due respect, you need answers and for that a specialist.

Hey Tamsin

I'm sorry to hear what you are currently going through. I'll keep my fingers crossed that you get the all clear and won't have to worry any longer.

Indeed the people on this site who have been diagnosed or are supporting those who have are incredibly brave and amazing for being able to fight like they have. If my fears come true, I'm honestly not sure I could deal with it very well at all.

My doctor knows I'm worried about my tongue but keeps passing it off, as for some reason she thinks I should be throwing up and being extremely tired all the time. But those are not really symptoms if this type if cancer as far as I'm aware, and evening they are it doesn't mean that they are symptoms I would have. Hopefully the doctor will listen this time though as I'm worried it soread to my throat as it feels different, and I can feel something in it (if I stick my fingers down it, which I do sometimes when I taste blood to see if there is any) that's not supposed to be in there, or even if it is it's changed in how it feels.

I suffered from fatigue (and still do but due to the treatment) before I was Dx'd and treated. I also had swollen lymph nodes that continued to grow, especially in the two months it took between being Dx'd and the start of treatment.

It seems to me that some of the things you're reporting would not go away or come and go. I had no pain, sore throat or issues eating or swallowing. However, prior to my surgery in February, I began to feel a fullness and discomfort on the left side of my neck where the cancerous lymph nodes were. It continued to get worse. It was due to the size and them pressing on nerves and vital structures.

It's very obvious this is causing you a great deal of stress. Sometimes you have to be your own advocate in a situation like this. There's nothing wrong with getting on your soapbox and demanding they do something and refer you. The old saying "The squeaky wheel gets the oil" may just apply in this situation.

"T"

Hello again,

Yep most of the pain I have comes and goes, and the severity and type of sore throat changes. By type I mean, sometimes it feel like a normal sore throat; varying in levels of severity, and then it feels like an mild ache deeper in the tissue of my throat. It's all very strange.

The tongue swelling is constant though unfortunately, and that's where my main worries lie at the moment. That and the on off (as in can be hours or days apart) mild ache I get at the top of my neck around my jaw on the right hand side.

It strange that my symptons seem to change everyday. I can go to sleep with a pain somewhere and it will be give next morning and may or may not come back so write during the day. Though I do have either a dry or achey throat whenever I wake to recently.

Hoping the doctor will have a thorough and proper check Friday and the. Give me the referal, whether or not she can see anything; as it really does need to be properly checked by a professional, no matter how scared I am to actual have proper tests, if it is cancer then it's not going away by itself and ignoring it would just be silly.

There's a reply on CSN you should read. I think it will help a lot!

"T"

I just now looked at it and sent a quick reply. Though I think I should be off to sleep now, I don't need to add the symptoms of sleep deprivation into the mix as well.

I mention a blood test for possible indication of infection, anemia, neutropenia, which can cause mouth ulcers. Actually, there is a Squamish Cell Carcinoma Antigen test, but should not be used as sole diagnosis, but for further investigation. CEA, mainly for colon cancer abd rectal, and is used in others cancers too, including HNC to monitor recurrence, and after surgery of tumor removal, but may be that common. I'm having CEA done with my next blood test next week.

Quick question as I'm trying not to Google anymore (I wonder how long that will last).

What else apart from leaukoplakia, could be why the side of my tongue is a bit white?. It comes off a bit if I wipe it with my finger but not completely and it's on the other side a little now as well, though it's not as much and harder to see.

Could be Thrush but it would be painful.

As David mentioned, could be thrush, which is a fungal infection, basically a yeast infection out of control, if it can be scraped off. They can do an oral visual to diagnose of do a culture from the scraping. Thrush feeds on sugar, alcohol, and yeast, so avoiding those help. The drug of choice is fluconozole, cltromizole. Some say taking pro biopics, eating yogurt helps, , but some are against adding more bacteria to the body. Show your doctor.

Thrush could very well be a culprit an infection, of some sort - or a mechanical injury when we skin our knee we scab, on an injured tongue its a milky white patch that eventually goes away when the area is healed. Also lichen planus.

Speaking of which someone mentioned leaving lichen planus too long to be treated and this leading to cancer. I have to say don't beat yourself up. Seriously. As far as I know they do not know what causes lichen planus, therefore treatment is not really a happening thing. I mean unless there have been recent discoveries since I was diagnosed - I was originally told lichen planus, then the biopsy confirmed cancer, but I did a bit of research into lichen planus, and from what I read treating it is a crap shoot. And not all lichen planus turns into cancer.

Hugs.

They do not know what causes this. I think it's very low, according to some, in the 8% range, to manifest to cancer, and taking five years.

Hello everyone, thanks for the replies.

I will ask my doctor to refer me to an ENT tomorrow morning when I see her, I'll update after my appoinment to tell you how it all goes, hopefully she shouldn't object.

Today my main problem has been with my throat, it's very strange sensation I get. It feels kind of inflamed and the sensation of something being in my throat is worse, like it's gotten bigger; and it's all in the lower part of my throat, where a doctor cannot see with just their eyes and a light (around where the adams apple would be I guess), I have a spray the doctor last week suggested I use (Difflam), and it helps a little but not much, it kinda stings when I spray it down my throat.

My tongue is also very strange and it's done this once before, I'm not sure whether it is doing this it not; or if it's just my imagination. whilst the swelling has never been hard as such and I've always been able to push it in like I can on the other side, it's been fairly firm. Today though it feels softer than it has in the past few weeks, I don't know why or even if it is softer or if its just my mind playing tricks on me (probably). I have also got third sensation of something being sticon on my tongue, but I'm pretty sure it's the tastebuds right on the edge of my tongue rubbing slightly, where the swelling is; it has done this before in both sides of my mouth though.

I have had a white coating on the top of my tongue for years (since I was about 12), but it comes off when I brush it for the most part. I did see a dermatologist about it and he said he thinks it's geographic tongue.

Anyway, I really do need to stop with the Googling, as I've been told as it really really doesn't help at all.

No... googling is bad... ;o) good luck tomorrow. Some people have high calcium levels and this can cause a white coating on the tongue. hugs.

Thank you, I'll probably need it.

I'll admit I'm still scared from what the first doctor I saw at the hospital yesterday said (I did mention that here didn't I?, I'll have a look back at my posts and see). I think it was the way he put his hand on my shoulder and said in a very serious tone that I should be worried about it and should get to and oral surgeon and have a biopsy. Something I already know, but being told that by a medical professional is very nerving; even if he did change his mind after the other guy came in, had a look and said he thought it was nothing.

Another thing, do allergies come up in a full blood count, or do I need some other type of tests for that?. If so I might ask for allergy tests too as I have never been tested for any allergies so always so no when asked if I have any, when I very well could; and that could be part of my problem.

I'm not sure what my phone is up to but it keeps messing with my posts, changing words.

Chillax Jade....the doctors will give you some concrete info very soon. Don't jump to another health issue before you ride this one out.

Do you brush your tongue? Many people don't and many people should. We use various types of scrapers and brushes this side of the pond. It is common to have white residue on your tongue and it could be worse with salty or acidic foods.

There are a million possibilities of what you are dealing with and only maybe one for sure. Work the doctors to find the one thing to worry about. Fear and stress will throw the body and immune system into confusion and bad things can come from that.

Rest up and push forward for the biopsy and see where you are then.

Hi,

I do brush my tongue, though not with a tongue scraper but something on the back of my toothbrush that is supposed to be for your tongue, though I don't think it does a ver good job really. I think I'll see if I can get a proper tongue scraper from the pharmacy next door to the doctors tomorrow.

You're right, worrying just makes things a whole lot worse. When I was having heart palpitations a few months ago, I got all kinda of silly thoughts in my head and I couldn't sleep properly and felt incredibly nauseas almost constantly. I still don't know what was causing the palpitations, they just suddenly stopped one day.

Hi Jade

Ive just been through a horrible two weeks awaiting biopsy results on my long standing ulcer and today got results that it is negative for cancer. I too googled and just couldnt put the computer down. I was scared stiff and have cried with fear.

I just hope that you will see a surgeon soon because they will have a look and decide what they think even before the biopsy and hopefully this will put your mind at rest. My surgeon said mine didnt look like cancer but hey i still freaked but people kept telling me to keep that in my mind and sometimes it helped.

I still have to go for follow up and a neck ultrasound as i too have some strange discomfort in my throat, and also near the ear. So not feeling completely out of the woods. But i feel like ive just been through the process you are going through and want you to know that you should be ok. My aunt had two mouth biopsies and one was a wart and the other a polyp. Strange things pop up in our bodies eh. Anyway i can talk about this with hindsight now but wish you all the best.

Xxx

Jade

It sounds like your doctor is not the doctor for you. I am in uk also and use nhs services. Sometimes we dont realise what our rights are as patients but i want you to know that you are able to request to see another doctor and no one can tell you that you cant. We are very fortunate for this. If your really unhappy you can even attend another practice. Please get yourself a doctor that listens to you as you are clearly frightened and that a horrible place to be. I suffer from terrible health anxiety since a year ago and i finally have a doctor that listens to everything. She treated me for anxiety whilst checking my concerns regarding physical health where necessary and she used to get me to write a list to go through with her so that no questions would be left unanswered. There are some amazing doctors that will do this for you and i dont know where id be without her this last year. Some doctors have just looked at me like im a nutcase and rushed me out the door. Try another doctor until you meet one that you can build a good relationship with at it is so important.

Xxx

Hey,

I just saw your post. I'm so happy that your results came back negative for cancer and hope the rest comes out fine too, I'm sure it will .

Thank you for your words. I've been told by everyone who's looked at my tongue that it doesn't look suspicious, but seeing as they can't tell me what it is I worry. Hoping my docs appoinment will go well tomorrow and I'll finally get a referal. I've not actually asked for a referal yet so hopefully she'll give me one with no problems as I won't be able to put it to rest (if it is nothing), until I have it properly checked out.

I'll update again tomorrow after my appoinment.

Thanks jade, good luck, not knowing things is horrible but as they say looks ok that sounds good, good news so far. Xxxxx

So I've been to the doctors and she said she wants to hold off on the referral for now and wait until I've seen my dentist (Tuesday), I have to go back to her after I've seen him and then she said that depending in what he says and how I feel about it, she'll decided what to do about the referral then.

Something to add quickly. I know every cancer is different and I may not have cancer, no matter how much I've convinced myself I do.

What are the chances that I'd have it in my tongue, throat, right tonsil, cheek and lip all at the same time? (I'd assume if that's the case I have a pretty shitty prognosis), but it's newly a curiosity as my lower lip is (and has been for a while) swollen in the left side, I noticed it about a month ago but it may have always been like that, but I don't think it has. Same with my tonsil which I noticed was bigger than the left one today.

I'm picking at every little thing in my mouth at the moment, and it's driving me mad. I just cannot seem to stop for some reason.

They have percentages for primary, and distant cancer at presentation is like 10 percent. If HPV negative, and may have been caused by smoking, other carcinogens, there is such a thing as field cancerization, metachrounous and synchronous cancer in the nearby structures, aerodirgestive track, which percentages I don't know off hand.

Cancer in general some cancers are low compared to the population, some rising , but many decreasing. Some other cancers are higher, HNC ranks 5th or 6th, but everyone fears cancer one time or another. I did, and eventually faced my fears, and not afraid anymore. I'm not a victim or survivor, I'm a fighter. You don't know how strong you are until you need to fight for your life, no other choice.

Actually, cancer is not easy to get, needs like 100 changes, and like 10 different mutations. The immune system fights off dancer, and not even easy to metastasize to different areas, due to the barriers in the body, but some still do, and it's frightening, and needs a strong willed person, and support like here.

Good luck, relax, get hobbies, have fun, enjoy life, like it's your last day, everydsy. The morning is best for me just waking up.

Quick question.

if someone has a lump or growth cut off any part of their body, whether the doctors thought it was something dangerous or just removed it as it was irritating, do they have to check it for anything malignant anyway?.

I ask this because when I went to the hospital on Wednesday, the doctor who looked at my tongue and said he thought it was nothing to worry about, said that if it was irritating me he would make an appoinment to get it cut off. This is a small lump/spot on the swelling. So I'm wondering if I do get the small spot/lump thing cut off, if they have to check it just incase it does turn out to be anything dangerous, or if they just would normally just dispose of it straight away?.

Is this a CCC, and ENT? I wouldn't let anyone cut anything off until confirmed by a biopsy if it's cancer,of not, like from a punch, incisional of excisional biopsy. Even if it's a small lump, and lump sounds big, it can go deeper into the musculature, and won't really know until surgery is being done, poseibly needing a graft, aftercare. The other thing, if not done properly, may hace a risk to spread disease.

I think it's an oral surgeon at the hospital. As it takes a while for things like that to go through as they are not worried, I doubt it would be anytime soon anyway. Certainly not before I should be able to get myself in to see an ENT and have the tongue biopsied. Assuming my doctor will give me a referal this time, after I've been to my dentist on Tuesday.

If they remove it request a biopsy on the tissue

I will do, just all depends on who I get to see first. I really don't want to have to wait for much longer as I'm sure my tongue's worse now, the whole right side feels bigger then the left and very very slighty firmer, but again you can't physically see any differences. I know it's changed as over the past few days I've found myself biting my tongue a lot easier than I did in the past. As though it's slightly in the way sometimes.

Well that was much sooner than expected.

I got a letter through today from the hospital with an appoinment to see the oral surgeon who is going to have a look and possibly cut a small lump/spot thing off my tongue depending on his evaluation, hopefully I he'll biopsy it and then hopefully I'll have a better understanding of what's going on in my mouth. It's still a little later than I would have liked, but a lot sooner than I expected it to be. 24th June.

great news. just keep moving forward, one step at at time!

I'm just glad that its a start towards finding out what is going on with my tongue, and seeing whether or not my fears will be confirmed. Hopefully nothing will change leading up to the appointment, it's not too far off thankfully.

Good luck jade. Xxx

Thank you.

I know getting it tested is the best thing that I can do right now, but at the same time I'm hesitant to do so as I'm so scared I'll get the results back I do not want. It's like some part of my mind is telling me to ignore it and it'll go away and if I don't get it tested and no one tells me it's cancer then but obviously can't be. But I know that is an incredibly stupid mindset, as it very well can be cancer and not getting the proper tests and essentialy treatment if it is cancer would quite literally be a death sentence.

Or as a television psychologist on this side of the pond would say, "how's that working for you, Jade?"

By delaying you end scouring the web, asking on forums...the mind takes over and you end up with nothing but stress.

I think we all have done that once or twice in this journey. I am sure hoping it is nothing or at least not cancer!

It's very true and very scary. But you are facing it and doing what you can which is best. Think of it this way. If it is bad news then you are better able to prepare for it early in the course of the disease rather than having to face it when it is more advanced and more terrifying.

Hey guys,

I have my dentist appointment in couple of hours so I'll have to see what he says about it too, it's not gone down at all so that's not exactly comforting; but at least he is actually looking at it and not just passing it off as nothing like most if the doctors I've seen have. They are passing my sore throat off as anxiety too, but I do not agree with that at all as it feels different from any sore throat I've ever had and occasionally makes me sound a bit croaky.

I just want a diagnosis ASAP, all this worrying is driving me mad. Not that my mind will be at very ease if I get bad results of course.

So I saw my dentist today. He said he doesn't think it's anything to be worried about still, but said as he is not a specialist he can't say 100%. He said if I wanted I could have a referal to a specialist, so of course I agreed and he said that he'll right a letter and send it off, but is not sure how long it will take to get an appoinment; between 2 weeks to a month, it's not straight away but it's something. That along with the other appoinment I have, hopefully I can get a diagnosis one way or the other soon.

No news is good news! Sorry it's so difficult for you to get a referral to a specialist. I'm glad I don't have to do that, and would be anxious too.

It's certainly a pain, but at least we are getting somewhere now; even if it has taken longer than it really should have.

Continue to be diligent.

Hi Jade,

Glad to hear that great news from the dentist. With all due respect, I'm not doubting you are experiencing symptoms that concern you, but several doctors and now a dentist found nothing that concerned them. Could it possibly be that you're suffering from a little bit of health anxiety? In the mean time, while you're waiting for the system to authorize appointments, perhaps a conversation with a counselor concerning your fears would be beneficial.

Positive thoughts and prayers

"T"

I think you may be into something with the health anxiety, though I do genuinely believe my physical symptoms are real as they are why I started worrying, I do think they feel worse then they may actually be due to me constantly focusing on it and worrying.

I have been to quite a few doctors now (6 to be exact), that's quite a few and I've had mixed reviews from all of them, with the majority thinking its nothing to be too worried about and the 1 telling me that it's been there for a while and should be worried. For some reason it's just easier to focus on the negatives, which is not a good thing at all.

Jade

I hope you get it looked at soon as you need to put your mind to rest. I had my biopsy and it proved negative for cancer, no one was surprised but me as i too focussed on the negative. Now i am stressed about the follow up as i have a small bump in my gum thats not even visible and my gp thinks its nothing, a gum boil or something similar. But i am still stressing to some extent. I do btw have terrible health anxiety which id never had until last year.

Hopefully you can get it seen by ent or a maxillofacial surgeon. If you do find out that you have other fears about other illnesses in the future make sure you get some counselling etc ad heath anxiety is terrible, it takes over, and makes life frightening and unnecessarily unhappy which it shouldnt be.

Hope you get peace of mind soon jade xxx

Hey Tamsin

I think I said it before but I'm very glad you have the all clear. I have a bump in my gum as well in the left hand side, you cannot see it at all. But I think it's left over from a bad infection I had on the left side of my mouth a couple of months ago , that I had a root canal for.

Well my appoinment at the hospital is in the maxillofacial department, I'm just worried I won't be able to get it biopsied as you cannot physically see the swelling (though the right side of my tongue is raised higher than the left slightly, and I don't know if it's normal for me or not), and can only really feel it if my tongue is in its normal position, or stuck out straight not to the opposite side of my mouth.

Since taking the meds the doctor gave me for acid reflux (omeprazole) my throat feels a lot better, not completely as the sore throat and feeling of something stuck is still there but is much lessened. Well the sore throat is anyway, the stuck feeling is still pretty noticeable.

I hope this doesn't seem harsh but if you know you have health anxiety as you say, why would you hang out in an oral cancer forum with thousands that have had chemo, radiation and/or surgery for mostly advanced staged? I liken it to an alcoholic hanging out in front of the liquor store all day or someone on a diet opening the fridge every hour to see what is in there. Even statements of being the only one surprised with the negative biopsy indicates a different thing to pursue because it isn't oral cancer.

Get on with life. Find a positive, enriching forum to feed your interests. Exercise. Eat well. You should have a new lease on life but you still fear cancer as bad as a survivor. Stay away from the negative!

Ed

Make sure they palpate your tongue thoroughly that way if there is something not visible they may feel it. hugs and good luck..

No it's ok.

I didn't "hang out" around here exactly, I more came across it when I first started having problems with my tongue and throat. The health anxiety is what the doctors put my symptoms down to, as most of them say I am "too young" to have this firm of cancer, so I'm not sure if I actually have it.

I have never worried about my health prior to deveolping my current problems and was only given the diagnosis of health anxiety as what I am worried about is so extreme, and as I said; the doctors I've seen don't believe I could possibly have oral cancer due to my age a lack of risk factors.