I have all the risk factors for oral cancer, practically all of them. I drink, I just quit smoking recently, I was diagnosed with genital HPV back in 2000 and I think I acquired it orally at that same time, I rarely eat vegetables, and cancer runs in my family. My grandfather actually died from throat cancer.

At the time I got genital HPV my tonsils swelled up, I got a referral to an ENT, I told him my concerns, he looked in my mouth and told me I was fine. He said it's normal for tonsils to look that way, I asked for a biopsy, he said there was nothing to biopsy.

I looked up oral HPV online and everything I read said it was very hard to get, so I decided to listen to the doctor and just forget about it. Well recently I've been reading new information and it says that oral HPV is not uncommon and is the leading cause of cancer among young people.

I looked in my mouth the other day, checking out my tooth I just had a root canal done on, and I noticed a red bump on my uvula... you know that hangy-ball thing in the back of your throat. I'm FREAKING out. My throat is also sore and has been on and off all winter... I thought maybe it was just the dry weather, but now I am really worried. My chest also keeps hurting on and off. I'm afraid the HPV turned into oropharynx cancer and then that spread to my lungs.

I have an appt. with my primary care doctor Monday to get a referral to an ENT, but I can't stop freaking out until then!

I'm also very angry that the ENT didn't do a biopsy when I asked 8 yrs. ago, there doesn't have to be a wart present in order to find HPV right? I mean they do PAP smears on your cervix and find it when there's no warts. He just didn't want to do it and now I could be dying. My throat hurts as we speak and I am so upset. I touched the spot in my mouth with a q-tip, nothing happened... no bleeding. And now my chest is starting to hurt again!

Also, I was just at the endodontist, why didn't he notice the red spot? Aren't they supposed to look for that stuff or is it just regular dentists that do that? Or do they only look for it when you ask them to?

Please help!

bw,

The first thing you need to do is calm way down. None of us here are going to be able to diagnose you so to ease your anxiety get to a qualified ENT and let the process run it's course. As long as I've been associated with this cancer I don't ever remember a case where the cancer has gone from the mouth (primary) to a distant met (lungs) without first lodging in the lymph nodes in the neck on one or perhaps both sides. Anyway it doesn't matter what I think or say because I'm not qualified to assess your situation. Just get to that ENT ASAP and lets see what happens.

Good luck and remember we have a saying around here that it's not cancer until it's confirmed as cancer which is usually by a biopsy.

I agree that you need to stay calm and hopefully see the ENT soon. It is likely that you are fine, but express your concerns to all your doctors. I wish I had been more concerned. By the way, did your tonsils stay swollen, or did they go down eventually?

Thanks for the replies... I know you can't diagnose me, I guess I am just looking for people to tell me I am fine, but of course no one really can know at this point. My tonsils are still swollen. I remember on more than one occasion a doctor or dentist sayin wow those are some tonsils you got there... but then when I ask they say it's normal... ok...

Well tomorrow I will call my GP and see if there's been any cancellations so I can go in tomorrow instead of Monday for my referral. I will see what he can do for me there... maybe GPs can do biopsies? I also want an x-ray since my chest has been hurting. If he could do that I guess I wouldn't even need an ENT, but I doubt he could.

I just don't want to die so soon... you know I've pretty much always been a depressed person and I used to always say that if I knew I would go to a better place when I died, I'd kill myself in a second... well now I have a 6 month old son, and I realize I don't want to die anymore...

Thanks for the support.

I know its easy to get thinking bad thoughts when you are worried about something that you aren't sure of. The thing is that more than likely - you just have a cold or the flu.... but honestly I know how you feel. It is hard to trust doctors opinions 100% espcially if you feel like something is off/wrong.

You are right to be vigilant about your health and getting second and third opinions especially with your risk factors... however don't freak yourelf out about it- just push forward with your appointments and wait to hear what the Drs/ENT say. Demand biopsies scans etc whatever you need to answer any doubts you have in your head- but also don't make yourself miserable and worried about it either. I know that is tough


I was misdiagnosed for several months before I was finally referred to an ENT so I think your being adament about being thorough is a good thing - just don't spiral. Get lots of rest this weekend and just relax-- stress can make you sicker than anything else.


K

Look--regarding your tonsils, since they are BOTH swollen it is less likely to be cancer. Tonsil canser usually presents with ONE swollen tonsil.

If you had had tonsillar cancer 8 years ago and it was untreated until now, you would likely be dead. If he can't see anything to biopsy... what would you have liked him to do? Just cut random pieces off your tonsils, hoping that he hit the jackpot? That would be illogical, painful, and probably malpractice. No one can see an HPV infection in your mouth and there is no way to test for it right now, so no one missed doing anything in your mouth as it related to testing for HPV. A very expensive PCR test would have to be done (genetic testing) and even with that it wouldn't mean that you were going to get an oral cancer. Not all people that get HPV get cancer. You've gone from swollen tonsils to lung cancer in two posts, and talked about death. Think about that. You need to reign in your emotional side until you get some answers, and don't jump to the worst possible situation so early in the game.

I have an idea your chest is hurting from so many things going on in your brain. Worry will bring on chest pain they can mimic a heart problem. Yes I have been there, and experienced the same type of pain. Do your best to relax a little and wait for a professional opinion.Yep, it's hard to do, but very possible. good luck and I will pray for you.

I have a sister that worried herself and read herself into having multiple heart problems. She was searching for it because it runs in our family. Cancer runs through our family deeply. I have lost a brother and my dad to it. I knew it was a matter of time before another member of our family came down with it, we all watched for different signs. It ws no surprise for me to find mine. I thought at first it was thrush but it wouldn't go away. No sore throat was involved, no pain as a matter of fact. I did a search on the internet for oral disease and found the thing in my mouth. Denail made me wait three years before fessing up that I had it. Thank God it ws slow in growing. After the biopsy and 33 treatment (radiation) my reports are coming back good. Try to stop worring because until the Dr says one way or the other just try to figure its not there. Good luck, Brenda

Thanks for the responses. I finally had my biopsy Tuesday, but I don't have the results yet, he said they might be in tomorrow or early next week.

I'm freakin' out a little bit over here. He said it didn't look like cancer or a papilloma... but I think he just doesn't think so cuz it's not that common to get cancer at my age and it's supposedly very rare to get HPV in your throat.. but he doesn't know strange and rare things tend to happen to me.

I should be taking a nap right now while the baby sleeps instead of worrying... I conveniently developed a cold a day before my biopsy and so they are just worsening each other... it's really not that bad though, I've had sore throats worse than this.

My uvula looks so weird right now... looks like a slash where they pulled the thing out and white tissue around it. I hope the doctor is right and it's just a benign growth, but I really doubt it, I will be shocked if that's all it is. And isn't that just as rare at 26? I've never heard of anyone I know developing this... I don't think I'll be able to deal if it's cancer. You guys are so strong, I am so weak... I almost chickened out of the biopsy! I was in there shaking, almost had a panic attack... how would I handle REAL surgery and chemo and all that?!

It's absolutely normal to be worked up, though it doesn't do much good. I felt precisely the way you describe, I don't deal well with the unknown. Once I had results and could map out a course of action I was decidely calmer. Hang in there, you are stronger than you think. This is a good place to unload and ask questions though. Come often as you need to and talk yourself calmer. Let us know how it goes.

Thank you... how old are you if you don't mind me asking? I am finding more and more young people being diagnosed with oral cancer. I am back to the suspicions of my original posts... I think it started as HPV in the throat, developed into cancer and possibly is spreading to my lungs. Someone said they hadn't heard of lung cancer without first having lymphatic cancer but isn't it possible I have that and it just wasn't diagnosed...

Back in 2000 I was telling the doctors I felt something in my lymph nodes, a tingling that didn't go away for a long time and a tightness which I still have... I'm not saying I had cancer then, obviously left untreated I'd be dead by now as mentioned before, but I think what I felt was the HPV and now after all these years it's developed into cancer... a major sign of this change being the lesion on my uvula I just had removed... I'm thinking there could be lesions like these all down my throat...

I had a chest x-ray done and the doctor said the results were normal... ok so there's no tumors in my lungs, but something is going on in my chest, I don't think it's stress. Maybe it is my lymphatic system, sometimes the pain travels down my arms to my elbows. Or, on a lighter note, maybe what I have is only HPV running through my lymphatic system, not cancer, and the lesion on my uvula was a wart, and there are skin cell changes happening in my chest and that's why it hurts...

I know I must sound crazy... but really when you think about it doesn't it make sense that this IS HPV and could possibly be cancer. My ENT doc is so sure that it's not, I don't understand why he doesn't see the connection... my tonsils swelled up right at the time acquired genital HPV, I had oral sex with this person..?! He doesn't seem to think anything of it.

... I apologize for the stupid question Sue, if you are 57, the number posted right there next to your name in front of my face.

There aren't any stupid questions...and the 57 is for the year I was born which makes me 51. What you will find, or least what I found, is that the mind is a very powerful influence over lots of things that go on in our bodies. After my diagnosis and until I got to the MDACC and got their exam and a treatment plan, I had more physical symptoms of every type of cancer than you could imagine. I, too, was convinced it had spread to my lungs, my esophagus, and throughout my mouth. Anxiety and an active mind made that happen. I was able to rationalize all my symptoms too. Funny thing was in my conscious mind I was doing everything I could to control the anxiety...but the deep recesses kept it going. Trust in the biopsy results, they are more difficult to dispute and then whatever the outcome, get to a physician with lots of experience with the issue. Feel free to e-mail if you need to vent. I'm keeping my fingers crossed that like me, your additional symptoms will turn out to be a product of an active mind. As to the original issue, I hope it turns out to be minor.

Thank you. I'm going to call the doctor's office as soon as I can tomorrow. He seems so sure it's a benign growth... he said he's right 90 percent of the time, I don't know if he's just being cocky or what... but I guess we'll see. I hope the results are in tomorrow and that they're good ones.

And what's wrong with me that doesn't even say Sue, it says Suess! Like as in Dr. Suess? Sorry, I need to get some sleep or something.

Incidently, I don't think your a bit crazy or maybe we both are, LOL. When are the biopsy results due? Hopefully, you'll help up that average, 90% isn't all THAT good.

Dr. Seuss has the E first...it's what my niece who couldn't say Susan very well called me and I liked it. So, Suess I am. Keep thinking good thoughts...I hope he has your results tomorrow so you can get some peace...well, at least when the baby is sleeping. Congrats on that!

Hang in there buddy. My cancer presented itself through swollen lymph nodes on the side of my neck. This, of course, is after my tonsil metastisized. Your doctors will figure it out for you. A mitake I made was not insisting on seeing an ENT sooner. My primary care physician referred me to a general surgeon who removed a 4 cm node from my neck the turned out to be cancerous. I plan to beat this cancer and am eager to get going.

It would surprise me if you have oral cancer without having swollen lymph nodes in the neck. I will pray for you to have peace in your heart.

There would be no way to "feel" HPV or a lesion that it created. Non ocogenic versions of it that create papillomas (warts) which obviously can be seen and felt. The risk of HPV lies in the fact that it can not be felt by the patient, seen by the doctor or felt through palpation. Also the vast majority of diagnosed oral cancers are found when they are isolated to the mouth and not after they have metastasized to the cervical nodes.

Thanks everybody... Frank, what were the symptoms of your metastisized tonsil? Was it just lumpy or were there growths on it?

My lymph nodes feel swollen to me, not a lot just a little... but all the doctors say they feel normal... also the lymph glands in my mouth feel bigger, at first I thought they were warts or something cuz I can feel bumps with my tongue but I went to the ENT back in 2000 and he said they were just glands and they were fine.

Like you say, Brian, you can feel a wart... so isn't it possible to feel it forming... I think I read somewhere that you might feel tingling with warts... I'm feeling it in my ears now too which is really freaking me out.

Well thanks again, I will be praying for you too Frank, I will pray for all of us. My biopsy results weren't in today, I have to wait 'til Monday.

The virus versions that cause visible, palpable warts do not cause cancer. Tonsils do not metastasize, the cancer cells in them do. Tonsil tissue is not smooth by nature, the tosillar crypt, is actually convoluted with folds and crevices in it. You should be able to feel your lymph nodes when they are normal, and they are not a uniform size in all people. Nodes that have become involved in the cancer process are firm/hard, fixated in place, (you can't push them around), and painless.

Has anyone here had cancer on their uvula? What does it look like? I was looking in my mouth again and I think the doctor might have missed a spot... below the area he biopsied it looks like there's another bump. Maybe it's apart of the area and just looks different...? I don't know.

Yeah my gynocologist told me that the HPV viruses that cause warts don't cause cancer, but it's possible to be infected with more than one strand.

My lymph nodes are hard, firm and fixated. I have noticed 2 moles on my breasts that I haven't seen before and they are red and irregular in shape... isn't that a symptom of cancer? Or is that skin cancer only? Is it uncommon to have both oral cancer and skin cancer? Sorry if I'm annoying you guys.

Also, I've been having bad breath lately, and gum isn't helping like it used to. I read that bad breath is a symptom of mouth cancer. And my uvula is not healed... the doctor said my throat would be sore for a couple days. A couple is two, it's been like 4 days. I remember reading that another symptom of cancer is a sore in the mouth that doesn't heal... I should call and ask about that but they aren't open on weekends.

Holy Cow!! Slow down. Take a breath. You are going from strains of HPV you don't know you have, an area on your uvula right next to where a trained professional was looking and biopsying tissue, to moles on your breasts, to bad breath, 4 days of sore throat (a cold normally lasts at least 7 days).... The doctors have felt the nodes you are concerned with and say they feel normal. You are overreaching here and clearly reading too much into everything that seems slightly out of the ordinary. Hold it together until your reports come back and you are sure you actually have something. You are going to put yourself in the mental ward. I don't mean to be unsympathetic, as we all get scared of stuff that seems to be going wrong, but you need to hold it together until someone definitely tells you there is a problem.

Thank you for your advice... I think I just try to prepare myself for the worst.

But yeah, it looked like two bumps on my uvula but when I went to the doc I only referred to it as one... why, I don't know, but I figure if he saw one he saw the other. One of them is gone but the other is still there... oh well I guess if this biopsy shows something dangerous I'll just have to get the other one removed also... or have my entire uvula removed.

A cold normally lasts 7 days, sure, but that doesn't really have anything to do with this biopsied area healing does it?

What exactly is the difference between HPV and cancer besides the fact that HPV is caused by a virus and cancer isn't? They both cause out of control growth of cells...but what exactly is the difference between a wart and a tumor?

I'm really worried about my ears, a symptom of throat cancer is an earache... but maybe HPV would cause the same symptom... but maybe it's just as dangerous... I'm scared I'll go deaf.

Also... I have the same symptoms as some other people that posted on this site... these people for some reason never posted what was wrong with them, they just disappeared. Well I will definitely let you guys know what my diagnosis is, I can't understand why the others didn't.

HPV isn't cancer. HPV is a virus.

I made the comment about the 7 days for the cold virus because you are worried about something that you have only had for four days! Not even as long as a cold and your thoughts are going to something deadly... This isn't a reasonable train of thought.

You really need to read more about these things before you post. This forum, and the posters here, are certainly willing to try to help, but you are making statements that are completely unreasonable, they are fears not based in how biology or the symptoms of all this work. Given these fears, perhaps you should find someone to see that can help you work through your fear issues. That might help you a great deal to keep a balanced perspective.

Others that have finally determined that they don't have oral cancers, have moved on. The board after all, is a forum for people with the disease and their caregivers.

Ok, so my results came back benign... for cancer and HPV. And so the search continues... for the cause of my lumpy throat. Thanks everyone for your support.

Good luck and we hope we never hear from you again on this site if you get my point.

Please get some help for your hypochondria while you are at it...
I am closing this thread.