Hello everyone,

A little background on myself, and I apologize because this is going to be LONG...

I am a 28 year old male that has never touched a cigarette or smoked anything else in my life, I drink only VERY occasionally and very little at that. Quite overweight but in generally good health other than that.

Unfortunately, I also fall squarely into the HPV statistics of "6 oral partners" AND I have never been good with my oral health which appears to erase all the good that I've tried to do with my health aside from that.

I've been dealing with hoarseness that comes and goes, discomfort on the right side of my throat when swallowing, general pain on that side and the occasional taste of blood in the back of my throat since mid 2007 at least. I've been through at least 3 or 4 ENTs in that timeframe, one of which resulted in a tonsillectomy only because she was more concerned about sleep apnea (my tonsils had both been enlarged since a mono like illness in my early 20s) than cancer. Those tonsils were supposedly sent to pathology though I never received any official confirmation of that.

Unfortunately the tonsil removal did nothing to resolve the symptoms. Which continued off and on over the past couple of years. In late 2008 or early 2009 I noticed a small nodule at the base of my right tonsillar pillar, which I presume was covered by the tonsil before. I wrote it off as residual tonsil tissue since I had already done so much worrying about cancer and had no positive diagnosis from any of my ENTs, after scoping, mirrors and the whole nine yards. For a long time this nodule remained about the size of two pen tips, however I was very alarmed recently when I looked in there after a recent severe cold and noticed it had approximately doubled in size, maybe to a half cm or less. It is a smooth pinkish nodule.

Because of the continued symptoms, and a NEW symptom of a dull muscle pain in the back left side of neck since mid-2010, my most recent ENT in Missouri finally agreed to a CT scan of the head and neck. During our review of my CT results, I explained to him about the nodule (it wasn't quite as big at that time). He looked at it and said it didn't concern him and that biopsy would be difficult because I'd have to hold my tongue in just the right position to get at it. I did not like that response at all but I was in the process of moving home to Texas and didn't have much of a choice but to leave it be. The CT results we reviewed came back normal from the radiologist, and he said they appeared normal to him aside from two slightly enlarged jugular nodes on either side of my neck. I also had an abdominal CT, colonoscopy and esophagoscopy in August of this year that was ordered by a different doctor for different reasons.

Fast forward to tonight and another symptom that I am realizing could be just as alarming as the nodule in my throat. For the past 2 weeks I have had a watery right eye that does not easily clear tears, and has slight blurriness. I also occasionally sense light pressure on that side. Of course all of the internet research I do on these symptoms leads straight to SINUS cancer.

I am paralyzed currently with anxiety and fear, and have set a new ENT appointment with yet another new ENT here in Texas for January the 3rd.

Now, not only do I have to worry about the possibility of the original throat or tongue cancer (which I am fairly convinced I have at this point, I don't see how the symptoms and visual changes could be ANYTHING benign because I am NOT imagining these very disruptive symptoms), but sinus cancer on top of that.

Everything I read about sinus cancers says on the one hand that they are extremely rare, but on the other hand I keep seeing indications that sinus cancer BEGINS in the oropharynx. If it begins in the oropharynx then wouldn't spread of throat cancer to the sinuses be extremely common? I am having an extremely hard time parsing all of this information and am riddled with anxiety.

Thanks for any help anyone can provide, and I appreciate anyone who actually made it all the way through!

Hello Playdrive

There are various causes for a watery eye. A sinus cancer is way down the list. The commonest cause is some sort of irritation (shampoo, cosmetic, etc?) or eye infection. Have you seen your doctor about this? You have made an ENT appointment for Jan 3rd. Let him know your fears. The specialist should be able to check you out and reassure you.

Let us know how you get on.

Best wishes
Vinod

Thanks for the response Dr. Vinod,

I guess a few follow up questions would be whether a sinus tumor large enough to be causing symptoms would be something that would typically show up in the CT scan I had last month. I am concerned primarily because the eye watering is only in the right eye and I do also feel a slight pressure.

I have tried to be as active as possible in my care and I guess my ultimate fear is that somehow I have been misdiagnosed for the past 3 or 4 years and what started out as a throat or oropharynx cancer, has somehow spread up into my sinuses. Obviously my biggest worry was still the throat itself, and now I worry I have even more involvement. I've had multiple ENTs examine me over all this time, the recent CT of the head etc. I have tried to be as active as I can in my own care, and just feel like maybe I didn't do enough.

Thanks again.

Well I just can't get a break with all this. Since I last posted my eye watering subsided a bit, but I was left with blurring vision in that eye, particularly at night. Tonight on my way out of town I noticed the right side of my tongue felt a bit sore for the first time in my recent memory. I poked at the sore spot (I can't really see anything there yet, but I can feel it) with a straw and it began to bleed a tiny bit. Now I have to keep my eye on this before my ENT appointment as well. Perhaps I have a genetic susceptibility to the HPV virus that is causing multiple lesions in my head and neck, I have no idea, but this does not look good.

Hi Playdrive4me

I'm sorry that your doctors are giving you the runaround. That ENT in Missouri should be ashamed. I seriously doubt that he'd have such a cavalier attitude if he were the patient.

I know you're just trying to be proactive, but for your own peace of mind, you might want to cut back on your internet symptom search. I'm not saying quit the internet, just be aware that it's not the best way diagnose your situation, especially when you're scared and already expecting the worst. For all the good it CAN do, the internet seems to specialize in worst case scenarios as far as diseases are concerned.

I truly hope that your appointment tomorrow goes well, I would just urge you to take with you a list of symptoms, any meds you might be taking to alleviate whatever pain you're in, and a list of questions. Also, and more importantly, have someone go with you to the appointment who can write down things you're bound not to remember and to ask any questions you may have forgotten.

Please let us know how it turns out, and know that you're not alone in this.

Julia

Thank you for the kind response, Julia.

One of the worst things about all this has to be the anxiety that keeps me from even sleeping on occasion (like last night), before I have even found out if anything is wrong. I have such an utter respect for those that have gone through this.

In any case, after 3 years of going through all of it, I have to balance life and symptoms, and I actually came to visit my brother this weekend and was planning to post-pone my new ENT appointment until the following Monday. Wouldn't you know it just like clockwork that's when I began feeling that sore spot on my tongue. Of course nothing I can do now, I am already out of town, so I'll have to go next week.

Hello Playdrive4me
I'm sorry to hear your story, it sounds very scarey. I too did all my research on the internet, feared the worst, and I was right! However, I'm not telling you this to frighten you, but to tell you that I often get random watery eyes, usually on the left side.(co-incidentally the same side as my cancer) I don't know the cause but it's nothing to do with my cancer (tonsil), I just suffer from watery eyes. My brother has the same and my mum used to aswell. I think my mum had her tear ducts unblocked once, but it was quite unpleasant and she didn't have it done again. My wateryness (is that a word?) can be a real nuiscence, but it isn't life threatening, lets hope yours is the same. Its worse if I'm tired or its very sunny or cold. I have blue eyes and am quite light sensitive. I hope this goes some way to re-assure you.
Good luck and let us know how you get on.
Vicky

Hi, I had a large tumour in my sinus and no watery eye at all so it may not mean anything at this point.
I agree with Julia that you may want to chill with the internet research. As with everything on the internet, there is a lot of bull out there. I would stick to the knowledge of people who have "been there, done that". That way you are talking to people that really are in the know.
I hope it all works out for you. Hagg.

Thanks Vicky and Hagg,

One of the bitter ironies I find about all of this, is that even in the absence of a diagnosis, I think I essentially spend more of day in extreme anxiety and worry, than even those who have been or are going through it. However, my body is not helping matters.

The eye watering has slightly subsided (if my eyes DO water enough, my right eye will "pool" more than my left does though), but as soon as I got a little break from that, I began to experience a persistent dull pain in the right anterior part of my tongue. It is better when I eat but talking a long time makes it hurt more, and this has been going on for close to two weeks. My understanding is that HPV does not favor this portion of the tongue versus the tongue base (the area where the majority of my longest running symptoms have always been). Given that, I have not the foggiest clue what is going on, but every time it hurts, the anxiety comes back even stronger because it acts as a constant reminder that somethng is wrong. It is a vicious cycle. My mind begins to race thinking about what I've read regarding base of tongue tumors "hiding" from the doctor until they are very large, and that maybe that tumor has extended into the front part of my tongue etc etc. Just like when I had the eye symptoms. All of this and that still doesn't even touch upon the nodule on my right tonsillar pillar.

I had to postpone my ENT appointment one more week to next monday due to weather, so I guess we'll see what happens there.

Thanks again, and I hope you are doing well Vicky.

I cant understand how if you are so worried you would postpone appointments?

Hi Helping Dad. As long as this has been going on, I have to try to keep a normal semblance of a life. I didn't intend to post-pone it twice but it just worked out that way because I had to go out of town to give my brother a vehicle. Then the midwest weather prevented me from getting home. We'll see what news I get this Monday.

sounds good - let us knows how it goes.

Boys and girls... I am a complete and total failure, wuss, pansy... whatever you'd like to call me. Because I have a feeling deep down that this is going to be "the" visit, and my anxiety level is extremely high right now, I once again postponed my appointment... and this time there was no excuse other than the fact that I just got back home last night and I wanted to relax a bit and calm my nerves before I went and heard the ENT say "yea that thing needs to be biopsied".

However, at this point I don't even think it matters anymore. I hadn't paid much attention to a symptom I developed approximately 3 or 4 weeks ago... intermittent dull pain in the top part of my right shoulder that refuses to entirely disappear. So of course today I finally decided to find out if I could link this pain to Oral Cancer (as I eventually always do with any new symptom that lasts more than 2 weeks). Surprisingly I couldn't... but what I did find is that phantom shoulder pain when you haven't done anything to injure your shoulder is a hallmark of lung cancer. No I don't think I have a lung cancer primary, but as long as I've been fighting with these oral symptoms it is entirely probable that whatever is in my throat has SPREAD to my lungs. I've had an abdominal CT scan and esophogoscopy in August of last year, and a head and neck CT Scan in mid-October... but what no one has ever done is a chest X-Ray or chest CT. The head and neck CT supposedly captured the upper lobes of the lung, but I don't know if it has any value being almost 90 days old.

Strangely, this gave me some relief from all my anxiety. Unlike many here (though certainly not all) I do not have a significant other who could be my caretaker. My mother currently lives with me but she also has to work, and my brother just got his career back on track in Kansas. My Grandparents live in the Northeast and my aunt and uncle live 300 miles north in Dallas. One of my biggest fears of this disease has been the immense toll the surgeries and ensuing treatments would take on me and my family. If this has in fact progressed to my lungs, then it is unlikely there will be much that can be done other than final palliative treatment. The Oral Cancer Foundation website seems to indicate that 10 to as many as 34 percent of OCs present with distant metastasis, so it is certainly not impossible. A friend of mine who got tired of hearing my complaints one day told me something that has always stuck with me... "It is not as if you are a victim of a random cancer out of no where, you participated in promiscuous behaviors that you say put you at high risk for this, IF any of what you say ends up even being true". Harsh as that is, he is right, and my family should not have to suffer an extended illness because of stupid mistakes I made when I was younger.

I will still update you all on what happens Thursday. One way or another, there has to be a resolution to this.

This message has been edited. Last edited by: Playdrive4me,

You're right!
Three years of symptoms and no diagnosis (from numerous drs by the sound of things) should surely have you close to death's door. I think you're playiong a game ~ with us, with yourself ....
Anyone as concerned (and convinced) as you say you are about a cancer diagnosis would SURELY be sitting outside the drs surgery waiting to get things moving. Maybe you don't want to hear that you have nothing wrong?
Right from your first post you mentioned you have put yourself at risk with your sexual choices and this last post makes me think the very worse thing ( which can be crippling)you're 'suffering' from, is guilt. Seems to me you've got that in spades!
I really hope I'm right and that you learn (when you keep an appt)you actually have not even one major health issue. Youl'll have a real job on your hands then trying to find something to concentrate on.
The very best of health to you.
Deborah

Hi Deborah,

I am definitely going Thursday and while I certainly would love more than anyone to find out that it is "all in my head", the symptoms would dictate otherwise. After all this time, it's a combination of the fear of getting a "how did they miss this" response along with the frustration of explaining all of this again and hoping not to hear the tired response of "you're too young and you don't smoke".

I simply look at it like this... If I were a doctor and I had to evaluate a patient based on symptoms alone... daily hoarseness, the taste of blood and a VISIBLE growth on the tonsillar pillar (a HIGHLY suspicious location) would be enough for me to make a cautious diagnosis of oral malignancy. For a while I thought that maybe the nodule was residual tonsil tissue, but it is growing, and now my understanding is that tonsil tissue grows from the POSTERIOR (back part you can't see) of the tonsillar pillar, NOT the front.

I do not necessarily feel guilty about what I did in the past (I've been told that before). I was young and stupid and otherwise was always very careful with my choices (I am one of the few people in my age group that I know who has never even thought about touching a recreational drug of ANY kind for even a split second, and has never smoked one single cigarette.

If it turns out that I'm wrong about all this then I will feel quite stupid, but I am a very logical person, and from a logical standpoint I have the risk factors (multiple possible HPV 16 exposures, one of them with a girl who later told me she had cervical dysplasia, along with poor oral hygiene on my part), and I have the symptoms, and the symptoms aren't going away... It seems pretty bleak to me.

Logic means I also have to look at the positives of course, and the one thing up to this point I haven't (yet) had is an obviously enlarged lymph node in my neck. However, the CT did show 2 mildly enlarged ones on either side jugular (ENT was not concerned with them apparently), and I'm also overweight which would make them hard to palpate, so there could be small ones. I know many people don't ever get obvious lymph node enlargement though.

We'll see how it goes.

This message has been edited. Last edited by: Playdrive4me,