... I am pretty concerned about what is going on with my mouth and while some might call me a Hypochondriac (and believe me I hope thats all I am right now) I think my fears are justified and the advice and support Ive received thus far from this terrific community has been helpful. However for a site that preaches the importance of early detection and the frequency with which this disease is missed and MIS-diagnosed, it sure doesnt take a very tolerant stance to those who are jumping through hoops trying to discover the root of a problem that very well could be dangerous, especially without an explanation.

I also noticed the other fellow who seems to be in a similar position had his thread closed as well. Another board I posted on for a short while and still participate in occasionally (first because of previous fears related to my Lupus and later as a helper for others seeking advice)used to have a slew of persons coming in everyday with wild and sometimes completely irrational fears over exposures they thought were possibly dangerous and while sometimes we felt like kicking them right in the behind, it was understood that if people who had a genuine fear and concern of a given condition were simply turned away, however outrageous their fears might have been, it would in the end be detrimental to even the one or two people who might have had a genuine cause for concern.

I've recommended this site on a couple of occasions very emphatically. Sadly, I would have to reconsider doing so again at this point.

Ian.

The other guy was a wack job - you really want to put yourself in his league? This is a public forum and it can be difficult to separate the wheat from the chaff at times. The fact remains that periodically some devious people come here to suck the resources away from the "real' cancer patients/caregivers and judgement calls must be made (I am speaking for myself, not Brian).

We are a very compassionate group and go to great lengths and personal sacrifice to help others. Do you really think it's easy to continually dredge up old fears and feelings by the members of this board? Do you really think I like having the spectre of my immortality handed to me practically every time I scan the boards? And then there are these little weasels out there that feign illness for some kind of sympathy or pychosis.

This is one of the best cancer forums on the internet and you're not recommending us is a diservice to those other people in need.

Sure, I agree with you 100 percent, the afore-mentioned person does seem like a whack-job. In fact, I tried to throw a little sense to him myself before his thread got closed, but I've just learned it isnt my place to make those judgements based on things I have witnessed in the past.

I do respect the contributions of the members of this site and it certainly is not my intent to stir up any old feelings or hurt or otherwise cause grief to anyone in anyway. I dont really have an answer to that so much as to say that the same goes for any board related to a serious health condition that at the same time attempts to make an effort to raise awareness and assist new members in the determination of whether they might be afflicted by the given condition. This was a real problem at the other board I mentioned, and I myself felt bad for those suffering the disease that had the heart to respond to the crazies who would not accept reality over there.

Another thing, being 22 years old really puts an entirely different spin on things for something of this nature. With everything thats happened to me over the past year and a half, Id consider myself pretty happy to make it to even 55 years old. Ive been alive just long enough to know the good in life, but not to enjoy it, and thats a really hard thing to have to deal with on your own.

Obviously, if I come across someone truly in need, particularly someone with a recent diagnosis or otherwise dealing with the disease, Im not going to give it a seconds worth of thought before I send them right over here. But someone who mirrored my situation would take a little more thought.

I still come here all the time and read the posts,and would reccomend this site to amyone as it is probably the best one I know of even if some of the responses didn't seem to be warm and fuzzy.
I just figure that when I find out what is happening to me, if it should turn out to be the big C, then this is the first place I would turn to for advice. I think what can cause problems is the vaugness and variety of symptoms that oral cancer can have. Also there are alot of stories about people who go undiagnosed for months even while seeing doctors,even ENT's. I think this board is mainly about support for people who actually have this disease and not really meant for people who are scared they might have it and are seeking more accurate descriptions of symptoms and opinions on likelyhood of diagnosis or misdiagnosis.
Regardless, there are some very awesome people here and not to reccomend this site would be a BIG disservice to someone that needs help.
This is a great site and these folks have been through ALOT.
That wack job thing...Gary might be talking about me too lol.

I agree with you that being 22 puts a different spin on things. I was 29 when I was diagnosed with cancer. (I just turned 30) We are WAY to young to think about death.
I understand your worry. Get a second opinion. You are correct, sometimes doctors miss things.
This group has been so supportive to me. This is the only place I can go where people understand what I have been through. So many people here have been through so much. I would give almost anything to erase the past few months, to have never had to deal with any of this. I think that everyone on this board feels the same way. Get the second opinion, and then put all of this behind you.

For what it's worth, this board is the best I've ever found on the net.

It is virtually open to anyone. You can dialogue basically unrestrained and uncensored (unless you break the rules), and there are people here that are selfless, and careing about fellow human bengs that they have never even met.

Nothing compares.

I am looking forward to the time when I can be more of a "giver" than a "taker" from this forum.

Ian. My prayers are with you. May you have peace of mind and comfort and a long productive, wonderful life.

May God enlighten you,
Barb~

Thanks to all of you for your support. Once again I did not mean for my problem and worry to cause grief or otherwise bother anyone here, and I sincerely apologize if I have done so.

I admittedly am a person who is not content to let sleeping dogs lie. I HAVE to research anything I like, want or am going through fervently, and in the case of diseases, that ends up doing more than harm for me then good.

An example, I am concerned because this thing is apparently on my Tonsillar Pillar right? Ive been somewhat comforted by the fact that as long as this has been going on now I havent developed any palpable swollen lymph nodes, and I get so frustrated because it seems like the information I find is purposely put there to destroy any hope I have. I read that if it begins in the Tonsillar pillar, its UNlikely to manifest in the lymph nodes. These are the kind of things that make me concerned, and I just feel the need to discuss them to prevent myself from going nuts.

Thanks again everyone.

Ian,
It is normal for lymph nodes to become swollen when there is an infection nearby - that's their job. You could very well have peritonsillar abcess (PTA) which responds very poorly to antibiotics and takes a long time to get better. There are many conditions it could be other than cancer. If your pathology came back negative and/or no biopsy was performed because there is no ROI (region of interest) then you should be home free.

I went back and read your original post - I never had bad breath due to the cancer but an infection will sure cause it.

Gary you are a good guy, thanks for taking the time to respond, you really really could never say a word to me again and Id still appreciate the help youve given me already.

You are also very observant, I had completely forgotten I even mentioned the breath problems. However, I HAVENT had any pathology reports at all. All I got was a thorough visual inspection by the ENT that probably wasnt much more thorough then the one a trained dentist would give you. As far as the Lymph nodes, I think we got our wires crossed there. My point was that I HAVENT had any swelling that I can feel yet (and Im constanly feeling there) and I thought that was a GOOD thing... What I read later basically said that Tonsillar Pillar primaries would be the least likely to cause lymph node involvement anyway, so my solice found in not having any is basically nil.

Moreover, he didnt even think the tonsils were THAT big but uhh... they are about the size of a marble at least. I know that most of the time when I talk I have that "hot potato" feeling to my voice (yes I read that on a medical site too ), Not sure how else to describe it but it doesnt feel normal when I talk.

By far the most disturbing problem Im having is my right ear ringing and feeling "closed up" or clogged but theres nothing there (he looked in my ears as well)! Sometimes it hurts a little too. I know a few of you guys mentioned having some of this after your diagnosis as well and it is driving me up a wall.

Its just hard because everything associated with these symptoms points to the worst and now I will have to wait for yet another appointment to have this biopsy done.

Ian, the 18 to 25 yr olds on active duty in Iraq and Afganistan are looking at life a little differently now too.[I know because our son was there last year] Please get centered and find your inner strenght. Whatever this turns out to be, you can deal with it. And there will be people to help you. Amy

I suppose your right Amy.

I was just watching a special on Aircraft Disasters on MSNBC and it kind of makes you put things in perspective. People die everyday, and lots of young people too.

I suppose I should be thankful I didnt end up having the serious conditions I previously feared instead of cursing the world for possibly having this.

Ian, I wish that our locations were such that we could sit on a porch swing and watch the night sky and I could share with you the joy of appreciating each day we have on this earth. I would then give you a big hug and maybe some hot chocolate and send you off to get a good night's sleep. Rest easy. Amy

Ian,

I have been watching your posts on multiple "health boards". You need to let this go. I know it is very frightening when you are "convinved" you are ill and you have every symptom. You have been to several doctors who are telling you that nothing is wrong or that you do not have oral cancer. Let go & live your life. Maybe you should talk to someone concerning obsessive compulsive disorder. It is real and you need to see a doctor for it but not an oncologist or ENT.You are going to make yourself crazy with this!!!An exam by an ENT is what you needed and its what you got.My friend who really did have cancer of the tonsil was diagnosed by an ENT, they know what they are looking for.I work for a dentist and I have heard him say millions of times"some people just have big tonsils", this could be you.Please try to relax about this.Like Gary said it could be many other things, it doesn't have to be cancer.Take care! Maureen

Hi Maureen, I remember talking with you at the other board. I am trying to let it go, but when the symptoms come it just brings it all back again. The worst right now is the obvious red patch, which despite every attempt I cant stop the urge to keep looking at, and the ringing in my right ear that has become almost unbearable, it literally sounds like the sound those really cheap televisions make and it is almost constant now and only in my right ear.

Ive set it one more appointment with my ENT, hopefully ill get the area Biopsied and if that comes back negative, then theres quite simply nothing else left for me to do, Ill just have to live with it. Unfortunately the "soonest" they said they could get me in is the 29th of AUGUST!! So I guess I just get to go through my personal hell until then

The sad thing is this is destroying my life. Yes I should be thankful nothing has been found, of course. But at the same time I feel like im standing in front of a big brick wall. All I can do is stand there, wondering whats going on inside me, if anything at all. I cant move forward and accept a diagnosis, learn to come to terms with the inevitable, OR celebrate victory over it. I just stay stuck in the same place and it continues to eat at me. Either Im going to end up going insane or Im going to do something not entirely reasonable... but something has to give.

Ian,

If the biopsy comes back negative...you have to move on and if you can't, you need to get a professional to help you! You will drive yourself crazy! I am speaking from experience. I used to be this way(not the extent you are!) but bad enough that I knew I had to stop with the medical books & the computer always looking up symptoms!I was convinced I had every illness I read about. It was an anxiety thing I have since gotten help with. I had to re-program myself.You will celebrate and then move on or you WILL go insane.Ask the doctors office to call you if they have someone that cancels, so they can see you sooner.If everything is okay, FORGET about it.It IS destroying your life, thats whats sad. Try to go a hour without thinking about it and then try 2. Its hard at first but can be done.Good luck & I hope you find something out soon!God bless!MAureen

Thanks Maureen,

I appreciate your kind words. I will try to get that appointment moved up and put this behind me or do what I need to do either way. Ive had about enough at this point. Im like "Body, do what you want at this point but just make up your damn mind!"

Thanks for the support, Ill go ahead and leave you guys alone for now, this thread can be closed if necessary.

Ian.

Wow, what happened here. Seems like I brought the mood of this whole place down or something, there hasnt been a post in a week!

Ian look at the post above yours ...you said to close the thread !
Marica

Beam Me Scotty - there's no intelligent life here!