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#25462 - 11/12/02 03:51 PM Convinced
Adam Burrell Offline
Member

Registered: 11/12/02
Posts: 11
Loc: King George, Vancouver, Canada
Hello all. I'm a 26 year-old father of 2 who feels certain that I have oropharangeal cancer. I've presented symptoms for a little over 4 months now. It started with a funny feeling in the back right side of my tongue, like I had something growing there. I looked and back past my taste-buds I could see a small, pencil eraser sized outcropping. I felt it and it was very soft, smooth and roundish. Slightly pearly in color. I reached back and felt around on both sides. While I had a bumpy texture on the other side, the right side was far more prominent and there were serveral other smaller bumps. In addition to that, I had a slight pain in the eustation tube area on the same side, as well as some pain in my jaw and back of neck/head. I also had some minor periodic hoarseness. I went to my family doc and he said that besides the fact that my papillae were prominent, nothing looked abnormal. I had gone through several periods of this before and it had came and went so I felt okay. He did a strep test and that came up positive so we started AB. I didn't quite feel like the strep had anything to do with this but went ahead and took the AB. Recheck 2 weeks later said the penicillin didn't work. Took Keflex for 10 days. Next strep test was neg. I still had the problems with my tongue. Nodes weren't swollen. I know this is the worst thing to do, but I went to the internet. As soon as I put the symptoms in, oropharangeal cancer came up. I went back to my doctor and told him my fears of this specific malignancy and he told me that he didn't see anything that would indicate that. At this point, I was experiencing some facial "tingling" or numbness on that side. He sent me to an ENT. I have a very deviated sceptum and nasal polyps. He put me on a week of steroids for the polyps, said that the bumps on the back of my tongue were just circumvelli papillae and that my throat looked fine. He said that my tonsil was prominent on that side but looked healthy. He ordered a limited CT of the sinuses and said that looked clear, just that my sceptum was deviated. My symptoms persisted. My throat was hurting slightly on that side now and I was feeling the symptoms more frequently. I do need to note that the symptoms would almost go away for several days, sometimes almost for a week only to return later. He sent me back to get another CT, this time of the full neck and head with soft-tissue contrast. I had this done on Sept 5. I got the results on the 28th. He said that all was clear and at the time my symptoms were subsided so I felt good. I just couldn't believe that I had been feeling what I had been feeling and not had any problem. He seemed to be totally unconcerned with my throat at this point and went back to my nose, saying that even though the polyps were shrunk he still wanted to do the sceptoplasty if I wanted it. He said it was simply a matter of comfort. My symptoms returned a week or so later and I went back to my family doc with my CT slides. He looked them over and said that everything was fine. In my mind, however, I was questioning that due to the fact that this CT was over a month old. I returned to my fam doc yesterday for a blood test (CBC with mono spot). Everything looks normal there and I don't have mono. I was thinking maybe that because my 3 year old son just was diagnosed with it. My bilirubin count was slightly elevated but my blood work was otherwise normal. I have now decided to go see a Head and Neck specialist who seems to have written alot on the diagnosis and treatment of oropharangeal carcinoma. I go see him on the 19th of Nov and I'm going to be very anxious about this. I am glad to have found this forum if only for the comfort of knowing others who are going through this as well. I will keep you all posted. Are the CT scans fairly accurate in diagnosing this type of cancer?

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#25463 - 11/12/02 10:27 PM Re: Convinced
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4678
Loc: Laguna Niguel, CA
You certainly have been chasing this thing for a while!! Hopefully this will turn out to be something benign, but you are correct in pursuing this until you are completely satisfied that you have a definitive diagnosis and treatment plan. Our constant caveat that anything which does not resolve in two weeks on it
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#25464 - 11/13/02 07:37 AM Re: Convinced
Adam Burrell Offline
Member

Registered: 11/12/02
Posts: 11
Loc: King George, Vancouver, Canada
Thanks for the response, Brian. I have indeed been chasing this for a while. While I'm sure that my doctors are competent, I just worry that they don't know what they are looking for and think that my age is going to rule out cancer. Cancer does not discriminate. As far as my risk factors, I did smoke regularly, albiet not more than a pack or two a week, from the time I was 15 until I was 21. I have had a couple of slips between then and now but have not been a regular smoker since. I've never been a "dipper" or anything like that. I have not been tested for HPV but have put myself in the position to accquire it. I don't test positive for EBV. One of the biggest risk factors in my eyes is that I have always slept with my mouth open due to my deviated septum. As far as the CT scan goes, the report notes that all areas are clear of abnormal tissues. The only thing noted other than my septum being deviated is that several lymph nodes in the jugular area are enlarged but "not pathologically", for what that's worth. I want more than anything for this to be benign but don't know of anything else this could be. This is the worst thing I've ever gone through, Brian. I wake up every morning and it is the first thing on my mind. I hold my children and hold back tears every single day, knowing that I probably won't be around to see them grow up. My son loves me more than anything in the world...I am his world and it is killing me knowing that he's going to have to grow up without a dad like I did. I don't have any hope at this point and I feel like I'm just wasting time waiting for this appointment. I'm angry that my doctors haven't taken action on this. My ENT is supposed to be a very highly regarded doctor. I'm thinking about going to an oral surgeon before my appointment with the otolaryngologist. I will keep you informed and will keep praying that I don't join this club.

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#25465 - 11/13/02 07:50 AM Re: Convinced
Packer 66 Offline
Platinum Member (200+ posts)

Registered: 04/11/02
Posts: 273
Loc: Maine
I know this is really a scary time for you, and I can feel your fear.......but if it is cancer, there are a whole lot of survivors here, who are beating the odds......your young and healthy, and that sure is a plus....the waiting and not knowing is the worst, but you`re doing all the right things..........Many Prayers your way........Packer

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#25466 - 11/13/02 07:59 AM Re: Convinced
Adam Burrell Offline
Member

Registered: 11/12/02
Posts: 11
Loc: King George, Vancouver, Canada
Thank you very much for your kind words of encouragement, Packer. Thank you too for your prayers, as they are much needed.

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#25467 - 11/13/02 10:54 AM Re: Convinced
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4678
Loc: Laguna Niguel, CA
While you have some things which are obviously not right and hopefully you will receive a more finite diagnosis in the near future, I believe that you are going beyond what is appropriate emotionally right now. You do not have a diagnosis of cancer...talking about the fact that "he (your son) is going to grow up without a father" is putting too much to this, too soon emotionally. There are many things this could be other than cancer, and since you are not qualified to come to a diagnosis yourself, you will have to trust in your doctors to find out what this is. That does not mean that doctors cannot be wrong, it means that if the ones you are seeing can not provide you with a conclusive answer to what is going on, you will have to continue your quest to find someone who can. Also regarding the CT scans, a two month old CT is not that far out of date in the world of oral cancer, and even in those with mid stage OC, the rate of progression of the disease is unlikely to show up differently in two CT scans two months apart. Only when a patient is in very late stages with massive numbers of active cancer lesions, or those of very large size do you see rapid movement in film of progression. Clearly given the radiologists report you are not at this stage. Lastly, sleeping with your mouth open is not a risk factor for oral cancer. It could however lead to other chronic conditions that may affect you if there is something which provides a constant irritant to the tissues of your oropharynx. Try to keep a balanced perspective here. Letting your mind wander to death is way ahead of where you are. Even with a diagnosis of cancer, this disease can be defeated, as many of us here can demonstrate......
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#25468 - 11/13/02 01:12 PM Re: Convinced
Adam Burrell Offline
Member

Registered: 11/12/02
Posts: 11
Loc: King George, Vancouver, Canada
Brian,

Thanks again for your words of encouragement. I have been back and forth on this emotionally. I will go weeks feeling confident and strong enough to handle any outcome. During these times I feel as though I could handle the fight with an optimistic approach. I felt okay after my CT consult when they said the CT was clear. I still had my concerns but figured they knew what they were doing. Then the symptoms came back and I sunk back into this. It's tough because I'm typically a very optimistic person but I haven't been given any reason to be. Noone can give me an alternative as to what this could be and all of my symptoms point to this. I made an appt with an oral surgeon for tomorrow morning. It is just a consult but will at least give me another shot at some sort of direction. It will give me some more information to take to my otolaryngologist next week. The weirdest part about all of this is the inconsistancy. 2 years ago, I started getting this blister in the soft palate (the back top of my mouth) It would swell up and then burst after a few days. It seemed to happen whenever I would eat or drink certain things. I went to my doc who sent me to an oral surgeon for a biopsy. He didn't even do the biopsy because when he took a first look at it, he said that it was a blocked salivary gland and there wasn't anything he could do that it would work out on it's own. I was very relieved but irritated. I got them in several other areas of my mouth during the course of the next 2 years but they would just come and go. This one would always pop up in the same spot. The funny thing is, after 2 years, this stopped happening at the same time that the tongue thing started up. This comes and goes as well but doesn't seem to blister, as far as I can tell. It does seem to be more swollen at certain times. Its never swollen during the night or when I first wake up. I can reach back and see and feel the ones on my tongue..they are about the same color as the rest of my mouth and feel like sacks or something...smooth round sacks. The one, if it is the same thing, further back in my throat below my jaw I cannot reach or seem to feel. The thing that really bothers me is that no doctor has ever done a laryngoscopy (I guess that is what it is called). My ENT inserted something into my nostril that allowed him to look in and at the back of my throat. He simply relied on that CT scan and I don't think that was wise. I'm sure this specialist will do more. And to give my ENT some credit, my throat simptoms had subsided by the time the CT consult came so he really didn't have any reason to do any more and he might have done a laryngoscopy if I was still feeling bad. I'm sorry to keep on and on about this it's just that I've been looking for an outlet like this for months now and I appreciate that you know my fears and will listen to me. I'm driving my wife crazy and it is only scaring my mom. One other thing to note, I've noticed that when I grit my teeth on that side, I hear a crunching sound and a popping sound when I open my jaw, only on that side. I asked my ENT about TMJ as my mom had that and he said no. I do still have my wisdom teeth and they haven't been bothering me. Oh well, I've rambled long enough. What was your first symptom?

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#25469 - 11/13/02 02:59 PM Re: Convinced
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4678
Loc: Laguna Niguel, CA
I'll leave you a longer post later, but in the meantime use the message board search engine and fine the posts on mucoceles (without the s at the end) This will likely give you some information about those little smooth round things that have come and gone in your mouth over the years. Also as far as exams go, getting your throat and larynx as well as the nasopharyngeal area examined with a scope is a pretty comprehensive exam. Most oral cancers will show up this way. Did you get any blood work done? A CBC will show up infections if that is what you are fighting. That poping noise is the articular disc in your TMJ...given your posts here, I would guess that you are also a bruxer...(tooth grinder) and over a period of years, the articular disc can become perforated causing that noise and eventually discomfort. I do it too. A night guard will prevent this from getting worse. More later.
_________________________
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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#25470 - 11/13/02 06:21 PM Re: Convinced
DaveC Offline
Contributing Member (25+ posts)

Registered: 08/26/02
Posts: 35
Loc: MA
Hi Adam:

I was struck when I read your earlier posts and honor the intense anxiety you are feeling but agree with Brian that trying to maintain perspective is important also. It truly sounds as though you are covering every conceivable base, and provided the health care providers are credible and have a comfort level diagnosing oral cancer, it does sound like no news is good news.

Most oral lesions take approximately 24-30 months to develop so a CT scan from a couple of months ago is still a valid study(as long as it is read by a credible radiologist).

You seem to have a variety of symptoms that may or may not be related and/or dangerous.They also sound like they could be related to infection, inlammation, trauma, or TMJ s/s among other things.

I do agree that it is scary to "find things" and worry what they are...my partner, Dave, is currently recovering from having a tonsillar lesion removed. Over the last couple of months, I have had many canker sores and breaks in my mouth and on my tongue which I think are the result of grinding and biting during sleep due to my major increased anxiety over Dave's situation. I do catch myself worrying frantically(and looking in the mirror) that it's "something" because of my heightened sensitivity toward oral cancer. I will ask my dentist when I go next week to take a look so I am prudent.

However, it is also important to choose and stick with practitioners you can trust and go in peace out of their office if they tell you that everything really does look okay.

Best,

Kim
_________________________
*Stage III Right Tonsillar Ca. *Diagnosed Aug. 2002
*Surgery Sept.,Radiation Dec. 2002
*For everything else there's Mastercard.

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#25471 - 11/18/02 12:46 PM Re: Convinced
Adam Burrell Offline
Member

Registered: 11/12/02
Posts: 11
Loc: King George, Vancouver, Canada
DAVEC - Thanks for your understanding.

Just wanted to let everyone know that I went to an Oral Surgeon last Thursday to get him to look at the bumps on the back of my tongue, where all of this seemed to originate. He concurred with all of the other docs I have seen and said that they were circumvelli papillae - large taste buds. I felt fairly confident as he gave it a good look and seems knowledgable. He also took a panoramic x-ray of my teeth and said that I have some major paradontal disease and need to have that taken care of immediately, as well as my wisdom teeth extracted. I also brought my CT scan slides with me and he took a breif look at them and told me, as Brian did that if there was a cancer of lymphatic tissue, it would light up in the CT scan. My concern is that the cancer I fear is in my throat, under my tonsils, not in lymphatic tissue and might not have been seen in the CT. Anyway, I am going tomorrow to an otolaryngologist and am pretty tense about it. My CBC came back fine, by the way. My bilirubin count was up which my doctor said could indicate a false negative on the mono test. He wants to get another mono test. I am most interested in what this specialist has to say. I will keep you guys posted. I had a particularly bad "flare-up" yesterday evening. I had had a pretty good day, just a faint feeling that "something was there". Same with Thursday and Friday. Then for about 2 hours my right jaw and the right side of my throat were in pain. Felt like pressure, that if I bit down hard enought it would releive the pressure but it didn't. Just as fast as it came, it eventually went away. Just out of curiousity, is this a common thing with a tumor? Would the pain come or go or be fairly constant? Does cancer flare up every now and then or is it a constantly progressing pain/discomfort?

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