The flex scope can see the top of the bot, but the BOT also has deep musculature that can't be seen, and that makes the BOT more difficult to treat if it is cancer. HPV related does not have the typical signs like tobacco related cancer does, and often has no signs or symtoms of cancer until it's advanced, and often the first sign is from a swollen lymph node. I had three office flex scopes that nothing could be seen from, however, they knew there was cancer from the lymph node FNAB. A triple scope, under anesthesea, with biopsy, found the tonsil was the source.

It's interesting Paul...

When I went to the first ENT, we spoke at length prior to the exam. I told him my history and asked him point blank not to pull any punches concerning his opinion of my condition. Mind you, I had no symptoms other than a swollen gland on the left side of my neck. However, it hadn't responded to two rounds of antibiotics.

He scoped me and all it showed was a little irritation in a couple of spots. Being that I was a smoker for most of my life it wasn't unusual. He looked me in the eye and said "This is cancer. I don't know what type but I've seen enough of this to know". He did a FNAB and indeed it was SCC. I had consulted Dr. Google and thought I might have Hodgkins and was actually relieved to hear it wasn't. That is, until I looked up SCC! ~lol~ Dang!

Surgeries to remove the palatine and lingual tonsils plus multiple biopsies failed to find the source of the cancer. As you know, a true unknown primary accounts for only 1-2% of H&N SCCs. The team at Hopkins feel my body eradicated the original tumor sight which they believe started in my oropharynx. My cancer was treated as such. That being said, I still had no other symptoms other than the swollen gland. By the time I went in for the selective neck dissection, I was starting to feel some pressure and discomfort due to the size of the tumor and the pressure it was exerting on structures in my neck. It wasn't until the neck dissection and subsequent biopsies that they found the HPV.

The point is, the majority of cases I've read about here and elsewhere don't behave in the manner the OP is stating. I'm sure if any of us had gotten several reports saying we were fine, we would breathe a huge sigh of relief, especially in light that there were no other signs (like swollen lymph nodes). I would take those reports and those that turn out to be dysplasia any day over cancer!

"T"

Thanks for the input. I guess being the symptoms have not subsided and reading Paul's statement there is a possibility that the problem has not been found. I will follow up with the ENT and proceed to the next step. This situation has consumed my entire life and I don't eat, sleep or even enjoy daily life. Each day is worse as I keep feeling something different whether its psychological or actually real. I seem to notice everything going on with my body now and I'm always in the mirror looking at my mouth or reading the Internet which further scares me. I know I do this to myself causing further damage. All I do is cry and am in a horrible depression. I feel like life is over already. I have two young children and feel that I won't be around to see them grow. I read mortality Rates and see very little time. This is the first site that I actually came to just for support and appreciate all responses.

While I understand this site is not for diagnosis yet for support the fact that some members get so angry with the posts made by individuals who are truly fearing OC is a bit disappointing. Obviously we are looking for help. I for one do not want to be called crazy or told that is in my head. I know that my symptoms have been all over the place. One day is a sensation in my throat. Then the ear pain starts one day in my right ear sometimes in my left. Then here comes a discomfort in my jaw also sometimes on one side of my face then the other. Next I look in my mouth and start to see what I believe is abnormal. My tongue looks weird and I would guess is called the lingual tonsil looks slightly larger on one side. I don't know what I'm looking at and possibly is just normal but it scares me. I know these symptoms go hand in hand so yes it does scare me. If so many are bothered I will not post anymore. I don't want to offend anyone. I have a legitimate fear and will continue to look for answers. When I had the scope done I thought I would be content with the ent stating she saw nothing abnormal but this did not happen because I keep feeling random pains here and there. Then i see stories that scopes are not always a good test for this diagnosis. I wish I could say that it's all in my head and they are all psychosomatic but it's hard. I have small children and do not want to hear bad news. Sorry to everyone who is actually fighting this battle. My heart goes out to you. I wish you good health and happiness always and continue to be the soldiers you are. Good bless you all.

Stefsoscared,
I couldn't be more understanding about your situation. I am going through the same thing. I don't want to have cancer, but I am looking for help through this site. It's possible neither one of us have cancer, but yet it is possible we do. I had my symptoms months before I ever heard of BOT cancer and I don't diagnose myself with Dr. Google. I am not crazy either and I understand your frustration. You have a friend in me.

I think that what everyone who is not a cancer patient needs to get from these many discussions about symptoms are two things. The posters here are patients, survivors, or caregivers. We have varied experiences under our belts, but we are NOT doctors, we are not diagnosticians. You can certainly read these forums since they are public, and you can learn about the many symptoms we have all had, finds and misses by our doctors, and so much more. Bottom line what you can't get here is a medical diagnosis.



Said with respect to Portland. Clearly something is wrong with you to be having symptoms. Is it cancer? No one here knows. You have asked for advice on what to do, and people here have generously listened and offered you advice. But more than that what do you expect them to do for you? I mean you have 53 posts now in one month. That is almost two a day every day. I get that this is emotionally hard for you, but we can't be your emotional support group.

As someone who had his cancer missed by my dentists and doctors, I get how difficult this can be. But your answers are not here on this board. They have to come by going and seeing multiple doctors until you do find out the answer to what is causing your problems. Doctors, like any profession, fall into the great, the average, and the not so great. Keep making the rounds of new doctors until you get a diagnosis.

But to continue on here is fruitless. No one is unsympathetic to your situation. But you have exhausted every bit of knowledge that we as non-doctors can give you. I think you need another professional opinion. A fresh set of eyes looking at your problem, perhaps additional biopsies. But that is all going to happen out there in your world, not here on these boards.

If you find that you indeed are one of the unlucky ones that is part of the oral cancer family, then please come back to us. But posting on here multiple times day after day, is not getting you closer to what you need. A medical diagnosis.

If anyone could shed some light for me I will appreciate it. In the past 2 months I noticed what started as one spot on my tongue which now I have learned is 4 in different locations. One at the tip of my tongue, two on the left side and another one which I found out yesterday at the very back of my tongue. They do not appear red they appear more like pink but I guess my tongue looks whiter than normal. Anyway, Sunday I visited the dentist who did not know what it could be but the next day I went to an oral surgeon. He also stated that he was unsure and did a biopsy. He checked the rest of my mouth and saw no other abnormalities. The part that has me puzzled is that all my symptoms are on the right side but I see the spots on the left. Does cancer present this way? Is it possible that I can have my entire mouth affected? I thought my tonsil looked a big larger but he made no mention of it so maybe it's just me. However I feel pain on that side. I'm just wondering being that I waited 2 months for the biopsy could I have wasted valuable time? (I visited the ENT, Dentist, and primary several times) has anyone ever had these spots associated with there situation? They are not raised at all and honestly look like my skin peeled off. It just worries me because it started out the clear blue. I had a full physical, dental check up, and ENT check all in July and none of this was present. Any response will be appreciated. I try to refrain from posting not to annoy anyone but please help.

We are not doctors of any kind but it's good that you were looked at by a dentist and an ENT and they did a biopsy so let's wait and see what the results are.

It could be any of the hundreds of oral conditions or co-conditions, not just cancer, pre-cancer symptoms. I would reserve to say it's not, being no doctor, and as David suggested, wait to see the results of the biopsy, which pathology not only can identify cancer, but other non cancerous conditions. Good luck.

I have had symptoms in my BOT for almost 8 months now. I had the scope, a biopsy and a CT scan about 6 months ago. All came back negative other than hyperplasia of the lymph tissue on the base of my tongue (basically swollen lingual tissue on one side). CT scan showed nothing other than minimal asymmetry on the BOT with no mass and no lymph nodes. This was after I had absolutely convinced myself that I had cancer. Before I had even seen a doctor I was convinced! All I did every day was poke and prod my neck and my glands and stick my tongue out. My face and neck were so sore this only added to my worry! Now I am only 26 years old and I know it can happen to anyone but the slim chance coupled with all of the negative results helped to put my mind at ease for a bit but still had some weird symptoms in there.

Last month I took a two week vacation and was out doing something all day every day staying super busy. Not one time during this did I ever have a symptom...now I'm not saying that all of this was in my head because the biopsy did come back as swollen tissue for whatever reason (ent thinks chronic allergies) but I am saying that when my mind is occupied and I don't have time to think about all of the dreadful possibilities my throat actually feels pretty normal! Also, in 8 months nothing has progressed in any way. The feeling in my throat hasn't gotten bigger, or worse. No glands or nodes have swelled up so I don't know. What I do know though is that I am a hypochondriac and that for those 2 weeks of vacation last month I was symptom free.

Just sharing my story