I am interested in knowing more about HPV in mouth. I have recently noticed that the entire back of my tongue has bumps some small and some more prominent. I have been to the ENT 3 times but he has never done a direct scope only looked down my throat with a long mirror stating at he does not see Anything. I pointed out the bumps and he states that it is normal. I also showed this to the dentist who stated the same thing. I have always noticed that my taste buds are a bit prominent but these bumps go beyond that. It gives the sensation of a something being lodged In the throat. With HPV would it be possible that bumps will spread like that. I am uttering with this right now and Ny feedback will be appreciated.

Stef,

OK now remember none of us are Oral Cancer docs, just battle tested. You have been to your normal front line dentist and he/she say's it's normal; you have been to an ENT THREE times and he/she says it's normal. They both are schooled, trained and licensed to practice in their respective fields. Even if you had not gone to an ENT that would have been our recommendation. So if I were you I would stop worrying.

It's not that easy as I see all these bumps in my throat/tongue. In your experience would the bumps/lumps be present in the entire area. I stick my tongue out very far with a flashlight and I see the large bumps going into my throat. I understand you cannot make a diagnosis I'm just asking have you ever had any similar stories. I'm suffering mentally and physically with this and just looking for someone to shed some light. This just started about 5 or 6 weeks ago and I have read that OC is usually only caught at late stages. I have 2 small children and cannot fathom the thought of dying and leaving them behind. I have read so much on OC and barely come across anything encouraging. I'm not trying to be annoying but this was the only site that seemed informative. I'm a severe hypochondriac just seeking assistance.

Hi Stef,

As already mentioned, three exams from your ENT and one from your dentist and they say you're ok. I would take that as pretty good odds that you don't have oral cancer. If they thought something was suspicious, they would have said so and done more. Personally, the only symptom I had was a swollen gland that didn't go away. No bumps on my tongue, no pain, no issues swallowing. A fine needle biopsy of the swollen gland showed the cancer.

Of course we're not doctors but what you described doesn't present itself as oral cancer, at least nothing I experienced or read here. A very specific strain of HPV is responsible for oral cancers and only a very small percentage of people infected with the HPV virus get oral cancer.

If I were to give any advice it would be: Don't smoke, stay away from drinking hard alcohol and speak to a therapist about your health anxiety.

Positive thoughts and prayers

"T"

I understand what you are saying but the fact that I am experiencing intermittent ear pain sometimes in both ears but mostly the right and the sensation of something in throat I do feel like I have a legitimate fear. Each time I look in my mouth it scares me further. I pull out my tongue as far as I can with a cloth and its disgusting how I have all the bumps some big and some small. When I look at the pictures online It appears in one spot. This scares me because if I should have cancer it now makes me feel like it spread throughout my entire mouth. I don't want to seem crazy but this forum was put in place for support and information. I'm fairly young and do appreciate your comments and insights. Please continue to shed some light on this. I'm scared out of my mind.

Perhaps you should consult with a Comprehensive Cancer Center and get the ENT to scope you like Memorial Sloan.

Well i went to another ENT doctor and she scoped the throat and stated that she did not see any abnormalities. she played the video back for me and showed me my tonsils, tongue, vocal cords and cheeks. although i did not know what to look for she stated nothing looked bad. she stated that the bumps did not look concerning and contributed it to lymphoid tissue. Would this scope have seen the base of the tongue and the orphanyx? Is this reliable? I say this because i just cant shake the symptoms and i am still afraid.

Yes the scope can see all the way down there.

Thank you. I'm just very concerned because I am still having symptoms. So would it be okay to trust all is well or should I continue to see someone else in case something was missed. I greatly appreciate all responses from others who have been faced with the same issue. It really helps to have support. Thanks again.

[quote=Stefsoscared]I'm a severe hypochondriac just seeking assistance. [/quote]

Stef,

Based on your statement above, let me ask you... Would it matter if we said you have nothing to worry about? With all due respect, IMO, the assistance you seek would best be served by a mental health professional specializing in health anxiety disorders.

Positive thoughts and prayers,

"T"

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

Shane, glad to hear you had a great holiday. Seems like you have good insight into those symptoms too. Life ain't easy, but it's wonderful that you are cancer free.
Tammy

Back at the ENT today because of my ongoing fear. According to the doc he states that both my tonsils are red and swollen but that the right is larger. He stuck something in my nose that he says works like a scope and stated that I had lots of mucus in there which I can't feel. He has me going to see a gastro doc and an allergist now. He said he did not see anything unusual in my mouth although he did state that my nodes were a little swollen on both sides. I explained my cancer fear and he said he saw nothing pointing to this. My next step will be a catscan and pray for the best. It's hard to believe anxiety will cause this. Isn't having a tonsil larger than the other a certified sign. I'm living in constant fear day to day. What makes things worse is that while at the store today a man behind me is discussing how he was just diagnosed with OC and will be in surgery Tuesday. This was all I needed. He spoke about major pain in his face and how a catscan founf it. I'm going insane