Hello, thank you in advance for taking the time to read this post. I have been visiting the site for over a month now, and am touched by the genuine care and support you provide for each other.

I am in need of everyone's advice. I am not going to go through the stereotypical "list symptoms and beg for diagnosis" bit, since I know the answer that I'll get, but let me give a quick backstory:

I am a 27 year old male. In decent physical shape, only with poor eating habits (lots of pizza/burgers/sweets, almost no vegetables). I have never smoked cigarettes but smoked a lot of pot with few breaks in between for the last ten years until stopping for good several months ago. I am also positive that I've been exposed to HPV since I have had oral sex with quite a few girls over the years being a single young man, meaning around 20-30 at least since becoming sexually active.

Last fall I noticed a sort of tightness under my chin, it felt like something was pulling my tongue towards my adams apple is the best way to describe it. It would throb off and on but it didn't diminish my quality of life or anything so I decided to wait it out. Over the winter, it either went away, or I stopped noticing it. Also, whenever I would take a hit of marijuana that one area would feel soreness when I inhaled smoke.

A few months ago, the feeling came back and was noticeable again. Mentioned it to dentist who couldnt see/feel anything, told me to go to my primary care who said the same thing and referred me to an ENT. While waiting for the ENT appointment, I noticed when I drank, ate something, it felt like something was stuck after, as if it was a foreign body in that one part of throat (left side). I freaked out, went to this website, went to every other website and convinced myself I had HPV throat cancer. Couldn't sleep/eat out of fear. Also started noticing new symptoms like ear pain, neck pains, but was poking at my neck quite a bit to try and feel something which might have caused the soreness, and the ear pain was something I had to think about to notice it (if that makes any sense), and was maybe a 1 or a 2 on a 10 scale.

So I got into my ENT appointment, was visibly scared, relayed my fears to him, and he didn't seem to take them very seriously. He did a visual exam with mirror to back of mouth, stuck his finger down my throat, and prescribed some strong Augmentin antibiotics. I was not satisfied with the visit as he kept telling me to relax etc. not worry about it. I took the antibiotics and after a few days, the feeling of something stuck in throat was gone and I could feel food and liquid hit it just fine, but that particular area (where something felt like was there before) was very painful when I would breathe through my nose and the air would hit it. After a few days, the pain got better, but I still felt strange discomfort.

Went back to the same ENT for a follow up, and this time he was more attentive, and did scope through the nose, and said that he didn't see anything that worried him, but I talked him into ordering a CT scan and he obliged.

I got the results of the CT scan, (CT WITH CONTRAST DYE) and it said that there was nothing unusual detected on the scan. When I went in for the scan they asked me if there was any palpable masses and I mentioned a lymph node that felt swollen on same side, and they put a sticker on it for the radiologist to note. He wrote that it was a 1cm lymph node considered normal.

So I was still not satisfied because I keep reading about CT scans missing throat cancer, and I knew that my ENT wouldn't change that so I did like you all say and called a cancer center: Mass general. They referred me to their oncology surgery ENT department and I had an appointment there today.

The ENT surgeon talked to me, looked at my scans, and scoped me a little more thoroughly than my first ent. I mentioned HPV throat cancer and he seemed to know that it's typically found in tonsils and base of tongue. After the scope he said he did not see anything bad, except some slight irritation from acid refluxing and perhaps some post nasal drip. He made a follow up appointment in 3 months.

But somehow I still feel like I am not satisfied. He said there weren't any other scans that could be done. I guess I just want to know what to do next, should I keep going to ENT's every week, or just accept this. Also, a lymph node near my groin has been swelling this past week which makes me think I have cancer and it has spread to my pelvis. I know this seems insane to anyone looking in, but I am just having a real hard time or it at this point. Any advice?

Some folks will say to keep getting opinions until you are comfortable with the diagnosis. If you look at my signature below, you will understand the value and the quandary of second opinions.

Some people will say don't look for trouble if none is evident. But, we know our bodies and when something is amiss, we usually know it.

I would say to be watchful but don't let it consume your life. After having enough opinions to tell you you don't have anything to worry about...stop worrying. At some point you will need to, and be able to, trust your doctors. Life is too short to waste on unnecessary worrying.

Wow...I just read a novel....well done. Sorry that may have been an insensitive joke, I understand you're obviously frightened but let me try and talk you back from the ledge a bit. Reading your post I think you've wound yourself up a bit.

Let me applaud you for taking all the right steps and being thorough, you have to be your own advocate, I firmly believe that. However there has to be a point if you've seen a top notch medical professional that you take their opinion and pet them ease your mind my friend. Mass General is a great facility with a well respected otolaryngology dept, if you can't take their opinion then I'm not sure where else you could get a much better one.

Keep vigilant of course if you have risk factors but it sounds like you are letting worry take over. PET scans and CTs have a fairly low false negative rate and you've had great medical opinions so let your mind ease and don't let worry win.

Good luck

Eric

...if it does turn out you have oral cancer, this is the best place for information and understanding. There is lots of care and support here. And, part of the care and support goes towards putting fears and worries to rest.

Wishing you peace,

Sandy

Oh... hittin the ganj can cause paranoia and you should vaporize not smoke it, you use less and get more...

Did the ENT prescribe anything for the acid reflux? There are plenty OTC ones that you might try and see if that irritation goes away.

Thank you guys for the responses. Eric, no worries; I think you're the man, and as a matter of fact am actually currently working on a real novel.

As far as pot goes, I'm done...if I decide to ever do it again, it'll be a vaporizer.

Sandy and David, thank you for your responses as well...I am more calm after seeing the doctor, but I don't know if I'll feel back to normal until my throat irritation disappears....

David, we didn't discuss reflux meds, but I am going to be changing my diet accordingly, it's high time to do that anyway.

I guess what I am wondering is: if I am feeling these symptoms, and many people don't even feel anything before diagnosis (aside a swelling on neck), would two trained ENT's, one of whom is a cancer specialist, both instructed on what to look for (HPV throat cancer tonsils/base of tongue) be able to pick it up?

I also asked the doc if HPV throat cancer always presents itself on the surface and he indicated yes...

As I type this, I am thinking that I want to apologize for wasting everyone's time with this. People on this forum have been through a lot, and I don't want to take advantage of people who have had their lives affected so dramatically, but I just feel like you're the ONLY people who would understand...

No need to apologize as far as I'm concerned. Actually it was a welcome change of pace for me to read about someone who actually got a CT scan and not one but two ENT exams instead of just ignoring possible symptoms of oral cancer and then get an all clear. We really are sorry when we have to welcome someone to our oral cancer club.
My advice is to RELAX . This cancer is terrible but mostly because we don't catch it until it's very advanced. Like Michael Douglas said in his interview, Stage IV is not what you want to hear. Get a CT every year, if you have a tumor, it will eventually grow enough to show. I have never heard of a CT/MRI scan missing a tumor large enough to cause trouble. PETscans, yes, but CT/MRI no.
We certainly understand your fears, and I hope this has all been a false alarm for you.
Charm

You really might want to take something for Acid Reflux. I had the same feeling in my throat I thought I had throat cancer too. My Surgeon at Moffitt Cancer Center put me on Nexium for Acid Reflux. Within 2 weeks that awful feeling was gone. First I tried over the counter it didn't work for me. I'm still on Nexium and I will be on it forever. I don't want that feeling ever again. Look Acid Relux up on the computer. You'll be amazed what you read about it and what it can do.

Hope everything works out for you. I'm glad you don't have Oral Cancer.

Take care,
Connie

Man you guys are so great for answering my questions. Coming to this forum makes me feel like I know you guys personally...btw, Eric and Charm, what is a "frack"?

Connie, thanks for the advice, but I am wondering can reflux be mostly on one side? I feel stuff on both sides, but one has a very distinct feeling of "damage"...like sometimes when I breathe in, that one spot on the left feels inflamed. Also what drives me crazy, is why would I get a reaction to the strong antibiotics if it was reflux....

In any case, I am changing my diet, I have eaten basically the worst food possible for years because I have a high metabolism and stay fit even on a bad diet but this is ridiculous.

Charm: the reason I went through everything before posting was (I'm sure) one of the main reasons this foundation and forum was created. Thanks to Brian Hill, and all of you, I had a resource and knew from prior posts what steps to take (ENT, CT, Cancer Center) before trying to get ya'll to diagnose me.

I still can't shake this feeling of something being seriously wrong but I suppose I'll see what happens for now. I do feel some slight shame for asking for so much attention from everyone who has already been through, or going through the wringer with OC. But also grateful for the kind replies. You are all so smart and dignified about it all...

Your kind words are appreciated and YES, I think the OCF bunch are exceptional people. I was a big George Carlin fan and he used to rail that after he turned sixty he was not an "old fart" but rather an "old f**k". I was also a big Battlestar Galatica fan (the remake on SyFy)which used the word "frack" as the f-word. So I combined them both to put into my signature line. I would have used the f-word but it violates OCF guidelines. Lucky for me, even though Brian Hill was also a BSG fan, he's cool with this. (yikes, did I say "cool" - my 22 year old son would roll his eyes)

Eric and I lit up the OCF forum with increasingly macho posts back and forth which I precipitated with an smart ass comment about Big Pharm conspiracy posts being a sign of brain damage. Eric took umbrage and we were both off to the races. Brian closed us down but not before we both realized how much we respected each other plus my psychedelic adventures resonated with his experiences. Since he is young, Eric is more open about medical marijuana than I care to be but I agree with all he posts on that
Now take care of yourself. Diet is important. take a look at the thread in the adjunctive therapy forum I posted. You also should consider taking a probiotic for gastro issues. My wife has had great results with Align (recommended by her gastro doc who urges all his patients to take probiotics since in his experience they work) although the July issue of Consumer reports rates it last behind Culturelle and Phillips capsules.

@figuringitout: I don't want to alarm you, but SCC HN isn't always seen on the surface. One of the reasons J had a diagnostic tonsillectomy with random oral biopsies is because his ENT thought the primary tumor could have been "hiding" deep in the tonsils. No primary tumor was located which is known to happen.

Regarding your reflux problem, J's new ENT diagnosed him as having reflux...he's had a throat clearing problem for as long as I've known him (over 28 years). The ENT saw irritation on one side and asked him what side he slept on and they matched. (And no, guys, he didn't get it from sleeping too close to a crack ...) He prescribed Prevacid, told him not to eat after 7 pm (about 3-4 hours before bedtime), and to elevate the head of the bed...not higher pillows...more like a wedge to elevate his upper back, shoulders and head.

Incidentally, what kind of reaction did you have to the antibiotics? Sorry if I missed that part. I re-read your post but didn't see details. The first thing they tried with J was a course of antibiotics which launched him into a horrible series of throat problems, allergic reactions, and eventually thrush. It was very painful for him.

I'm glad that you have found some help here to make you feel a little more comfortable.

Sandy

Just an FYI, Mass Generals ENT program is ranked 2nd in the US next to Hopkins, literally one of the top programs in the world. I would have to say if you've gotten an opinion from that program after seeing the scans etc that you should ease your mind.

Charm- ok I get it now. Much more simple than I originally anticipated

@Sandy, thank you for the advice. How is J doing now? I can't imagine what it would be to go through all that and then stumble onto a misdiagnosis...

As far as surface vs. non- I asked the doc and he answered yes, but I think we were talking about specifically HPV throat cancer, or maybe I am getting something mixed up. However, my symptoms were noticeable to me when food/water touched the spot deep in my throat initially, and then after the antibiotics, when I would breathe in and the air hit a spot on my left side of my throat I felt pain. So I am assuming that if there is something there, it should be visible on the surface since food/water/air all touch the surface and do not go deep into tissue.

The ENT I met with yesterday teaches Otoront...whatever, ENT classes at Harvard Medical school, so I guess I will have to trust him and wait for the follow up in 3 months.

In the meantime I am going to try some stuff for acid reflux and change my diet altogether. I think there might be some allergies involved too as sometimes my throat will want to close up a bit or sting when outside.

I think I want to continue being a part of this forum regardless the outcome if that's ok with everyone.

@figuringitout: Thank you for asking about J. He's still very angry, is still having problems related to Erbitux, misses his teeth that were pulled prophylactically, but seems to be pretty much fine. No signs of cancer! But, he's going to have a scan when he goes back to the ENT next month. So, we'll find out if anything has developed. Thank you so much for asking!

HPV+ cancer does hide deep inside the tonsils. Actually, the two main areas where HPV+ OC strikes are the tonsils and the base of the tongue (BOT is the acronym if you see it around the forum.)

So odd about the increased pain after you took the antibiotics. Joel had a similar reaction to antibiotics when he was first seen for the swollen lymph node (branchial cleft cyst ?). But, in addition to severe pain, both sides of his neck became very swollen, he began to run a fever of 104 f, and he wound up with an excruciating headache. He was perfectly well before he started the first antibiotic. His doctors switched antibiotics and he broke out in an amoxicillin rash (no anaphylaxis). At about this point his throat was so painful he wouldn't eat or drink. He had a trip to Emergency and a 4 day stay in the hospital. By the time he got out of the hospital, he had been prescribed 5 different antibiotics, steroids, numerous painkillers and an antifungal for oral thrush. I suspect he had thrush and not an infection after the first two antibiotics. Whatever. That's how we spent the entire month of November, 2010. But, we're both still very thankful that he might not/doesn't have cancer.

I'm glad that you are starting to trust your doctors. Believe me, this episode with J has given me plenty of reasons not to trust doctors and it has very little to do with what happened in November. It has been a nightmare and I have had to question and verify information at every turn. Still, at some point, I have had to learn to trust--especially with the new ENT who does not think J has cancer.

Regardless of what happens with your throat problems, welcome to OCF! You are going to learn a great deal...and probably make some good friends, too!

Sandy

If you are having reflux it should be treated properly as it can lead to serious problems.Before you self medicate see a gastroenterologist. It would be wise to ask the ENT who diagnosed the reflux to make a recommendation and have him forward his notes and results of all exams to the GI. There are several types of drugs and combinations of theapy and diet for acid reflux and you may have to try different ones to see which works best. A gastroenterologist is the best guide for this. The GI may have samples for you to try before you get a rx filled. If your insurance requires a "trial" of one different than prescribed and it has proven ineffective ask the doctor to write a letter of medical necessity to the insurance company.

Go organic on the diet as much as possible, get a reverse osmosis water filter, read up on cancer diets. Treat your body right, don't stress over work. Exercise!

Wish I had awareness of HPV when I was your age and could have cleaned up my lifestyle and thoroughly detoxed.

By sweating about this now you will probably avoid an HPV related cancer when you ar 50 to 60.

Get a gardasil(sp?) vaccine (3 shots).

NO more ganja. Good luck!

Hi Malka, thanks for the advice.

I do plan on seeing a gastroenterologist if my symptoms do not get better in the next several weeks. I just want to see if the damage I already have will heal up as I am still not convinced reflux is what's causing my problems...

I just keep noticing all these little symptoms when I become fixated on them, and they all bother me throughout the day and feel like they are coming from different places... it's an awful feeling and mixed with fears makes me doubt my ENT's and CT scan results.

Bill,

Thanks so much for taking the time to write. I am trying to make changes. I do exercise and am adding veggies and subtracting crap from my diet. I just cannot shake this feeling that something is seriously wrong as I still have this weird feeling in my throat and cannot pinpoint where it's coming from. It feels like a slight soreness almost like a mild "throbbing" sensation.

Plus my initial symptoms were a feeling of something in throat, where food and water felt like it wasn't hitting it, after antibiotics it turned into pain when breathing in through nose, which has subsided to where we are now....

Also have occasional pains along jawline, and above and to the left of Adam's apple, where the original "tightness" began. I know I am rambling and must sound crazy, but I just keep having this fear that something is growing in there, and was missed my scans and 2 nasal scopes.

Again, I am sorry to take up space with this since you all have real, diagnosed problems, but this is the only resource that gives me comfort...