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...