I have been lurking around this board for months now reading stories on what everyone has gone through. Everyone on here seems to be helpful so I would like to tell my story and ask for a bit of advice. I'll start of by saying that I work in health care as a pharmacist so if anyone has any drug questions please pm and I will try to help.

About 10 months ago I got a very sudden burning sensation in the back left side of my throat. About a week after the mouth sensation began I noticed another strange symptom on my jaw/cheek. Almost a radiating tingle with an underlying lump about 1.5 cm long but very thin. I went to my dentist and PCP for an examine that revealed nothing. However, my dentist sent my to an oral surgeon (found nothing) and then sent me to a very rude ent. The ent examined me with a scope felt and basically said he was 100% sure I had nothing wrong with me. I waited for the holidays to pass by then I decide to start over with new doctors. I went to a new oral surg who examined me and said that my lump was most likely a lymph node or swollen parotid and that the size of the lump was not significant enough for a needle aspiration. He ordered me a CT scan with contrast that showed nothing. It said the lump I marked was a secondary inflamatory reponse within stensons duct. Months go by and it gets worse. I find a Johns Hopkins trained ENT in the area and get in immediately. After five vistits, a referal to a rhuematologist (to rule out sjogrens), an mri, follow up mri, blood work and 3 physical exams he is still drawing a blank. The last time I saw him was 2 months ago and its still getting worse. Mild sore throat, CONSTANT sensation of dryness only in that one spot, lumps on cheek that tingle. What do I do now?? The ENT said to check back in 6 months if symptoms progress and he would look into removing the tonsil on that side.

Here are my questions.
1. Is dry mouth a symptom of oral cancer
2. Do cancerous lymph nodes have any sensation?
3. Would a contrast CT and MRI show cancer in the tonsil?
4. The original CT was almost a year ago. Should I get a new one to compare with.


Thanks in advance for the help. If anybody needs info on rx or otc drugs please let me know.

Sean,

Welcome to OCF, sorry you having troubles but glad that you've found this website.

Since you are worried about cancer, you need to know that the only way to confirm or deny cancer is with a biopsy. A cancerous tumor will show up on a CT but only a biopsy will tell if it is indeed cancerous. Your medical professionals can give you exams until the cows come home and give you their "opinion" but if you have an exact area that concerns you, clear your mind and have them biopsy it.

good luck

Eric

Sean, sorry to read of your troubles. Eric's advice is excellent. I can speak only from my own experience with cancerous lymph nodes: there was no pain, just the swelling. I'll leave it to more experienced hands here to have a go at your other questions.

Keep us posted. And remember, cancer is only one of a jillion things that can go wrong with our bodies!

David 2

Why hasn't anyone suggested a PET? I mean they have done everything else but remove it so why not a PET?

1. Dry mouth is usually not a sign of oral cancer

2. usually the nodes are painless.

Thanks for the detailed replies. I made an apt with the ENT for monday. I think I'm going to just have to ask him for a PET scan to give me a final answer. Hopefully United will cover it. Forgot to mention that I have been exposed to HPV as my girlfreind had a cervical biopsy done that came back positive for a high risk strain.

Davidcpa. One of my clients was just treated at Moffit in tampa for luekemia. He came back just a few weeks ago and speaks the world of them. Did you have that kind of an experience?

[quote=David2]Sean, sorry to read of your troubles. Eric's advice is excellent. I can speak only from my own experience with cancerous lymph nodes: there was no pain, just the swelling. I'll leave it to more experienced hands here to have a go at your other questions.

Keep us posted. And remember, cancer is only one of a jillion things that can go wrong with our bodies!

David 2 [/quote]

I would not say lumps on my jaw are painfull. However it was a very unique sensation that made me palpate that area.

PET has a high false positive rate, still will only pinpoint an area to biopsy if the uptake value in that area is elevated...and in my area costs $6k a pop. If it's only inflammation, it will show on a PET and still need a biopsy to confirm it.

If you are going to an ENT, wny not ask for a biopsy? Thats normally how oral cancer is determined. A PET is just a waste of time and money. You will still need a biopsy if the PET lights up which it will due to the inflamation you mentioned. It seems like you are going about this backwards. Normally a biopsy is done to determine if you have cancer then subsequent scans are done.

A PET is just another diagnostic tool and since they have used just about everything possible except removing it and the patient is still complaining and he says it's getting bigger why not see what it shows?

David,

Here is my thought process from what information Sean has provided. He already knows the area that concerns him via a lump. His ent feels that the area is inflammation. Inflammation will light up the PET. Sean wants a "final" answer...which the PET won't give him. It will ONLY show an area that is metabolizing sugar at a high rate and will NOT confirm cancer. As it's been said about a million times on these boards "It's NOT cancer until a "biopsy" says it is." because ONLY a biopsy can confirm cancer.

Soo...why spend six grand on a test that's wrong 30% of the time when you already have the area you want to biopsied pointed out?

Sean...if you want a definitive answer and peace of mind, stop wasting your time and money dillying around with scans that won't tell you, Dr exams that won't tell you and ask for the ONLY procedure that will give you certainty.