Hi, pulitzer
My husband's FNA biopsy of his lymph node showed necrotic tissue, but not the cancer on the interior surface. The initial CT just showed the node. Fortunately, our HMO ENT was suspicious and escalated him to a Metrohealth doctor, who ordered a PET - that showed the tonsil tumor and the node. It is pretty scary that the initial test were negative (and a surface biopsy would have been, also). I am very thankful for the doctor's suspicions and skills!

The takeaway point seems to be, if things don't seem right and the initial biopsy is negative, insist on a PET scan.

This statement is counterintuitive.

"Also, my Oral HPV test will also come back this Thursday, not that I am going to put a lot of weight into it, unless it is positive, in which case, will have to go for the whole hog - biopsy, CT, MRI or PET."

If the test isn't going to weigh much on you, then why would a positive cause you to throw the kitchen sink at things?

You may find there is nothing to biopsy at this stage, so I suppose you could ask for a PET/CT, but my guess is you will have to private pay it as our insurance will likely turn it down without some strong suspicion from your doctor that he is not on a wild goose chase. Your direction is really going to be dictated by one thing - you are seeing a doctor that has experience with these very hard to discover cancers.

I hope you get an answer.

My cancer was found at Stage I twice. I had a tumor inside my cheek. Your assumptions are not correct. There are many people who come to this forum with a suspicious spot inside their mouth. Of course not all are cancerous but sadly many are. If you have spent any time reading this forum Im certain you would have come across many posts by people who were new and afraid. Their fear was due to having a 'spot' inside their mouth weather on their tongue, cheek, or back of throat. Take a look at the signatures, Im sure you will see several Stage I and II's. I hope you do follow thru and get yourself properly checked out on Thursday. Best wishes!

"The takeaway point seems to be, if things don't seem right and the initial biopsy is negative, insist on a PET scan."

Not necessarilly, but that's where the doctor's expertise comes into play. That is why there is so much emphasis on this forum about seeing a doctor experienced in oral cancer that you can communicate effectively with, and on having any treatment evaluated by a team.

Well put Maria!!

Hi there - usually a scope would pick up base of tongue cancer unless it's tiny - I could be wrong but most HPV + cancers are found in the nodes first because the patient remains asymptomatic - not because a scope missed something. So he'll probably suggest a scope and if here's anything suspicious he'll schedul you For a biopsy... Good luck!

The ENT does not want to biopsy anything - thinks it may be laryngopharyngeal reflux, but is happy to see me back if I continue to have symptoms after 4 weeks of antireflux medication.

This board if full of incredible people who go above and beyond anything I have ever seen.

The oral test was negative for what it is worth.

thanks for all your comments

i too have had those back of the mouth ache or geez i never felt this before anxieties. i have had biopsy after biopsy, but some of what i feel is side affects of rad treatment. every day is a new challenge, no?

Definitely everyday is a challenge - I feel good - however there's always that what if... So I get it! Pulitzer - so glad things are good for you!