Ive been on OCF for a while now and need some guidance. I think I know what to do and which way to go but Im still a little unsure.

My recent PET scan showed a new spot that lit up. This was not there on any of the previous scans. It isnt where my previous locations of cancer had been. Both times it was in my left cheek, and the first time it was also up top by my left molar.
This spot is above my left canine tooth way up at the top of the gum but its on my cheek. Hard to describe, but you would have to stick your finger all the way up above the tooth til it stopped to find the spot.

This area has been tender for about a month and Im worried. I know the saying 'its not cancer til they say its cancer', but I still worry day and night that I have cancer again for a third time. According to my ENT, he said its nothing to worry about just will watch it. He said the same thing before when I had my second spot and I went myself to the oral surgeon for a biopsy without his referral. I do have a call in to my oral surgeon and am waiting for a call back.

Im so worried because when I stopped by the radiologist's desk to see if I could get the PET results, the nurse said I would need to talk to the doctor because of something that wasnt quite right. She said she isnt a doctor so really cant interpret the scan. My rad. oncologist told me its probably just scar tissue. Then a few days later my family doctor asked if my ENT had reviewed in detail my PET scan and I said a little. He told me the spot wasnt on any other scans and I should have a talk with my ENT again. I did have another talk with my ENT who still is saying nothing to worry about, just will watch it.

Sorry about the rambling. I just wanted to give some background about what each doctor told me and their previous actions.

Bottom line.....what would YOU do?

Christine, I can only imagine your anxiety after going through this twice already.

What would I do?? ..exactly what you are going to do...This area has bothered you for a month already, and it lights up. I wouldn't wait and see. As one whose cancer was overlooked for a long time before being diagnosed, I tell my friends that if something doesn't make great improvement in a week,...two at most...they should go to preferably an oral surgeon and insist on a biopsy.

Especially with your history, and with the PEt lighting up there as well.

You know that PET's can light up for inflammation too, so don't panic. you might have something stuck there, like a small bone, and a major reaction to that.

If I were you, I would call my oral surgeon..or my cancer surgeon...and insist on a biopsy within the next few days.

You asked for my opinion......that's it!

Good Luck. Unless it miraculously disappears by the time you can get an appointment set up, you need to go and get a biopsy. Better to be overly concerned than to wait and let something bad get worse.

I too would keep after everyone until I was satisfied with what I was being told or what was being done about it. Believe me if I had listened to the first 2 cancer docs I went to I would not be posting today.

I would definitely get your oral surgeon to look at it as well and see if he agrees this is just somehitng to keep an eye on. fwiw, every time I have had a PET, I have had areas "light up" (though not REALLY light up--they were in the grey area) that hadn't before. Each time my ENT has examined me and scoped me and done an MRI as well and told me I have nothing to worry about, that these are just areas that are chronically irritated. And since my last PET was 6 months ago and nothing has changed in terms of what shows up when I have an exam, it seems he has been right so far.

From my (limited) understanding, it does make a difference how MUCH the area lights up. MY MO says a tumor will usually *really* light up and not be in that marginal zone.

Don't know if this helps or not - I can see why doctors at some (top) institutions think PETs are more trouble than they are worth!

Nelie

ChristineB,
"I had my second spot and I went myself to the oral surgeon for a biopsy without his referral."
Have you got the biopsy results yet?
Prior to the biopsy, if you put your finger on the spot was it mobile? Could you feel it from the outside of your cheek?
I admire your perserverance by seeking a second opinion and biopsy especially with your previous history. Lumps, bumps and sore spots in the mouth that don't resolve on their own in 14-21 days should be investigated.
Did the biopsy completely remove the lesion?
I would really not sweat about the PET scan at this point as the biopsy report should be definitive.
If I can answer any more questions or be of help let me know.
My thoughts and prayers are with you.
Cheers,
Mike

Mike:
The biopsy results from my second spot was cancerous and surgery removed my the spot on 4/16/08. There were alot of complications afterward and I spent 10 days in the hospital. Margins were clear. I dont remember if it was mobile or if I could feel it from the outside. If it does turn out to be cancer, then this will be the third time since 6/15/07.



Nelie & Colleen:
Thanks for the info about PET scans lighting up for inflamation and not only when its cancer. That does help to ease my mind. I will hear from my oral surgeon tomorrow morning if he will do the biopsy or if he wants to consult with me first.

David:
Ive gone from doctor to doctor and will continue to do so. I want a definite answer if its back again or not. Last time, I just had a really bad feeling that it came back and I was right. I know you would camp out at the doctors office til you were taken care of

ChristineB,
I'm sorry I believe I misread your post. My bad.
The new spot is why you called the oral surgeon and are awaiting a call from him, right? You have not had it biopsied yet.
Has it changed or become larger or more painful. Is it mobile?
I'll try and read through my A.D.D. next time.
All the best,
Mike

Mike:

It was very easy to misread my post since I rambled in 10 different directions.

You are correct, no biopsy yet but the call is in for my oral surgeon.

Its just sore, Ive been taking pain meds for it so Im not sure if its gotten worse or not. Dont think it got any bigger and its not mobile. If you take your finger and put it on your left canine tooth and go all the way up its on my cheek at the very top of the gum.

That area Im sure got some of the radiation from my 1st cancer, and it was outside of the area of my second cancer. Thats why Im doubting its scar tissue.

I do have alot of dental issues so maybe thats all it is. Full dentures have been recommended since my teeth are now all crooked and loose from the radiation. Currently, I have severe trismus and can only open my mouth 2 tongue depressors wide. For now the dental work must wait til this is resolved and the trismus isnt so bad.

I was going to call Jerry's office and take a ride down to see him when he gets back from vacation but really hate to put this off any longer. I appreciate your help, thank you.

Wow, Christine, I'm so sorry that you have to deal with one more area of concern. We will be thinking of you and hoping for the best!

Nelie,

The Pet scale was explained to me as follows: The scale goes numerically from 1 to 25 in increasing brightness as the more metabolically active the area is (more uptake of the glucose) the brighter the area will display. They don't usually associate a reading less than 4 to be cancer suspicious but the greater the brightness the greater the chance of cancer.

My Pet reading was a 3.9 and without my follow up biopsy I wonder if I would have waited unnecessarily to start my Tx.