Hi all,

I'm not sure what to do...

My pet scan has lit up on my tongue and a little on the remaining nodes on the right. The tongue I have no doubts about: I can see it in the mirror, it is a bit painful occasionally, so I'm fairly convinced that there is something there. The neck, on the other hand, I am feeling decidedly unsure about.

My past rads have left me with a crap immune system, and that coupled with the fact that we have a toddler who goes to day care a couple of times a week means I am almost constantly fighting off some sort of URTI (it feels like almost constantly, anyway).

My questions are: does anyone know whether infected nodes will light up a PET, and should I push for a needle biopsy of the nodes before signing up for the neck dissection.

My surgery is scheduled for July 24, just over two weeks away, so there should be time to look into it further.

Cheers
Julien

PET scans are notorious to give false positive results due to inflamation, scar tissue, etc. Ive had it happen to me as have many others here too. Mine lit up like a Christmas tree only to have my next one come back clear and the next one was positive in yet another spot which actually was a recurrance.

I now only trust a biopsy to tell me if I have something to worry about or not.

Hi Julien,

I've never had an accurate PET scan! I've had negative PET scans when I had positive lymph nodes and false positives. My CT scans on the other hand have always been accurate and I now have much more faith in the accuracy of those results than any other diagnostic tests. I've even had FNAs (needle biopsy) done on positive lymph nodes that came back negative!

This probably doesn't help you much but if you if you had a CT scan with the PET it may have shown enlarged nodes with necrotic centres in which case I would go ahead with the ND. (When I had my ND they actually took the suspicious node first and did a frozen section to confirm the cancer before proceeding further)

Are you having your surgery in Adelaide? You sound like you have a great positive attitude!

All the best to you and your family from a fellow Aussie.

Sue

IMO: PET scans are essentially worthless for tongue cancer patients since all they measure is sugar uptake and in my case, 4 times failed to distinguish normal tongue area tissue recovery from cancer. As bad as the false positives of a PETscan on Tongue cancer patients are, even worse were the false negatives those PETscans showed that lulled my doctors and myself into thinking my first TX was successful.
The head of the entire Nuclear Medicine department at my CCC took the time to sit down with me and show me screen by screen just how the colors and images worked and sure enough normal tissue that was healing did indeed look like cancer. They appear to be a great tool for almost every other type of cancer and even most oral cancer, but there is a solid basis for being "unsure about PET results" if you have tongue cancer. My doctors at the CCC are unanimous in having me get MRIs now instead of PETscans. Every MRI I have had has been 100% accurate.
Charm

I have never had a PET. My doctors have always gone with CT scans with contrast.

Thanks for the responses guys.

Sue, yes I'm having my surgery in Adelaide. I think I will talk further with the MO on monday (first time I'm seeing him, so it's kind of a second opinion opportunity), and ask my surgeon about the possibility of doing frozen sections on the node before going further.

Cheers
Jules