I just visited my doctor to receive the results of my PET scan and I'm rather confused.

My doctor showed me the PET scan results. There is a clear bright spot on my tongue where the cancer is, which we already knew. Two of the lymph nodes lit up as well with what he called "activity". One he said was borderline and very faint, the other was a little brighter. But, he told me that both of these were close to the tongue area, and could just be inflammation. He said the inflammation could be from the biopsy I had in late December, or an infection on the tongue tumor that he discovered today. My tumor has been in burning pain for the last two days so he said it might be a staph or streph infection and gave me antibiotics. So, those two factors might explain why those two lymph nodes had activity.

He said that the only way to be sure is to have a pathologist check them after surgery, scheduled for next Wednesday. Then, if one or both do contain cancer, then they have to see how the cancer is behaving and order radiation or a combo of radiation and chemo to stop the spreading.

Anyhow, I have to admit I was disappointed because I was hoping it was localized to the tongue and that it would be pretty cut and dried - stage II, solved with surgery alone. My understanding is that if indeed it has spread to one of the lymph nodes, that would bump it up to Stage III. If it is found in both, then it would be Stage IV.

I know that the odds dramatically decrease depending on the stage, so I'm very nervous now. I know that it's fair to say they won't know until they dig around in there and that the real diagnosis will come after surgery...but I'm still very scared about it.

I realize that a lot of members on this board do have stage IV and have beat it, so those stories are very inspiring to me.

The other question I asked my doctor is if it does turn out to NOT have spread to the lymph nodes, and surgery is done for the hemi-glossectomy and SND, how will they know that it was successful? But, he said they will never know for sure. Does that sound right? He basically advised that I will be checked up on very routinely but it's hard to say if it's really "beat" until it hasn't recurred for 3 - 5 years. I sort of assumed that if it is Stage II and they believe that surgery has removed everything, isn't there some point where they would run another PET scan and declare victory? He acted like that wasn't the case. But, that seems strange to me...wouldn't you want to be sure that what you did was successful?

Any feedback you have would be appreciated. Maybe this is normal but I just expected to have more concrete answers at this point and especially after the surgery is done. Could be wishful thinking, but in the back of my mind I'm still a little suspicious because it is an HMO and maybe they don't want to pay for another PET scan post surgery.

Thanks,
Gina