I am not sure which forum to post this in but we did not get the "all cleared up" we were hoping for this week. Emmett's PET/CT showed that the area that is "being watched" has grown bigger and lites up stronger, it is now the size and shape of a small orange slice as well as this time a lymph node lit too.

The positives are the MRI, visual scope by Dr. and an ultrasound all showed no sign of cancer, so they were not able to do a biopsy on the area. We were elated with those results and thought the Dr. would say for sure it is just a false positive reading and probably an infection. He actually said he wished he could tell us that but in reality he is concerned, the hairs on the back of his neck are standing on end. This is the third PET/CT that has lit in this area and each time it lights stronger and larger. So he did give us a script for a strong antibiotic, said this happened before with a patient and it was an infection in a bone that is in the swallowing area and we go back in Sept. praying that it will be gone. The Dr. also gave us the symtoms that we should call him if they start to happen. So it is 3 more months of being unsettled. Emotionally this has taken a toll on both of us, physically Emmett is feeling better and the visual exams all showed no reason for concern but he is losing weight again even though he is dumping more calories down his tube. What a roller coaster ride. I am afraid and I would like to feel positive. I need to research and understand why the PET/CT will light when the MRI and Ultrasound do not. I have read here often about the PET/CT false positives and we will not do surgery without a positive biopsy first So life goes on.....

Bummer indeed. My understanding is that a PETscan can light up while a MRI, ultrasound or CT show nothing wrong because all a PETscan does is measure sugar intake. The assumption is that high levels show cancer even though an infection or even normal tissue recovery also cause tissues to take in sugar. That's why almost all PETscans are coupled with a CT scan which actually detects tumors and not infections or normal tissues. Same thing goes for the lymph node, if it's trying to fight off an infection. Tongue cancer has the highest rate of false positives of all Petscans according to some reports.
I was wondering how they were going to do a biopsy.
I'm hoping that Emmett's Petscans were as false as three of mine. According to my Petscans, my cancer had spread throughout the entire right side of my mouth and tongue. When an MRI showed the tumor had come back on the left base of the tongue, and I had to have the salvage surgery, my doctors examined the right side intensely, even snipping some for the pathologist but zero cancer there. I drew the line after the latest false positive of a PETscan and simply refuse to have them anymore. It was so frustrating to have the tumor board explain why the results were unreliable but then recommend a follow up one. Luckily my ENT surgeon put her foot down so I no longer have to deal with the type of fear and frustration being inflicted upon you both.
What a nightmare for you both.
Charm

Can't do a biopsy? Ron's ENT he did the biopsy right there in his office of the 2 spots under his chin by his jawbone. Numbed it up and shot the needle in for the biopsy and off to the lab it went and 2 days later we got the crappy news...and this was seen on CAT scan something of significance so a PET scan was ordered to make it clearer and showed the 2 spots.(acutally 3 the other one on his lung but we aren't dealing with that one, Ron said 1 surgery at a time he can only do obviously) We were hoping also it was nothing but not our luck.

They not rven really use pets here in toronto - too nrliable. Try o breath and relax - MRI is probably right! Hugs!!

Thanks for your responses to my post and words of encouragement. To answer the questions. The 1st test done was a PET/CT scan. It was the third PET/CT done since TX ended that has showed this area light up and each time it has grown in size and brightness. It is now the size and shape of a mandrin orange section. He also had scheduled a MRI which did not show any sign of cancer in the same area that lit on the PET/CT. Then he did his own visual exam of the base of tongue in the office and both him and our Oncologist did a physical exam of the area. They could not feel or see anything in the area the PET/CT was lighting up and everything looked healthy. So he set up a ultrasound so see if that test could detect the area so they could then quide the biopsy needle into the affected base of tongue area. Once again nothing showed up even though they had the PET/CT up on the screen to be absolutely sure they were targeting the right location. Several radiologists were called in to assist and they could not find any sign of an area to biopsy so they called it off.

The hard part of this all is it feels like a repeat of last summer when we kept saying something is wrong and (a different) Dr. kept saying he couldn't feel anything or biopsy anything unless he actually had a spot to do so. By the time a "spot" appeared on the outside the cancer was growning out of control inside at two locations. This time Emmett is feeling okay but he is losing weight again which concerns me. So we feel that the odds are in our favor that it is an infection and we wait....

It's of little comfort I know, but we wait with you Karen. We hope with you. ((hugs))

Christine

Well we have survived the 3 months and will be back at Mayo on Monday the 19th for the next round. His surgeon, ongologist and radiologist have all scheduled appts. to see him and ordered bloodwork, chest x-ray and the PET so we should have all the bases covered. Hopefully we will get clear results this time.

Overall we are optimistic as he is maintaining weight, has no pain or any other symptoms I recognize from the past. I do see some swelling that concerns me, he complains more often about the phlem in his throat area and he does tire easily but he is also fighting depression so who knows. (His spirits are low.) I will keep you posted after we get the results, should hear on Monday what they find. I am just praying for a definitive answer as to what is going on so we can move forward instead of stuck in this worrysome state we have been in for so long.

PS: We did have some happy times recently, we are now grandparents for the 1st time and she makes Emmett smile.
Talk to you later.

Good luck! Fingers crossed for an all clear scan!

Well we had a great 9 month visit! Every test came back "all clear"! This was great news for us so we are moving on with hope that finally feels real.

That's awesome!!!congrats!