1. They don't do PETs in Ontario, Canada. I had my 3 month follow-up contrast CT 2 days ago which I understand cannot differentiate scar tissue from residual cancer like a PET. Also, this CT is only scanned in the H&N area.

I was told by my RO's nurse today that it looked great. There are 2 residual nodes left, both less than 1cm (I anticipated this because I can feel a sliver, barely, where the original golfball tumor was). In this case, she said I will get another contrast CT in 2-3 months but she is confident at that size, it is scar tissue.

I also read somewhere, cannot remember the article, where residual nodes under a certain size are rarely positive when dissected.

Should I be concerned?

2. Where my tonsil was removed, there are now a couple of fibrous lines that are creamy colored. It does not look like white SCC patches, they are not open sores and there is no inflammation. I'm wondering if after radiation and being so dry in there, the tissue has healed that way. Of course, I also wonder if it's SCC as I have no idea what it would look like if it grew in the area again. I don't see my RO until March 23.

3. New lymphadema/turkey neck almost 3 months out. Normal?

Well Roger, Canadian Cancer Centers don't seem to do PETS routinely in other Provinces either. I will thank you, as 8 years after being diagnosed I finally went and tried to do some "research" online about the efficacy of contrast CT's vs PETS. It definitely has been a major difference between the US and Canada.

It is extremely difficult to decipher which protocol is better as all the tests have variations. The only real information I gleaned was that for the BEST diagnostic efficacy for oral cancers - a combined CT/PET is the Gold Standard. Neither Canada nor the US employ this "Gold Standard" routinely.

The Silver award goes (marginally) to the PET. Bronze goes to the contrast CT but the percentage difference between Silver/Bronze is minimal.

I wasn't clear about the two residual nodes. Are you saying there are two nodes remaining in your lymphatic system which are showing signs of cancer? Or are the two nodes just showing hardening/effects of treatment?

Sounds like the changes in your mouth/throat are completely normal as is the turkey neck. One week my neck on one side sort of "blew up" due lymph swelling. Scared the hell out of me - totally normal and yes, it went away. Get ready for the changes that radiation will bring over the years - it truly is the gift that keeps on giving!

From a fellow Canuck.

Donna

Hi Donna, yes, there are 2 tiny nodes remaining 3 months post treatment.
They are both less than 1cm.
The RO is not concerned, and I suppose he is basing it on his experience and studies, for example...

"The absence of lymph nodes larger than 1.5 cm and lack of any focal lymph node defect on post-RT CT 4 weeks after therapy had a negative predictive value of 94%. Similar results were reported previously."
http://jco.ascopubs.org/content/24/9/1421.long

I will get another contrast CT in 2-3 months to see if a neck dissection is warranted. Although I do not like that there are residuals in there, I know that a neck dissection may leave me with some numbness and physical complications. What scares me is the minor possibility if I do need an ND, at least 6 months has passed that I would have had an active Ca in me, let's hope not.

1. My friend works for the head of two hospitals here - PETs they don't trust them too many false positives. (he's also a surgical oncologist) See if your ct machine is a 3 tesla machine that picks up the most minute findings. You can also pay to have a PET -though the drs may not refer to them as they like to have their tests in house and read by someone they know/trust.

2. I am always concerned... Keep a close eye on the area for any changes but I would seriously quiz your dr. To ease your mind

3. Ditto to what Donna said... I have a tiny gobble gobble on my un dissected side, full face lift on my dissected side! I think it's from the swelling as both sides were radiated...

Good luck.