I haven't visited this group since undergoing radiation in Feb/March 03. I was doing great until they found a node in June that is positive. I'd like to know what I should expect from this surgery - recovery, survival, etc. I'm also wondering why they don't check for nodes that are positive before removing all of them as I believe they now do with breast cancer (which I've also had twice, but before they did that checking of nodes). Won't taking all my nodes destroy my ability to filter cancer cells if I get a reoccurrence in my mouth?

Hi NannyGranny -- we have a lot in common... I finished my radiation in January (for tongue cancer) and then they found a positive node in May. I had a radical neck on June 4 and begin another round of radiation tomorrow (along with some chemo this time).

I'm not sure how a "modified" radical neck will be different from my full-scale radical neck. In my surgery, they took out 30 nodes, a muscle (whose name I can't pronounce), some nerves and my jugular vein on that side.

Honestly, the biggest thing that has given me trouble (aside from a swollen throat from the breathing tube they used during the surgery) has been my shoulder and muscles all around it. Since they took out a muscle that connects my shoulder to my neck, everything else is all out of whack... I would ask a lot of questions about that, and if they are taking out the muscle, see about doing range-of-motion exercises as soon as you can. I didn;t do this, and I'm really paying the price now. It hurts almost all the time, sometimes pretty severly...

I have the same questions you do about the lack of nodes on that side and what that means for filtering cancer cells... WIll be interested to see what others say...

As for recovery and survival stuff, it's never a good sign to have the cancer move into your lymph system. But my docs are still using the word "cure" with me... I had one positive node out of the 30 they removed...

Is your positive node within the field of radiation from before? Ask your docs, too, about extra-capsular spread. My lymph node showed this, which shows that the cancer was "busting out" of the node and trying to find a new home. This is a sign of more aggressive cancer...

Best of luck to you in your upcoming surgery... God's blessings to you...

Eric

Hi NannyGranny,

I don't know the answer to your question but I am curious what others may answer, too. I had two positive nodes that showed up initially through the PET/CT scan. I was sure they were and had been seeking out an answer for many months starting with the swelling of the first one. It eventually grew to the size of my thumb and I could see the lump when I looked in the mirror yet I couldn't find anyone that was concerned and didn't know what I know now, unfortunately.

Because they knew my cancer had already spread and I was stage IV, the plan was to give me large doses of field radiation on both sides of my neck and if there was any residual, do the neck dissection then. They spoke of the surgery in October because there is still a lump where the original lymph node was but it has not lit up on the PET/CT scans so the general consensus is no surgery.

Good luck on your surgery and I am praying for comfort and continued healing for you and guidance for your medical team to find the best treatment possible for you.

Ed

You'll want to verify this and friends correct me if I'm wrong, but I think part of the reason they want to remove so many nodes is that the scans are only good for a tumor no smaller than 2cm. Any smaller and they won't show up. It may be that it's better to remove so many suspected nodes while they have you open than to remove confirmed positive nodes and then risk leaving cancerous nodes and have to go in again or worse: have distant metastatis as a result of leaving undetected positive nodes.

I didn't have surgery, but I did have radiation to "fry" the nodes on both sides of my neck. I don't know how that will affect my ability to "filter" cancer cells in the region. I would be interested in the answer to this if anyone has an opinion.

Anyway, best of luck with your surgery.

-Brett