Finally a begining. After TV segment I'm getting treatment. Tumor is over 5 cm, a T3 but since lymph node is 6 cm N2 he said that makes T=4 and M0. So it's T3-4 N2 M0. Going for PET and chest x-ray wednesday. Is this an MRI? Got call late and DR. could see me "now" B4 he closed (rushed to get there) so I did not bring paper to write what he said. Need half-glossectomy, more if margins are not clear. Left neck disection. Lynmph node was loose (not attatched to jaw) so mandible should be ok.. But a nerve that goes to lip probally will be removed since it runs right by 6 cm lymph node. 3 weeks after surgery radiation to begin. Probally a few chemos also. This was a preliminary Dx since he only had biopsy report and his exam to go on. Can someone put this in laymens terms for me please. Also got oxycodone 15 for pain.Just took it and waiting to see affects. He said it was 1 1/2 times stronger as the percocets. I lost 10 pnds. this month. Paper work and correct coverage WILL be obtained. This DR. will do surgery, and Wellington Hosp. is covering cost probono. This will be a "team" effort, but he said I need the surgery stat.Please TELL ME WHAT YOU THINK. PeteyB.
Ps. Also said he cwould use muscle from chest to rebuild tongue if needed.

Good for you, Petey. You worked hard to get to this point. You can finally begin the real road to recovery. It will be difficult, but you've had difficult times before and have come through them. I have a feeling that you are in better shape to fight this battle than some in your past. You keep on showing that old Petey spirit. You're gonna be ok!

No, a PET scan is not an MRI. The PET scan is usually combined with a CT. The PET shows very clear images of soft tissue growth but it doesn't show the locations very exactly. The CT shows the other structures, so in combo they show what is there and exactly where it is.

For the PET, they will give you a radioactive glucose solution by IV. This tagged glucose will be taken up by tissues with the highest metabolism. For this reason, you are not to eat before the test, nor should you exercise. NOR should you chew gum or talk excessively in the hours before the test, since you want your mouth muscles to not be over-exerted. You want the test to be very accurate and to pick up the cancer clearly. The same goes for the rest of your body. Just take it easy before the test and follow their directions.

And, as always, keep us posted.

Petey
There is a tumor rating guide on the OCF site, can't remember exactly where. T3-4 indicates a fairly advanced tumor; n2 indicates nodal involvement, M0 means no known metastic spread ( a good thing)

The PET scan isn't a big deal. As Colleen said, it's not an MRI...different technology, used for different things.

The surgery is major; there's just no getting away from that. I underwent 17 hours of it, and you can probably expect something similar. The neck dissection will take care of the lymphatic invasion hopefully; they will take several dozen nodes from your neck, shoulder and upper chest.

That's done from the primary incision on the neck. You'll almost certainly wind up with a trach for at least a few days, as well as a gastric tube of some description, either a PEG or a nasal tube. Neither of those things are problematic.

The glossectomy is the removal of the affected portion of tongue. I lost a good bit of my jaw, not my tongue, so I can't speak to that, but the grafting (referred to as a free flap elevation) is amazing. In my case, it was fibula for the bone graft, and also tissue and blood supply from my forearm. I know they do flaps from a variety of locations for reconstruction of the tongue.

There was a guy in treatment when I went through rad who had 70% of his tongue removed, and they rebuilt it with tissue from his thigh. I was amazed at how well he was able to talk, and eat.

The radiation was rough; for me, far worse than the surgery. First things first, though. Get through the surgery and then worry about the next steps.

The oxycodone is stronger than percocets; percocet is 5mg of oxcodone and 325 mg acetominophen (sp??).

Hope that helps a bit. PM me if you want
Wayne

Petey - good work. Now you need to start reading the main body fo the site to learn about all these things they are talking to you about. Start here, but read the treatment section next

http://www.oralcancerfoundation.org/facts/stages_cancer.htm

Petey,

I have been following your journey so far, but haven't commented yet. But I am so pleased to read this post. I, like everyone else was crazy with worry for you. My surgery and treatment were different from yours, so I can't really comment on that. But I just wanted to say "way to go".

I'll be keeping you in my thoughts.

Amy from MN

Petey

I am glad you have been to the Dr to get the info you need and will be able to start treatment.. Your surgery sounds similar to mine , however I only lost 25% of my tongue , I had the modified radical neck ..Meaning I still have my jugular and the muscle. I did lose the nerve. small price to pay though ! PLease keep us updated as to when your surgery is going to be..I am proud that you fought so hard to get what you needed !! I am always here for you !! If you have any questions let me know andI can give you a call and answer them for you ..If you can hear me LOL not alot of voice right now, but will do my Best !


Shar

While i am happy that you are at last getting the treatment that you so desperately need,i am also sad that like Robin,your diagnosis is worse than it needed to be.If Robins dentist had picked up his primary 6 months earlier firstly it would have made the surgery less radical,and secondly it would have increased his long term survival chances.This made me furious and is the reason why i have been getting involved in the campaign for early detection as i have never come acroos a disease that advances so rapidly.It is unreal the time you have waited to get to the starting line.
Still the one thing we found was that once we were on the starting blocks,the race advanced very swiftly.So make sure you push for the earliest dates for all your teatment,its your turn to be front of the queue.Good luck Petey and try to keep that sparky spirit live and kicking

love liz in the uk

Petey,

I went through almost exactly what you are going through 4+ years ago. They removed 1/3 of my tongue, no graft. Modified radical neck disection to get lymph nodes and salivary glands, etc. I had one lymph node show up positive on the PET scan which did not show up on the CT scan, so the PET scan is important.

It can be done and I am living proof.

Fight hard and keep us posted.

Jim

Petey....go for IT!!!! I was staged at IV, had 1/2 of my tongue removed and two lymph nodes positive for c....get yourself in there, asap....I applaud you for going on TV, my friend, Gerry saw you!!!!! Good Job, Petey!!!!!Carol

Well Pete, you got in there. Reminds me of the squeeky wheel getting the grease. I hope and pray that it will all work out to your favor. It will be a tough road but with the support you have you should make ok. We'll all be here for you and it is not like we are hard to get ahold of. Good luck and God bless.

I'm very happy that you are going to be treated soon. I know the road has been tough and will get tougher physically now, but what a job you've done being your own advocate and helping others. The folks above have answered your questions. I'm so glad you didn't give up!! Through your tenacity you have become an inspiration.

Tim

Petey,

Your prior actions and words tell me that you are a determined person. You know by now that your Tx won't be a piece of cake but you also know that there have been many before you that have been there and done it. You also know that we will be here every step of the way.

So lets get this plan started.

Petey,

So Glad you finally got some results and are going into treatment. You really have gone through hell already. I am glad to know you did get the pain medicine you needed.