Hello Ambra:

No pet scans yet, I haven't even talked to oncology yet, I suppose ENT is allowing me to heal from surgery some before starting that as I'm only 2+ weeks post surgery.

I have a Thursday ENT follow up, and thanks to OCF have about a thousand questions on my list. They may grow to hate OCF for creating patient advocate nightmares.

My passion is west coast swing, but my dance club does mostly east coast. I like ballroom, country western and latin too. I've competed a little but not much. Maybe one day we can dance. Since I've taught some, you can lead if you want.

Get well Ambra.

Had a good visit with the ENT today. He was pleased with my progress, good healing, no neck swelling (lymph nodes), appetite and diet back to normal, little to no pain. So he released me to oncology.

Tumor is staged as T2N0M0; about as good as I could hope for. Only bad news was after getting a printed copy of all my medical records I find the chest CT showed a 4cm aortic aneurism. That scared me, but ENT said to continue exercising normally and to discuss with PCP if still bothered (I am and I will).

The VA uses a tumor board approach. ENT said my case was presented on Monday to ENT, medical oncology, radiation oncology and surgery; all agreed radiation (but not chemo) is appropriate next step, that treatment to be six weeks of 5 days per week.

Then the really good news came when I returned home to an answering machine message asking if I wanted to do the rads locally instead of driving to Little Rock (1hr drive) daily. Of course was my answer.

So next week I should have my initial consult with radiation and then get started with treatment.

As I live about 8 minutes away from the treatment center I may not need any drivers.

Keeping fingers crossed.
Tony

Hello Tony,
Those are pretty good news! You RAD treatment sounds exactly the same as mine, and we might be starting around the same time too.

Having it done locally is great news as well. Mine will be done an hour drive away, and since I do not drive I will have to reply on my friends which is a complicated. So you are lucky that you do not have to deal with it.

I would ask your doctor the next time you see him/her about areas affected with radiation and if you might need a PEG tube. I don't know if they already discussed this with you, but radiation has really bad influence on teeth so you should visit your dentist now and deal with anything problematic before the treatment start. You should also get fluoride trays made.

And yes, we can maybe dance together one day. I can lead a little, though nothing fancy. I follow much better, I promise.

Good luck!

Ambra:
After release from ENT I went to radiation oncology to ask just those questions. They said that they didn't yet have my med file, so they wouldn't talk to me about anything. Just go home, sit tight, wait for us to call, then we'll talk about all those things.

I was just trying to get ahead of the curve a little in case dental work took longer than planned. I do have some amalgam fillings that may need replacing, unless of course they make me some shields to solve that problem. But the fluoride trays, that's likely something I will get regardless of what they say.

I think I want our first dance to be a waltz, and only us on the dance floor, just like in competition, all eyes on one couple. We can boogie with swing later. "Shall We Dance" is one of my favorite movies. Now if you'd rather do that "Buenos Aires, Argentina" whatever dance that is called, I need some practice first.

Have a great weekend Ambra
Tony

I think IMRT may cancel out the back scatter with opposite beams, something like that, but ask the RO. Good luck.

When I had my IMRT they told me that the "splashing" would be minimal, luckily I passed the dental with flying colors (even still have wisdom teeth). Make sure those fluoride trays don't collet dust. My Dental oncologist told me not to worry if in the middle of treatment it gets too hard to use them. That they were really going to be of best use after treatment.(for the rest of your life).
Tony best of luck with the radiation. So a closer Rad center that's great Tony! So one more fun thing before your first zaps. The incredibly form fitting mesh type mask for comfort. NOT. I hated that thing but got ust to it just in time to finish my last week of treatment. Oh that reminds me of something. If you lose weight during treatment like I did. And if that mask starts to feel a bit loose. you must speak up! They will probably talk to you about this, but my Radiation tecs. did not. I had to tell them. And they made some minor adjustments. Just a heads up. You do not want any wiggle room.As the beams may not hit their exact mark if you should move the slightest bit while being zapped!

Shawn.

Thanks Ambra and Shawn

I've jotted all the suggestions down in my notebook that goes with me to every doctor visit.

Both of you, and all of you at OCF, have a great weekend.

Now, where is that tailgate party.

Tony

Had my initial consult with radiation oncologist today. He showed up with a file 2" thick on me. He had already read surgery and pathology reports and viewed my neck CT. He also drew some different conclusions from what I'd read and thought I'd been told by surgeon and ENT docs.

First off, they did a tonsilectomy, but they didn't go all the way to clear margins. That would have been an 11 hour surgery (I was under an hour at most). so they didn't get all the cancer.

He also found one lymph node (same side as SCC tonsil) that was enlarged to 1cm+ in smallest axis. So he restaged me as T2N1.

And finally, he said that the mouth dryness (ie loss of salivary function) from radiation would in all likelihood be permanent despite the fact that they do use the IMRT approach.

I'm pretty sure I was told a whole different set of things by surgeon and ENT staff (ie we feel we got all the cancer in surgery, no lymph node involvement). Part of me asks was I misled, or did I mis-understand what was said.

Regardless, radiation treatment is still in my future, 33 treatments (not 30 as originally said). My simulation occurs this morning where I'll get my mask built.

For you experienced cancer fighters, I'm interested in your take on all this.

Tony

WOW! That was an eye-opener!!!

I cant believe one doc says you had one lymph node involved and the other says there were none. Thats just not right!!! From what you said, it sounds like you are not being treated at a CCC. At a CCC you would have a team of doctors who all work together and meet to discuss each individual case so everyone is on the same page. At this point, your treatment team is already in place so switching wouldnt be an easy option.

I suggest you get copies of all your tests and detailed appointment notes from every single office visit from every doc. I would then sit down with the whole mess and try to review it to better fully understand where you are at. If that happened to me, I would have begun asking a million questions right there and gotten to the bottom of my health status. You have to speak up and be your own advocate. Remember those doctors work for you. Having you medical records makes things so much easier if you ever want to switch doctors.

Good luck with the mask today!

I seriously doubt that you will loose ALL salivary functions from the rad Tx. You will, like the vast majority of us, loose some but IMO not all. I lost most of my saliva shortly after rad but I estimate that I regained appx 90% of my saliva but it did take all of 2 years for that to occur.

No mention of chemo? With a positive or at least a thought to be positive node I'm surprised that chemo wasn't suggested concurrent with the rad.