From Larry ----

Dr. Weiss is from Germany and she knows the German treatment concept!
It is important to document where progression occurs after radiotherapy -
often its on the edge or even outside the irradiated areas, because RT is
often tailored too tight around VISIBLE NODULES and not addressed to the
total area of PALPABLE DISEASE (which may not be visible) ...

I know this from my own treatment, when I was surprised how large my
RT portals were chosen by Prof. Seegenschmiedt, however he explained
me the "iceberg" concept where 10 - 20% of the disease is overt to yourself
but with careful palpatory examination a much larger area is detected.

So I would opt for RE-TREATMENT with RADIOTHERAPY if fields were too
tight and new nodules are discovered outside, but DO NOT RETREAT the
former areas ! Larry

---
OK. Help me out on RT protocol. Unfortunately my DD is very aggressive. I may be a case where RT just doesn't control the disease. I have a lot of nodules. Most are painful and tender.

A little background. My DD first showed up in April 2009. Hit quick and strong which is unusual. Several large nodules flared up immediately and contracture in my right little finger started at once. I had RT a couple of months later. I had it done at UAB in Birmingham, AL. I showed my rad oncologist the German protocol which I got from this board and she read and followed it. She also talked with Dr. T at Scripps. I got two weeks at 2.0 Gy per day, total of 20 Gy. The RT did help on several existing nodules but since then I've had a number of others pop up and I can see and feel cords and tightening in most every finger. It is getting worse quickly.

Sometime soon I think I will opt for another round of RT. Sure, I would prefer to go to Germany and get it done by the best in the world. And yes I could go but I am inclined to get in done locally for convenience and because I'm not sure there would be that much difference.

Am I wrong that only real difference would be in the area to radiate? The equipment is essentially equal. The dosage to administer is fairly basic IF you follow the published German protocol. A MRI and CT can be done here. Seegenschmiedt is the foremost expert on where to radiate but as I understand it, it is based on palpation and location of the nodules.

I'm acutely aware of my hands and I know every bump/pain/cord/tightening, etc. I check them and palpate them a lot. I don't think in my case a Dr. will find a nodule I'm not aware of. I don't have thick stubby fingers so maybe it's easier to locate the problem areas in my case.

So, Larry, newman, anyone else, I would appreciate any input. Yes, my health and hands are extremely important and I don't want second rate care or treatment. If I can't get equivalent treatment here I will go where I have to go to get the best.

I think you're right on. I thought I knew my hands, but the nodules and tightening keeps happening. I think I have an aggressive DD, but believe my hand would be very contracted if I had not had RT. Fortunately (I think), mine does not affect the finger joints so far except from tightening in the palm. Weird!
It is convenient for me to see Dr. Denkler week after next, so I plan a consultation with him. It will be interesting to hear what he has to say. It was 2 years ago that I had NA with him then RT 5 months later.

Is this just to keep check on your hands by printing your hand? And why would your partner do the same? I had both hands completely radiated so is this just for people that just have small areas radiated. CONFUSED!

Hi Cindy , Can I ask why you had the complete hand irradiated. I would suggest that everyone as soon as they locate any nodules to document the location. Digital photo for the feet. The photostat is a 1to1 image and is simple to do. Date and keep for further comparison.

Edited 02/01/11 02:10

It was my doctor that decided to do the whole hand. And when i say the whole hand it was the palm and thumb and all fingers to middle knuckle. T he reason he did this is because there is hidden disease and cords in your hands that you don't know you have. And it also helps to stop anything that might want to start brand new with activation. The doctor pointed out things on my hands that i didn't see myself. This way its not a waste of time and you do it all at once and get it over with and not have to worry about outside the radiated areas starting something. I have some pictures of my hands and having radiation on here. Go to search and put in radiation experience and put cindy850 and it will bring it up. You will see the markings that the doctor put on my hands. I feel having the whole hand done has helped and when i read on hear of so many people having problems outside of radiated areas i know this was a smart move doing it this way. Take care