When I had RT mine DD was certainly active. Everyone of us has had a different experience with DD. Mine was painful, I had tingling, cramping, itchng, etc.. I was very aware my DD was active. As everyone has stated, RT only works when DD is active. If your DD was active then RT would be considered an appropriate treatment. If you are in the phase where your DD is not active then RT might not even work. I documented changes in my hand and I took photo's. From this I could document how rapidly my hand changed. This documentation confirmed mine was very active. I progressed from a nodule to a cord in less that 6 months. I had RT and have been in remission for over 3 years. Please let us know what the specialist and your brother say. Good luck with the appointment.
Hi All, sorry for the month delay in posting ..my appointment with Dr. Nelson in Waterbury CT was postponed twice due to Sandy.
I liked him very much,& even though he has only proscribed RT to 4 patients, he studied NA with Dr Eaton, as well as understands the German protocol and has been in touch with Dr. Seegenschnmedt as well, so he not only "gets it", but also spoke intelligently, and demonstrated a high level of interest in various treatments.
I am indeed at an 'active' stage of DD, with no contracture, two nodules, two cords, and was deemed suitable for RT.
I had a follow up last week with his radiation oncologist, a Dr. Ravenese just down the st. I also like him, he is very diligent, interested, and knowledgeable...but keep in mind he has only radiated 4 patients. His protocol is the same as the German one...30 Gy's total, 5 straight days of 3 Gy's, then back again for 2nd round of same 6 weeks later.
I am quite comfortable with my new formed plan. I ran the protocol by my Dartmouth educated Radiologist cousin, and he said it sounds like a smart plan, and that any danger of hand cancer in the future is extremely low, and only theoretical.
I appreciate and respect those of you who posted comments to my original posting, and will keep you apprised of my process.
I learned much from this site, and hope my experiences and learning will be of use to others.
It is really pleasing to see patients and Drs chasing up established protocols overseas.......this is where the improvements in treatments will proliferate throughout the world......and hopefully we will be in a much better place treating this condition in the future....
The one thing that I feel needs to be mentioned about RT is that there is plenty of talk about dosage and timeline.....this is of course very important......however.......I believe the most important component that often seems overlooked is the area to be treated......this is why the oncologist either needs to know how to palpate the patient correctly......or can rely on a expert in hands or feet to accurately do this for them......my fear is this.....
Patients are having RT where ALL the disease is nt being treated.......they then go on to develop new nodes outside the treated area......this will ultimately give RT a bad name for treating DC......this will be a real shame as it seems RT is very effective at stopping proggresion if delivered at the right time.....with the right protocol.....and the correct margins....
This is where I am seeing a little controversy. My Dr. said that there would be no problem having radiation of the whole palm a year or two later. For that reason she radiates the entire palm area up to the DIP joint (closest to tip of finger). This insures getting all areas that could be very new and not noticeable. This does not seem to coincide with the writings of Prof Seegenschmiedt and others.
I certainly get the point about the margins...seems a bit of a double edged sword, as on one hand (haha) you might want to leave a margin and radiate (healthy?) nearby tissue, but on the other hand, if you develop problems outside the RT area later, you can always go back and RT that area.
Callie speaks to this with her Dr.'s comment about "going back in a year later" which she rightfully claims does not coincide with the writings of Dr. Seegenschmiedt...who would like to keep the total dose around 30gy, so there may be a case for only doing what is affected.
For me, the only area they will be radiating is a 3x2" area of two nodules and minor cording below my ring and middle finger...my fingers are completely normal so no radiation needed. (see attached picture of markings)
I am not medically trained......all I know about this condition is what I have searched for on the web.....listening to other patients and......my valuable 3 hours with Prof S.
My feeling for what it is worth is that if the photo you ve posted was my hand and I had decided on on RT.......I would like a larger margin radiated.......my understanding is that prof S. Gets ALL the diseased area.....plus 2 cm.....how do we know that your margins show ALL of the diseased area??.....I go back to my point regarding palpating......Prof S. Found disease in my hands and feet I knew nothing about.....
If I had a choice between radiating a larger margin or smaller margin......I would go for the larger margin including healthy tissue.....Because......
You have a better chance of getting all the disease once and for all....and...
More RT makes the healing process more difficult if surgery is later required....
I have heard of practitioners using MRI to establish the area to be radiated......maybe this is also an option for you...
Hi eleven40; I'm not sure that I should be sticking my nose in here but, if it were me, I would do nothing at this stage with your hand. I have no medical training but I have had DD for 45 years and, from your photograph, it looks to me like you have very early stage DD.
The disease might halt its growth soon in that area and then remain dormant for years. Alternatively it might pop up on your other hand or in an entirely new place on that hand. RT is not free from risk and I can't see any reason to assume that the area close to the existing nodules is where the disease will grow next.
Of course it must be your decision so just a word of caution from me.
You said, "More RT makes the healing process more difficult if surgery is later required....".
That seems to be another controversy. My Dr. said that there would be no problems with surgery following RT. That is another reason she suggested the entire palm area.
You said, "More RT makes the healing process more difficult if surgery is later required....".
That seems to be another controversy. My Dr. said that there would be no problems with surgery following RT. That is another reason she suggested the entire palm area.
Hi Callie.
This is something that has come up many times with hand surgeons......operating on previously radiated areas can make the healing process more difficult......Thus many do not recommend RT......My understanding is that this point of view is starting to soften as 30gy of radiation is not excessive and healing if surgery is later required has not been a major problem.....
However....if we keep on radiating over the same area we increase probability that healing becomes an issue if surgery is required......hence my point regarding the best process for RT........
Proper palpation..
Radiate all of the disease...plus a margin.
Do it once on the established German protocol....
......and hopefully you can be in the high percentage of patients that can walk away and forget about this disease.....
I asked prof S. How many of his patients required more RT after initial treatment......From memory he said very few, 3 or 4 with particularly aggressive cases. A pretty good outcome considering the huge volume of patients he s seen.
My guess Callie is that if you follow your oncologists advice regarding margins, the dosage follows established German protocol and the timing is right for RT......the progression will stop and that this will be your first and last treatment for DC.......My concern and reason to contribute to this thread was to raise the issue of radiating small areas and needing unnecessary further treatment..
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