I’m a 57 year old male who first noted DD symptoms in late 2012; originally it was just one nodule in the palm below my ring finger, right hand. I immediately knew what it was, as my oldest brother has it and developed a severe contracture around age 62.

I went to a major teaching hospital about 8 weeks ago; the hand specialist/surgeon noted aggressive DD in my right hand, advised me to wait until curvature develops, went over options we might consider at that time. I am so glad I did more research on my own and found out I was still a good candidate for RT. I did ask the original doctor about RT after my appointment with him; he indicated it is "relatively new," but did suggest I research it further, both for “risks and benefits.”

I just completed the first 5 RT treatments this week in my right hand, working with a radiologist; I will go for the rest in July. I have been rather amazed at the rapid spread in my right hand since early this year, now several nodules under 3 fingers, and a palpable ¾ inch cord in the corner of the palm toward the thumb. I also appear to be developing symptoms in my left hand, though the RT at this point was right hand only.

Interestingly, in between the time they made a custom radiation mask for my hand and when the RT started, I noted yet another (I think) nodule in that hand, this one right at the base of the thumb, just where it meets the palm. Unfortunately, this area was excluded from the mask they made for my treatments. I asked my radiologist about it, and will do so again when I meet with him before “round two” of RT on that hand. In general, the mask he made covered almost my entire palm area, to address aggressive spread. He indicated some possible concerns about including joints in RT, so maybe he would not have included the thumb base nodule in any case. Has anyone had experience with RT in a finger or thumb joint? And/or experiences with DD occurrences after RT in an area of the hand that was not originally treated? I’m wondering if they might alter the mask for the next 5 sessions to include that area?

Regarding my left hand, I really only noted early symptoms there about 2 weeks ago, but I think it is happening. Perhaps by the time I start the next sessions for the right hand, we may be ready to start on that hand as well? I’m curious as to when you know the right time to commence with RT. Just looking at how it has spread to other areas of my right hand, it is probably good that I waited 4 or 5 months before starting the RT on that hand, so that a broader area was treated. I’m curious (regarding my as-yet untreated left hand) to hear more about how one knows at what point to begin RT, or how long to wait to determine progression.

Both physicians I have consulted with were excellent, but I am grateful to this (and other) web resources for expanding my own knowledge of RT options. My radiologist is upfront about the fact he is not a specialist in this disease in all its complications per se, though he clearly has treated many other patients for it and I am pleased to be working with him. I gather that it is rather unusual to encounter a hand surgeon who also coordinates RT for DD. Anyway, this site is a godsend! Would love to hear any input, feedback, comments, suggestions, or whatever comes to mind . . . . Thanks!

Edited 04/07/13 04:24

callie:

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Without a doubt I would have them expand the area for the second round. I finished my RT about three months ago. My whole palm and up to the top joint in all fingers. If the nodule is active the RT should help in most cases.

callie:

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My Dr. said that the RT was such a low dose that it could be repeated the next year.

tgm, you asked:

He indicated some possible concerns about including joints in RT, so maybe he would not have included the thumb base nodule in any case. Has anyone had experience with RT in a finger or thumb joint?

In my RT (which will finish tomorrow), three MCP joints (where the fingers meet the palm) are included in the field of the electron-beam, and three PIP joints (the next joint farther from the palm) are barely included in the edge of the field. The field looks similar to those shown in Prof. Seegenschmiedt's papers -- that's partly because I showed Seegenschmiedt's papers to my doctor, who had not previously treated DD.

Could it be that your doctor was talking about bones in general rather than joints?

Exposure to bones is a big consideration for my radiation oncologist. He designed the plan to minimize dosage to the bones. I think that's because there's no benefit from irradiating them, and you don't want to augment your chances of bone cancer. Using the methods he usually uses for cancer patients, he used CT and MRI images to develop a plan for my hand that provides about 2 grays dosage to the finger bones, as compared to 3 grays for the tissue under the skin. You'd like zero grays to the bones, but you can't do that with electron beams. X-rays are no better in that regard, and in fact I think they are a bit worse because a portion of the x-rays penetrate through your entire hand, giving you dosage even on the back side of your hand where you don't want it at all.

The papers you're looking for can mostly be found on this website. Look at Disease and Treatment among the row of blue tabs above, then go to a "Literature" tab.

Here's one book chapter from Prof. S:
http://link.springer.com/content/pdf/10....-642-22697-7_44

I don't suggest that my treatment plan (which I finished today!) is a model to follow, but here's how it happened for me. (It's a bit ad-hoc since it was new to everyone involved, physicians and patient alike, and it was guided by the patient more than you might expect because I read this website and the scientific papers describing the clinical trials.) I first saw the radiation oncologist at a major teaching hospital, and I brought with me a couple of papers with photos and data tables for clinical trial outcomes. The oncologist glanced briefly at them and we talked about them. He asked if I wanted to see a hand surgeon before having treatment, and I said yes. So the oncologist made me an appointment with a hand surgeon at the same hospital. I showed the hand surgeon the same papers with the same photos, and asked him to do palpation on my hand and mark my hand the way that Dr. S marks them. This palpation and marking took about 2 minutes maximum, and that ended up mostly being what determined the radiation field for my treatment. The only subtlety that was discussed was whether to include the webbing between my thumb and index finger in the plan because I have a small cord there that the surgeon believes will not cause a problem for 90% of patients. Otherwise he just drew a polygon that looks more or less like that in the photo of a paper by Prof. S, and it included all my nodules and most of the cords. (The hand surgeon was very busy with complex cases that day, and he didn't really consider me to be his patient, so he didn't give me very much attention -- this is a bit of a shortcoming of this do-it-yourself health-care organizing project that I undertook -- but I think he gave me just enough attention to help establish what would become the radiation field). I then went to imaging, where they gave me all the attention that I could imagine. First I had a CT scan (and I'm not sure if the CT scan was used for anything, I should ask when I go to my followup appointment in six weeks). Then, to prep for an MRI image, they taped a wire on my hand to coincide exactly with the ink marking that the hand surgeon had drawn. They call this a "wire mold" and this appeared on the MRI image. After the MRI imaging, the radiation oncologist along with some other staff member(s) prepared the plan. I believe that for the most part, they used the wire mold as it appeared in the MRI image to define the perimeter of the radiation field -- so in this way, the two-minutes of palpation and marking by the hand surgeon, while looking at the paper by Prof. S, defined the radiation field, or so I believe. They planned how much bolus thickness to use in order to get the 3 Gy dosage in the desired flesh while diminishing the dosage to the bones. (This bolus planning involves a fancy graphical computer presentation that uses the MRI image as its input -- I think this is how 'image-guided radiation therapy' is planned and it's what they do for the cancer patients who represent pretty much all the other patients seen at the clinic, although at a specialized Dupuytren's clinic like that of Prof. S they probably don't do the imaging part.).

Edited 04/09/13 22:07