I’ve had DC in my left hand for about 12 years. It has progressed slowly enough that only now am I considering it beneficial to get NA or Xiaflex (haven’t decided which yet), but it’s too far gone to bother with radiation. However, just a few months ago I noticed two nodules in my right hand and the start of a large nodule in my foot. With NA and Xiaflex making surgery less likely, I’m not as worried about the start of DC in my right hand, but I am very concerned about the ultimate prospect of surgery for Ledderhose in my foot. I decided it was time to pursue radiation therapy (RT).

I asked around and everyone I consulted with, my hand surgeon, doctor friends, and the Mayo Clinic all said not to get RT. None of them knew much about RT for these conditions, and I sensed their advice was based on a bias against any kind of RT. I finally contacted the Radiation Oncology Department at the University of Minnesota Medical Center. I pleaded my case with the intake nurse who said she’d talk to the physicians and get back to me. I received a call a couple days later and was told that they had never done RT for these conditions, but that I could have an appointment with Dr. Kathryn Dusenbery, the Head of the Department.

I met with Dr. Dusenbery, and one of her residents (it’s a teaching hospital). I had brought a lot of information about RT for DC and Ledderhose from this web-site including the list of the locations that currently perform RT. I was fully prepared to plead my case and educate them if necessary, but was I ever in for a surprise. Dr. Dusenbery had come well prepared. She had done research on her own and even had a meeting with other specialists at the University of Minnesota to determine the benefits and risks of RT for my condition. Although she was well versed in DC and Ledderhose, she patiently let me tell her what I knew and let me make my case. She looked over the list of clinics currently doing RT and said she knew a few of the people listed and would call them for more information. She then said she’d do the procedure because the risks were minimal, and according to the papers she had read, there was significant potential benefit. I was very impressed with her.

I went in two weeks ago for the set-up where they figured out the best positions for me, made some molds to hold my hand and foot in place, and marked my hand and foot with a Magic Marker “X” help with alignment during the RT procedure. They also did CAT scans.

Last week I went in once a day for five days to get radiated with X-ray’s and in six weeks I go in for another week. Altogether I’ll be radiated ten times, each time with 3 Grays for a total of 30 Grays. Each procedure last week took no more than 45 seconds and was painless. I had been warned that my skin might get dry and look a little sunburned, but I don’t notice any effect at all. My biggest difficulty was frequently reapplying the “X” on my hand and foot since they wore off so easily. On Friday they asked if I would be willing to get a small tattoo to mark the “X” to make it easier for them during the next round and I agreed.
This has been a very positive experience for me. The office people, nurses, and radiation therapists at the Radiation Oncology Department are outstanding and I’m really impressed with Dr. Dusenbery. She has given me permission to use her name and welcomes any calls for consultations (612-273-6700).

I thought of calling my insurance company for pre-approval, but pre-approvals are not required by my plan and I see no reason why they shouldn’t cover this like any other procedure. I feared that the very act of asking would put them on alert and that whomever I talked with would say “no” as a first response. Dr. Dusenbery said she had seldom had a problem with getting insurance companies to cover procedures she does and she is willing to go to bat for me should it become necessary.
I feel very lucky to be in the Twin Cities were we now have NA, collagenase, and RT treatments available.

- Tom

[Later edit] Whoops! I noticed I put this post into the wrong forum. Maybe the moderator can move the thread?

Edited 01/19/11 03:47

Larry, the Seegenschmiedt study from September 2006 (found elsewhere in this forum) used an 8 week interval, and and another study by Betz N, Ott O J, Adamietz B et al (2010) used a six week interval. Both studies are also cited in the European NICE article on European approval for RT for Dupuytrens: https://www.nice.org.uk/guidance/ipg368

I believe my physician said 6-8 weeks based on other studies she had read as well.

I did see one study on RT for Ledderhose where they used a 8-12 week interval.

I'm not sure it makes too much difference. I had absolutely no redness or dry skin from my week of RT so I'm not too worried about going back at six weeks.

i appreciate your suggestion and it did make me go back and double-check. That's always good.

Tom

Has anyone thought about a general form for documentation of Morbus Dupuytren & Ledderhose

I remember Prof Seegenschmiedt using a very detailed questionaire (even in English) and also
photocopies after sketching all aspects of the disease on my hands (nodules, cords, scars etc.)
I still keep a record of the documents which I believe are important to compare the conditions
prior and post any therapy ---> So what are your experiences with long-term documentation ...?

It shouldn't be just photographs ... ? ... and bills !

Edited 01/18/11 22:27