I just got back from seeing Dr. Pauling Chang at the Palo Alto Medical Foundation (PAMF) in Palo Alto, CA. Today was my 3-month check-up after my Radiation Therapy Treatment last December. My result: my Dupuytren's disease is almost completely gone! Both Dr. Chang and I are very happy with the results!

Since I haven't posted here in the past, here's my story, told as briefly as possible:
- On Oct. 12, 2010, during an annual dermatology exam, I asked my dermatologist about a small lump in my palm, which I thought might be a wart. She recognized it immediately as early stage Dupuytren's Disease and referred me to a Hand/Orthopedic Surgeon.
- On October 21, I visited Orthopedic Surgeon, Dr. Andrew Gutow, at PAMF and he confirmed the diagnosis that I had early-stage Dupuytren's Disease. I asked him what I should do, and he told me there really was nothing to do but keep an eye on it, and if the symptoms progressed to where I had a contracture in my hand, to come see him again for possible treatment. At that time I asked Dr. Gutow about Radiation Therapy since I had read about it on this website, and he told me that he didn't know of anyone who was doing it, and he wasn't even sure it was legal in the United States as a treatment for Dupuytren's Disease.
- I was thoroughly discouraged by Dr. Gutow's recommendation to "wait and see," as the last thing I wanted was to have hand surgery if I could possibly avoid it. And since I had read on this website that Dr. Chang was treating early-stage Dupuytren's patients with Radiation Therapy AT THE SAME CLINIC where Dr. Gutow practices, I made an appointment to see him.
- On November 5, 2010, I met with Dr. Pauling Chang, a Radiation Oncologist at PAMF. He examined my hand and again confirmed I had early-stage Dupuytren's. He said that because I was in the early stages of the disease and had not yet developed a contracture, Radiation Therapy was a good option for me and he'd be willing to treat it. I was encouraged, but Dr. Chang also disclosed the dangers of Radiation Therapy for patients who are not being treated for cancer, as Radiation Therapy can actually cause cancer later on. However, the amount of radiation applied in treatment for Dupuytren's is relatively low. Still, he said there was a 1% chance I could develop skin cancer or bone cancer in 10-15 years as a result of the treatment. And being that I'm 46, that was something to think about.
- After considering the side effects of Radiation Treatment (the 1% chance of developing skin or bone cancer) and the almost certain need for surgery on my hand if I didn't, I elected to move forward with the Radiation Therapy.
- On November 29, I visited Dr. Chang to have a lead mold made that would contain the radiation applied to my hand to only the area needed. Later that afternoon, I returned for the first of five radiation applications performed over five days. Each radiation treatment was painless and only took 1-2 minutes each.
- After the fifth radiation treatment on December 3, Dr. Chang scheduled an appointment with me three months later to observe the effects.
- That 90-day review was today, and the two small nodes and single cord that was developing are almost completely gone! I can still see the remnant of the larger of the two nodes, but it really is almost completely gone, and I have no hand tightness or other symptoms of Dupuytren's Disease.

In summary, I am so pleased with my decision to seek Radiation Therapy with Dr. Chang. He made this an easy and painless process. And assuming the 1% possibility of developing cancer 10-15 years from now doesn't come to fruition, I'll continue to be a happy man!

So kudos to Dr. Ruth Rothman, the dermatologist who recognized the disease in my dermatology exam! And kudos to Dr. Chang for his great work!

Dr. Gutow, on the other hand, really needs to open his eyes to alternatives to a wait-and-see approach, as waiting will result in a missed opportunity to treat the disease before surgery is needed.

Good luck to all, and be persistent if you think Radiation Therapy might be right for you!

Lee

Edited 03/03/11 03:25

Lee, good news!

Here is the general consensus on cancer and RT. This is what I was told by my radiation doc and this is a paste from Wikipedia.

Radiation is a potential cause of cancer, and secondary malignancies are seen in a very small minority of patients - usually less than 1/1000 (far less than 1%). It usually occurs 20 - 30 years following treatment, although some haematological malignancies may develop within 5 - 10 years. In the vast majority of cases, this risk is greatly outweighed by the reduction in risk conferred by treating the primary cancer. The cancer occurs within the treated area of the patient (hand for DD).

Hi LubaM,

To answer your questions, please see below:

1. What type of insurance do you have?
I have Cigna PPO, which has been great. Since it is a PPO, I can select the doctors that I want to see without a referral. That was key when I decided I wanted to see Dr. Chang. I just made an appointment and saw him!

2. Was there any problem with the insurance covering your RT treatment?
No problems at all. My PPO stipulates that I have to pay 10% of the billed amount, so I understood that going in, but beyond that, Cigna paid everything and gave me no hassle at all regarding the RT treatment.

3. What is the protocol that Dr. Chang uses? how many Gys in each treatment? does he usually only do one series of
five treatments?
Dr. Chang prescribed 5 days of consecutive RT treatment initally. I don't know the dosage as I never asked. Following the 5 days of treatment, we let 90 days elapse before evaluating the result. As I stated yesterday in my original post, the 5 days of treatment have reduced my nodes and cord to almost nothing, so I have no further treatment planned. Dr. Chang did originally say that I might need to undergo a second phase of 5 days of treatment, but based on the results so far, we've agreed that is not needed.

I hope this helps!

Also, I forgot yesterday to give kudos to the Dupuytren's Society and to this website. This site has been most important, as without it, I likely would not have even known RT was a treatment or found Dr. Chang. Thanks again to all who make this forum possible!

Lee