sheryl smith-rodgers

DUPUYTREN'S DISEASE

Hi. My name is Sheryl, and I have Dupuytren's disease.

You have WHAT?

My reaction exactly.

June 2024

This story begins in early summer. During my annual exam at a local medical clinic, I showed the physician’s assistant a lump in the webbing between my thumb and index finger on my left hand. I’d noticed it for a few weeks and thought maybe it was a bug bite. The PA felt the lump, then pronounced it to be some sort of cyst that would cost $1,000+ to remove surgically.

I promptly forgot about it.

July 2024

While at my annual dermatology visit, I stuck out my hand and showed the doctor my lump. Likewise, she felt it.

“Oh, that’s Dupuytren’s contracture,” she said.

“That’s WHAT?” I replied.

“Dupuytren’s,” she repeated.

“Could you please write that down for me?”

“Sure.” The doctor tore off a piece of paper and scribbled Dupuytren’s contracture in black ink. I stared at the words, then stuck the paper in my purse.

There it remained until I began to notice the lump more and more. Grudgingly, I pulled out the paper and Googled the name. That’s when I began to learn not only how to say and spell Dupuytren, but how I looked to be headed for a challenging health issue at age 65. On Facebook, I joined several Dupuytren groups.

What is Dupuytren’s disease?

According to Johns Hopkins Medicine, “Dupuytren’s contracture (also called Dupuytren’s disease) is an abnormal thickening of the skin in the palm of your hand at the base of your fingers. This thickened area may develop into a hard lump or thick band. Over time, it can cause one or more fingers to curl (contract), or pull sideways or in toward your palm. The ring and little fingers are most commonly affected. In many cases, it affects both hands. Rarely, feet may also be affected.”

According to what I’ve read, the disease is believed to be hereditary. It may also be linked to smoking, alcoholism, diabetes, nutritional deficiencies or medicines used to treat seizures.

I fit none of those profiles.

By the way, the disease is named for Baron Guillaume Dupuytren, a French surgeon who described and developed the first surgical procedures to alleviate what became known as "Dupuytren's contracture."

September 2024

After asking around, I made an appointment with an orthopedic surgeon in Fredericksburg. At his clinic, a technician took three x-rays of my hand in different positions. Later, the doctor stepped into the exam room to look at my hand.

“Yep, you’ve got Dupuytren’s,” he said matter-of-factly.

In a nutshell, he said the only solution – because there is no cure – was to remove the nodules via surgery. He shook his head at other medical alternatives, such as shots or radiation. Too expensive, he said.

“All we can do is monitor your hand,” he said. “Come back in six months, and we’ll take another look.”

I got back on Facebook and started asking questions in my Dupuytren groups. I also cancelled my follow-up with the orthopedic surgeon.

October 2024

One evening, James, my husband, and I took a bike ride in the neighborhood. Fifteen or so minutes later, I noticed my left hand begin to ache. So I lessened my grip on the handlebar and then completely let go. I must have “awakened the monster,” as Dupuytren patients say, because my nodules began to grow and increase. My hand aches and tingles sometimes. It's not pleasant.

Thanks to this odd condition, I've become more aware of others who suffer with it. While at a recent Texas Master Naturalist conference, a nice gentleman and I attended several of the same sessions. I'd noticed that the fingers on one of his hands were drawn up and contracted. Finally, I got up my nerve, leaned over to him, and stuck out my left hand.

"Do you have what I have?" I asked.

He nodded. "Yes, my father had it," he said. Thankfully, the gentleman said he has no associated pain with his Dupuytren's contracture.

In the meantime, I reached out to Debra, a Texan in one of my Facebook groups, and asked if she could recommend a radiation specialist. From what I’d read, low radiation therapy seemed to be my best option for relief. She said yes and reached out to her oncologist. He got right back to her!

On a Saturday morning, October 12, I emailed Dr. Shalin Shah (pronounced “shaw”) with MD Anderson Cancer Center in Sugarland, Texas, and requested an online consultation. By that evening, he emailed me back!

October 31, 2024, consultation

Via Zoom, Dr. Shah met with me and shared a slideshow to help explain this disease. He ultimately recommended that I proceed with low radiation therapy on my left hand. Here are some of Dr. Shah’s thoughts and observations during our visit, which I recorded (with his permission):

  • “We need to figure out how much this is growing (in my hand). And if it is, we can jump in with radiation to prevent it from progressing further. If it’s just hanging out, then we don’t need to jump into radiation. We can continue to watch it. If it does progress, then we need to start radiation. That’s what we’re going to figure out today. Radiation is an option, but we want it to be an option when it starts to grow and progress.”

  • “Once we examine you, we give you a stage, which is dependent on how much contracture you have (in your hand). You’re still pretty flat. You fall into that early stage. That’s important because if we can catch it early, where you’re contracted less than 10 or 11 degrees, we can do radiation to prevent it from progressing more. If it’s progressed past that, then I would have the hand surgeon do a procedure to straighten you out, then do radiation after that. You’re not there yet.”

  • “The hand surgeon was right in the sense that he would not touch you with a procedure right now. But a lot of hand surgeons aren’t familiar with radiation as a preventative option. That’s changing slowly as more radiation oncologists get involved.”

  • “For me personally, I’m a cancer doctor. I treat head and neck cancer, and prostrate cancer. I got involved in Dupuytren’s because I was moderating a radiation oncology discussion group on Facebook, and one of the patients with Dupuytren’s back in 2015 reached out and said, ‘We need more radiation oncologists to educate themselves and advocate for us.’ That’s when I got involved. So far, I’ve treated about 160 or so hands and feet since then.”

  • “I see that this is often mislabeled as a “benign” disease. But when you do that, you ignore the effects that it has on people. On their work, on their day to day. On their pain. On their mental state. It’s anything but benign because you see what our patients go through. That’s why I’ve gotten involved. I want to help.”

  • “The level of success (of radiation) is dependent on how early we catch it. The Germans have been using radiation to treat Dupuytren’s since the 1940s.”

  • [Shares a chart] “So of all people who have nodules and elect not to get treated, about 35 percent will notice growth, meaning more nodules, more progression. But that means 65 percent have not. Those who got radiation, only about 5 percent end up progressing. So our success rate is good, especially if we catch it early.”

  • “I feel comfortable offering radiation to you on your left hand and watching your right hand closely.”

  • “When folks come in for treatment, we’ll map out where the disease is. We’ll take a CAT scan with you on your back. My target area is the tendons on top of the bone. Those I want to hit with a superficial form of radiation called electron that are targeted at the soft tissue in between the bones and the skin. I use your CAT scan to determine how deep we need to go.”

  • “We use a linear accelerator machine to deliver the radiation. We do five days of treatment, then we take a 12-week break. Then we do five more days of treatment. At 11 weeks or so, you come back into clinic, and I examine you again to see if there are any changes. If there are changes, we can make those adjustments, then give you that second course. After that, you can follow up with me or the hand surgeon.”

  • “Most common side effects are redness, irritation and swelling, especially in the nodules, that can last for a little bit. Conservative management: Motrim, ice packs and cold packs. Some people have dry skin or sloughing off of the skin. Sweating or decreased sweating in the hand. The biggest theoretical side effect we worry about is a second cancer in the radiation field. If you look at all the German reports going back to the 1940s, no one’s ever reported a second cancer from this type of radiation. It’s a very low dose.”

  • “The goal of this treatment is not to make this go away but to prevent it from progressing further. About 90 to 95 percent of patients will have prevention of progression. The lucky 15 to 20 percent will actually show some regression, such as softening of nodules. Five to 10 percent will have progression. But the results have been pretty good.

  • “I will do secondary course (of radiation) and even a third. I don’t like to, but I will. But it’s rare.”

    • THANK YOU, DR. SHAH! For more information, Dr. Shah has two videos on his     YouTube channel.

    I am moving forward to seek radiation treatment from a radiation oncologist at the Mays Cancer Center/MD Anderson Cancer Center in San Antonio. I will update this page as I go along.