My Journey – a diary

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." 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 with Dr. Shah

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 CT 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 beam radiation that are targeted at the soft tissue in between the bones and the skin. I use your CT 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.

November 5, 2024 – Appointment with Dr. Ha

Today I met with Dr. Chul Ha, a nationally recognized expert in radiation oncology at the Mays Cancer Center in San Antonio. (Dr. John Yassa also attended my appointment.) Dr. Ha carefully explained the risks of radiation and mentioned that this type of therapy for benign conditions isn't used very much in the States. I told him I was ready to move forward with it. As planned, Dr. Ha will confer with Dr. Shah.

First step: Schedule a CT scan that will be used to map out the area of treatment on my left hand. After that, five days radiation followed by 10 or so weeks off. Dr. Ha will check my hand for any changes, then I'll return for five more days of radiation.

"Have you treated anyone with Dupuytren's before?" I asked.

Dr. Ha shook his head. "No."

"Oh, then I'll be your first," I exclaimed.

I said I'd be happy to talk to any future patients about low radiation therapy for this disease.

November 18, 2024 – CT scans

Left to right: Dr. John Yassa, Dr. Chul Ha, Nickie and Louis

This morning was CT scan day. This was a first for me so I had no expectations.

We arrived at Mays Cancer Center in San Antonio by 8:45 a.m. Right before 9, Louis – one of two CT scan technicians – escorted me to the imaging room. I was happy when I saw Dr. John Yassa appear. Right away, Louis had me lay down on a table. It took a little bit of time before I found just the right position.

"Oh, this is how I sleep," I noted after finally getting adjusted on my left side. A flat blue block propped my head up. Above me, my left hand stretched out awkwardly, palm up on the table. By then, Nickie – the other CT scan tech – stepped into the room. So did Dr. Chul Ha. That's the moment my eyes welled up, and emotion got the better of me.

All these people are here to take care of me. I am so blessed. A tear leaked from my right eye down to the bridge of my nose. James, my husband, leaned over me. "You ok?"

"I'm just so grateful," I said. A few more tears escaped.

 

Around me, Dr. Ha worked to position my hand just right. It took everything I had to get my thumb to lay flat. The rest of my fingers, too. It was not comfortable.

"Oh, I've seen this before," Nickie commented. "We had at least two patients where I was before, and they had good success with radiation." That gave me more encouragement.

After some time working with my hand, Dr. Ha seemed satisfied. Everyone left the room. A soft motor rumbled, then the table slowly moved forward. The entire time, I focused my blurry vision (I'm near-sighted) on a small green neon light that glowed on a black box attached to the wall. A few seconds, then the table moved back. It may have moved forward again. Then Louis returned to the room. He removed a gummy clear sheet called a bolus from my hand.

"Now I'm going to give you some tattoos," he said.

My first thoughts: Do I get to pick? Will they wash off?….

"Really?" I asked, a bit skeptical. "Will they be permanent?”

"Yep. They'll look like little freckles. Like this one." Louis held out one of his hands and pointed to a spot on his palm. The black dot was barely visible.

"Oh, my first tattoos!"

Louis laughed. "See? Something good came out of today."

Then, using a tiny needle, he pricked my hand in three places. A little blood seeped from each.

"My daughter will be so impressed," I quipped.

Moving forward, my CT scans from today will be used to map out the radiation areas on my hand. My first round of treatments has been scheduled for December 9-13. 

 

December 9, 2024 – Radiation

There I go, off to radiation yesterday morning in Vault 2 at the Mays Cancer Center in San Antonio. The rest of this week, I go for four more afternoons of treatments. My first treatment was a simple matter of climbing onto a table and laying still. (I later learned that vaults have concrete walls three to four feet thick to protect medical staff from radiation.)

 

"Oh, I was expecting a mattress," I joked when my bottom landed on a hard surface. 

 

"Let me get you a pad," said Jeff, one of my two radiation therapists for the morning. 

 

"That's okay," I replied, shrugging. On second thought, though. "Well, sure, okay," I agreed.

 

Jeff unfolded a vinyl pad on the table and covered it with a sheet. Then he gave me two foam triangular pillows. One went under my head and the other between my legs. Later, I was very thankful for the extra padding!

 

 

 

Dr. Chul Ha, accompanied by Dr. John Yassa, came into the room briefly with his laptop computer. He conferred with Jeff and Jasmine, the other radiation therapist, as they worked to arrange my hand just right. At one point, they marked my left hand with a purple marker. On the table, I stared sideways at a beautiful framed digital photograph of the sea while the radiation team exchanged numbers back and forth. Overhead piped-in singers crooned lyrics from the '80s.  

"Once you do radiation, there's no do overs," noted Jeff, who's been treating patients for 22 years. He's a cancer survivor himself. Like with Dr. Ha, I was Jeff's first Dupuytren's patient, though he's treated many hands with other diseases, namely cancer.

 

The doctors left while Jeff kept arranging my hand and the equipment. Finally, he was satisfied. Then he and Jasmine left the room. It was just me and George Benson.

 

"Cause there's music in the air and lots of lovin' everywhere. So gimme the night, gimme the night..."

 

I lay super still. Then a soft motor buzzed, maybe for a couple of minutes. A click sounded, then my first treatment was done! Afterward, James and I met briefly with Dr. Ha in an exam room. He told me to call him with any questions or concerns. But, hopefully, I'll only have maybe some redness on my hand and a little fatigue. We'll see!

 

December 18, 2024 – Week #1

For the next 10 weeks, I'm going to write a weekly update during this time of "rest" between radiation treatments. Last Friday, I had the last of five consecutive treatments on my left hand at Mays Cancer Center. I've already been asked by a couple of Dupuytren friends how I'm doing (both started their radiation this week).

No redness as yet in my hand. I'm feeling about the same, no fatigue. However, my nodules seem a little harder and more sensitive. If I accidentally bump one, YIKES! My hand aches sometimes but not too bad at all. 

 

December 27, 2024 – Week #2

My left hand is about the same this week. Some stinging, aching, tightness around the nodules.

 

Ugh, today I accidentally hit what must be a small nodule in the palm of my right hand. OUCH! Not good. It's time for me to buy some protective gloves and wear them. 

January 8, 2025 – Week #4

I can't put my left hand around a glass or mug without discomfort. The nodules are about the same – sometimes tender. Often tight feeling or like bruised. On a pain level, it's 1 or 2 – Thank the Lord for that!

 

January 29, 2025 – Week #7

 
My left hand has been uncomfortable and tight. The nodules seem harder. A week or so ago, I messaged Dr. Shah.

 

"I have a question about the condition of my left hand since the first treatment in December," I wrote. "My nodules seem harder and more sensitive, a bit painful at times. I think I have a few new ones too. Is this 'normal' at this stage? I know every case is different."

Dr. Shah wrote back: "Yes, this is totally normal and the result of mild swelling after the first course. Dr. Ha will likely examine you prior to your second course to confirm. For now, conservative management with ibuprofen, cold packs can help with the swelling. If you need something stronger, Dr. Ha can prescribe a medrol dose pack."

 

I had also messaged Dr. Ha, who asked me to come in so he could assess my hand. Yesterday, James and I drove to the Mays Cancer Center to see him. He looked at my hand and compared the areas to a map photo of the radiated areas on my hand. He assured me that my nodules are all within the radiation target area. 

 

Then I showed Dr. Ha my right hand. "I think it's starting in this hand, too, so you'll probably be seeing more of me."

 

He asked who was "quarterbacking" my case. In other words, who was my Dup doctor?

 

"That's the problem," I said. "I don't have anyone. The orthopedic surgeon who diagnosed me only recommended surgery and didn't mention radiation. I've looked for a hand doctor who would work with radiation, but I can't find anyone."

 

Dr. Ha said he'd check within the (UT Health San Antonio) system and get back to me. This morning, he called me and said that someone with the Department of Physical Medicine and Rehabilitation will contact me to set up a consultation. Dr. Ha said he wants my case followed "longitudinally." I believe that is really great news!

February 11, 2025 – Week #9

 

This morning, I met with Dr. Brian Fricke with the Department of Radiation Medicine at the Mays Cancer Center in San Antonio. Once again, I feel like I've landed in really good hands. I officially have my quarterback now! Plus, he's young so I will definitely outlast him. LOL!

 

Dr. Fricke assured me that he's worked with Dupuytren's patients in the past and seemed very familiar with my condition. Surgery is a last resort for this disease, he said. Right now, our course of action will be three or four sessions of hand therapy (before or after my next and last radiation treatments, which start February 24). I will see Dr. Fricke again May 6. He mentioned that if two nodules in my left hand continue to grow, we might try steroid shots to slow them.