Here, patients who received STAR (and who are not part of the PAB) share their experiences in their own words. These stories show what treatment means in daily life and give hope and support to others. We invite you to explore these voices and feel connected with people on a similar journey.

Irregular heartbeat
Heart rhythm disorder means the heartbeat is irregular, it may be too fast, too slow, or skip beats. People with this condition often feel tired or short of breath. Sometimes it van even cause fainting because of a blood pressure drop. If left left untreated, the problem can worsen and may lead to more serious complications, such as heart failure or, in severe cases, death.

Medication and ablation
“Together with Mr. Donker, we chose radiotherapy because the usual treatments had not worked,” says cardiac electrophysiologist Rutger Hassink. “Medication is the first treatment we try for heart rhythm disorders. Sometimes it doesn’t help, for example when the body no longer responds to the medication. It can also happen that the side effects are too severe. In those cases, we look at the second option: ablation.”

Too far to reach
Rutger explains: “Ablation is a procedure where we insert thin tubes, called catheters, through the groin and guide them to the heart. With an electrode, we burn away the piece of heart tissue that causes the hearth rhythm problems. This active spot then becomes scar tissue, so it can no longer cause rhythm problems anymore. But sometimes we can’t reach the right piece of heart tissue with a catheter, for example because the problem originates from a spot deep inside the heart muscle. In some places, that muscle is at least a centimeter thick; if the source lies deep inside, it’s too far to burn away.”

The right time
This was exactly the case with Gijs Donker, as became clear during the ablation Rutger and colleagues performed in the autumn of 2021. Shortly after Gijs woke up from anesthesia, the cardiac electrophysiologist told him about a treatment UMC Utrecht planned to offer in the future: radiotherapy for heart rhythm disorders. 

Radiation oncologist Joost Verhoeff had earlier started research into this approach. As project leader, Joost had applied for and received a Horizon 2020 grant for the so-called stopstorm.eu project. By last year, UMC Utrecht had learned so much that they were ready to treat their first patient.

Better quality of life
Gijs says: “I immediately told Dr. Hassink I wanted to be considered for this treatment. Shortly afterwards, I got a call at home: was I still interested? I was invited to meetings with cardiologists Meine and Hassink, and radiation oncologists Verhoeff and Van de Pol. At the end I said: I’ll do it, but only if my wife and two sons agree. They were on board too. For me, the choice was quite simple: the treatment was my only chance to improve my quality of life.”

As safe as possible
The procedure took place on December 9 under the leadership of radiation oncologist Sandrine van de Pol. She says: “The radiation itself only took a few minutes. We spent much more time on preparation. You need to know exactly which part of the heart tissue to treat, so you avoid damage to other parts and make it as safe as possible. That’s why we first made a CT scan and an MRI scan of Mr. Donker’s heart while he was in the same position he would be in during treatment. We also used the information Rutger had gathered during the ablation. This gave us a target area measuring 6.5 centimeters wide and 5 centimeters long. Inside that area was the heart tissue that was causing the problem, and we disabled it with radiation.”

Exciting
“It was exciting and a little unusual”, Sandrine adds. “Normally we treat cancer patients and make a radiation plan that avoids the heart. This time, the goal was to target a part of the heart. We did this using stereotactic radiotherapy with a very high radiation dose. We’ve used this technique for years on many different parts of the body, but this was the first time we used it on the heart.”

Less fatigue
Gijs Donker: “Dr. Van de Pol had told me that I wouldn’t feel better in the first few weeks after radiotherapy. The treated heart tissue would die off slowly, so the effect would take some time. But eventually, I started feeling better. I noticed not only that I was less tired, but I could see it from the data from my ICD, my implantable cardioverter-defibrillator.”

Fewer activations
He explains: “An ICD kicks in when there’s a dangerous heart rhythm. In my case, it gives five pulses. UMC Utrecht checks remotely how often my ICD is activated. I can also track this myself via the hospital’s patient portal. In December and January, I still had fifteen to twenty activations a month, but in February it started to go down. Now I have only two to four per month.”

Walking again
Gijs has a significant medical history and is therefore happy with the new situation. “Since 2010, I’ve had open-heart surgery, a pacemaker, and a stent. Starting in May 2021, I was taken to the emergency room several times by ambulance because of rhythm disturbances. My heart rate would be 130 or higher, and I’d feel warm, tired, and restless. Compare that to now: I can walk for 45 minutes to an hour and cycle for an hour on my e-bike. I have nothing but praise for the doctors and nurses at UMC Utrecht, not only for their medical expertise but also for the personal attention they gave me.”

Source (Dutch): https://www.umcutrecht.nl/nieuws/primeur-voor-hartpatient-gijs-donker 

A life marked by heart problems

Dick Enge is 59 years old and was born and raised in the province Noord-Holland in the Netherlands. He has been living with his girlfriend for 41 years. Before his heart problems started, he was very active and loved sports. He played soccer, squash at a high level, and also enjoyed speed swimming and water polo. 

That changed in October 1999, when Dick had his first heart attack. He had another heart attack in November 2009, and a third in February 2010. After that, he needed open-heart surgery. During this operation, doctors made four bypasses to improve blood flow to his heart.

First VT episode

In July 2011, Dick had his first episode of ventricular tachycardia, also called VT. This is a dangerous fast heart rhythm. It was so serious that he was in a coma for a week. A short time later, in August 2011, doctors gave him an ICD. This is a small device that can help correct dangerous heart rhythms.

For a few years, things were calm. But from mid-2018, the VT episodes started happening much more often. Dick says: “At one point I could no longer cope with the many VTs and the shocks from my ICD.” These repeated ICD shocks and the constant uncertainty were very hard for him emotionally. Even now, although things are more stable, some fear of the unexpected is still there.

Medication, ICD and other treatments

To control his heart rhythm problems, Dick was given medication and had two ablation treatments. In an ablation, doctors try to treat the small area in the heart that is causing the abnormal rhythm. But in Dick’s case, these treatments did not work well enough. The VT episodes kept coming back despite the treatment. He also continued taking medication. “I am still taking a lot of medicine,” he says, “which I hope to phase out in the near future.”

A new treatment option: STAR 

When the two ablation treatments did not help enough, Dick’s doctors talked to him about another option: STAR treatment. This is a very precise form of radiotherapy that, since recently, can be used for people with ventricular tachycardia. 

At that time, STAR treatment was still quite new. Dick says the doctors explained clearly what the treatment was and what it might do for him. But there were also still things that were not yet fully known, because the STOPSTORM project, which studies this treatment, had only started two years earlier. After several talks with his cardiologist and radiotherapist at AMC hospital in Amsterdam, Dick decided to go ahead with STAR treatment. “We chose the new treatment, STAR, because after two ablations the VTs were still coming back.”

Because STAR was a new treatment, Dick found it scary not knowing what the result would be. He says: “I was afraid because the outcome was not predictable. And I was afraid that the treatment would not help.” At the same time, he knew the standard treatments had not solved his heart rhythm problem.

Preparing for treatment

Before the treatment, Dick had many tests, including an X-ray, heart tests, breathing tests, MRI scans and several other checks. He says some of these tests were actually more uncomfortable than the STAR treatment itself. The radiotherapy itself took about half an hour, and Dick did not find it unpleasant at all. Because he was one of the first patients to receive STAR treatment, many doctors and researchers were there that day. Instead of making him nervous, this gave him confidence. “It made me feel like I was important”, he says.

The first weeks 

Soon after the treatment, Dick still had VT episodes and shocks from his ICD. His doctors had already told him this could happen in the first period after the radiotherapy, so while it was difficult, it was not completely unexpected. In the first six months, he also had some side effects and minor problems. But slowly things became calmer. Looking back now, several years later, Dick feels the treatment has helped him. He says: “My body is calm and I enjoy life.”

Better quality of life

For Dick, the biggest change after STAR treatment is that life feels better again. He has fewer VT episodes, and because of that, he also feels less anxious. Dick says: “The STAR treatment improved my quality of life. The anxiety is almost gone and my hope to live longer is back.” At the same time, he knows he cannot do everything he used to do. Intensive sports are no longer possible for him. “Doing sport is something that belongs to the past. That is simply too much for me.” But he still enjoys walking, swimming, doing chores at home, and the small everyday things in life. For Dick, that is enough. 

Now, more than two years after the treatment, Dick feels that STAR treatment has helped him in the way he hoped. At the same time, he is honest about the emotional impact of living with a serious heart condition. Some fear is still there, and he wonders if that will ever fully go away. But overall, the result is clear for him: fewer VT episodes, less fear, and a better quality of life.

A message to doctors and other patients

Dick is very thankful for the care and clear explanations he received. His advice to clinicians is clear: “If everyone receives the same clear information and treatments as I received in the AMC (VUMC) hospital, it will give a lot of patients peace of mind when making their decisions.”

He also has an important message for other patients: “Make sure you understand what is going on. And if some things aren’t clear, do not hesitate to ask your doctors. No question is too small or too many if you don’t know the answer.”