“Ma’am, you have a thymoma.”

With these words, Yannick (53, not her real name) was told of Overijssel at the end of last year that she was ill. She wasn’t sure if she should be really scared or panicked. She had no idea what a thymoma was.

“It was a thymus tumor, I learned then,” she says. “Then a whole new world opened up for me. Before, when I thought of the word ‘candy bread,’ I thought of the veal bread served in restaurants. I didn’t actually realize that people had one too. You’re sick.”

rare

About a hundred times a year someone in the Netherlands receives the same diagnosis as Janneke. Floret Marcuse, a research physician at UMC+ Maastricht and a pulmonologist in training, has spent years researching the rare tumor and will award his doctorate next week on the topic. Her conclusion: thymus disorders are rare, but the care of these patients could be better in our country.

“Everyone has the thymus, but almost no one knows it. It weighs about 40 grams and is located behind the sternum, near the lungs and heart. The thymus is indispensable for a child: it nourishes our immune system without the thymus. You will get a lot of infections.”

But after puberty, this immune system is sufficiently trained and it appears that the function of the thymus is over. The organ stays in place, but shrivels up, like a raisin, is barely visible and is only slightly active in infections, like some people with Covid19.

Often no complaints

Only something could grow in that deflated raisin: a thymoma. “A lot of people don’t immediately notice that they have it,” Marcuse says. “With lung cancer, for example, you often have chest pressure, shortness of breath, cough, and general malaise. But thymus often doesn’t cause any complaints.”

This is insidious, because the tumor must be removed as soon as it is detected. “It’s not a benign tumor,” Marcuse emphasizes. “It’s one of the best boys at separating tumors. In addition to the fact that it grows slowly, it also does not spread very quickly and persistently. However, these tumors can grow large and spread. Misbehave, for example example because it grows into the surrounding tissue.”

accidental

Diagnosis is often made by chance, Marcuse learned from her research. “For people to scan for something else, and for doctors to suddenly see an area where the thymus was.”

Doctors also found out about Janneke by accident. “I ended up in the medical mill from one moment to the next. I had to have chemotherapy in the hope that the tumor would get smaller and less attached to the tissue around it. Only then could surgery be done.”

Marcuse explained that candy bread has been removed at Maastricht UMC+ since 2004 using a robot. “This does not mean that the doctor can turn it on and then eat a sandwich in the canteen: the surgeon sits in some kind of console and controls the arms of the robot via a computer. That way he can work more precisely, so that there is no creak from a wound on the sternum, which is better than it was on it when the sternum was fully opened.”

Could be better

But care for patients with thymic adenomas can still be improved, Marcuse says after her doctoral research. For example, a quarter of patients with a thymoma will receive radiation after surgery to treat any remaining malignant cells. “My colleagues and I have discovered that it is not only the radiation oncologist who decides which areas need radiation, but also the surgeon, in order to be able to provide more targeted and better radiation.”

Additionally, Marcuse states in her research that there should be national guidelines for treating thymic tumors. She is now working on this with her colleagues from the rest of the country. “Because so little is known about this, every doctor from every hospital should be able to get the same correct information. And the more well-known something is, the faster a diagnosis can be made and the right treatment given.”

muscle disease

Marcuse and her team discovered something else: They saw that 11 percent of patients with thymoma had the rare muscle disease myasthenia gravis, without experiencing any symptoms. According to doctor-researcher Floret Marcuse, this is an “important result”, so that patients with thymoma can also be informed and checked for this muscle disease in a timely manner.

The disease can lead to double vision, problems with swallowing and speaking, and even failure of the respiratory muscles. Marcuse also discovered that the surgical technique with the robot contributes well to improving muscle strength in most cases.

optimistic

For Janneke, treatment came on time. It was a crazy idea to be powered by a robot, says Janneke, and yes, there was fear, but also hope. “After the operation, the surgeon said it was successful: the tumor is well encapsulated, contrary to expectations.”

Janneke is slowly getting better. She’s feeling fit again, can walk a lot, bike again, and have an appetite again, but when she thinks back in the past few months, she’s overwhelmed with a feeling: What have you been through? “A thymoma has dominated my daily existence for eight months. Checkups, conversations, treatments. Every time I’ve been able to put my shoulder to the wheel again, because of the people around me. Now I’m mentally processing everything.”

more fame

Janneke also believes that it would help patients if more was known about the disease. “Of all the people I’ve told about my illness, only one has said, ‘Oh, I know what this is.’ I sometimes feel a little lonely.”

So she is happy with this patient organization lung cancer in the netherlands Recently also provides information for people with thymoma on the site, and patients can also register there for communication with fellow sufferers and informational interviews. “Hopefully people will know that the thymus is not just a dish, but also an organ where things can go wrong a lot.”

(Janneke’s name has been changed for privacy reasons. Her real name is known to editors.)