“Ma’am, you have a thymoma.”
With those words, Janneke (53, not her real name) from Overijssel was told 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 tumor in my thymus, I learned afterwards,” she says. “Then a whole new world opened up for me. Before, when I thought of the word ‘sweetbread’, I thought of the veal sweetbreads served in restaurants. I was actually not aware that people have one too. And that you it can make you sick.”
Rare
About a hundred times a year someone in the Netherlands receives the same diagnosis as Janneke. Florit Marcuse, doctor-researcher at Maastricht UMC+ and pulmonologist in training, has spent years researching the rare tumor and will be awarded his doctorate next week on the subject. Her conclusion: Thymus disorders are rare, but the care for these patients could be better in our country.
“Everyone has a thymus,” says Marcuse, “but hardly anyone 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 thymus you would get a lot of infections.”
But after puberty, that immune system has been ‘trained’ enough and the function of the thymus appears to be over. The organ stays where it is, but shrivels, like a raisin, and is barely visible and only slightly active in infections, like some people with Covid19.
Often no complaints
Only something can grow in that shriveled raisin: a thymus tumor. “A lot of people don’t immediately notice that they have it,” says Marcuse. “With lung cancer, for example, you often suffer from pressure in the chest, shortness of breath, cough, general malaise. But thymomas often cause no complaints.”
And that is vicious, because the tumor has to be removed as soon as it is discovered. “It is not a benign tumor”, Marcuse emphasizes, “it is one of the better boys in the class among the tumors. Besides the fact that it grows slowly, it also does not metastasize very quickly and persistently. However, these tumors can grow large and spread. misbehave, for example because they grow into surrounding tissues.”
By chance
The diagnosis is often made by accident, Marcuse knows from her research. “That people have a scan made for something else, and that doctors suddenly see a sphere where the thymus used to be.”
The doctors also found out about Janneke by accident. “I ended up in the medical mill from one moment to the next. I had to receive chemotherapy in the hope that the tumor would become smaller and less adhered to the tissue around it. Only then could it be operated on.”
The sweetbreads have been removed at Maastricht UMC+ since 2004 with a robot, explains Marcuse. “That does not mean that the doctor can turn it on and then eat a sandwich in the canteen: the surgeon sits in a kind of console and controls the arms of the robot via a computer. In this way he can operate more precisely, so that no There is a squeak from a wound on the sternum, which is better than it used to be when the entire sternum was opened.”
It could be better
But the care for patients with thymus tumors could still be improved, says Marcuse after her PhD research. For example, a quarter of patients with a thymus tumor will receive radiation after surgery to tackle any remaining malignant cells. “My colleagues and I found out that it is not only the radiation oncologist who has to decide which areas need radiation, but also the surgeon, in order to be able to provide more targeted and better radiation.”
In addition, Marcuse states in her research that there should be national guidelines for the treatment of thymus tumors. She is now working on this, together with colleagues from the rest of the country. “Precisely because so little is known about it, every doctor from every hospital should be able to get the same, correct information. The more well-known something is, the faster a diagnosis can be made and someone gets the right treatment.”
muscle disease
Marcuse and her team discovered something else: they saw that 11 percent of patients with a thymoma have the rare muscle disease myasthenia gravis, without experiencing any symptoms. According to doctor-researcher Florit Marcuse, this is an ‘important outcome’, so that patients with a thymoma can also be informed and checked for this muscle disease in time.
The disease can lead to double vision, swallowing and speaking problems and even to failure of the respiratory muscles. Marcuse also discovered that the surgical technique with the robot contributes well to improving muscle strength in the majority of cases.
Hopeful
For Janneke, the treatment came on time. It was a crazy idea that she would be operated on by a robot, says Janneke, and yes, there was fear, but also hope. “After the operation, the surgeon said that it was successful: the tumor was well encapsulated, contrary to expectations.”
Janneke is slowly improving. She feels fit again, can walk a lot, cycle again, has an appetite again, but when she thinks back on the past few months, a feeling overwhelms her: what have I been through? “My daily existence was dominated by this thymoma for eight months. Examinations, conversations, treatments. Every time I could put my shoulders to the wheel again, because of the people around me. Now I am mentally processing everything.”
More fame
It would help patients if more was known about this disease, Janneke also thinks. “Of all the people I told about my illness, only one said, ‘Oh, I know what that is’. It sometimes feels a bit lonely.”
She is therefore pleased that patient organization Lung Cancer Netherlands has recently started offering information for people with a thymoma on the site, and that patients can also register there for contact with fellow sufferers and information meetings. “Hopefully this will teach people that the thymus is not just a dish, but also an organ with which things can go very wrong.”
(Janneke’s name has been changed for privacy reasons. Her real name is known to the editors.)