In 2012, Jasmijn was diagnosed with a rare tumor called a chordoma. "When I was diagnosed, I thought I was going to die. My world really fell apart for a moment," she says. Now she looks back on her treatment and recovery. "It was hard, very hard."
Chordoma is a rare malignant tumor that is diagnosed in approximately 15 Dutch people each year. Worldwide, there are about 1 million adults with chordoma. The tumor originates along the spine and can occur in various locations between the skull and the tailbone.
For Jasmijn, it all started with symptoms in her neck. "My family doctor thought it was stress at first," she recalls. The symptoms just kept getting worse. "At one point, the right side of my tongue fell out, and I could only speak with a double tongue. The GP didn't trust it and I was referred to Leiden University Medical Center (LUMC).
Suddenly you're a cancer patient
Not much later, she was in the CT scanner. Unfortunately, the results of the scan were not positive: a chordoma was found in her head. "I was 22, in the prime of my life, and still in college. One moment you have great plans for the future, and not much later you are suddenly a cancer patient with a whole treatment process ahead of you. It was quite a shock”.
She remembers the moment she was diagnosed. They told me, 'There's something in your head and it doesn't look good.' I had no idea what that meant; I had never even heard of a chordoma. The doctor explained it to me, but that's all I knew. Before I started my treatment, I was completely unfamiliar with the world of cancer. I didn't even know the difference between chemotherapy and radiation, let alone a rare type of cancer.
A lot of uncertainty and little information
The news was not only difficult for her to process. "It was also difficult for my friends and family, especially my parents. There was also a feeling of constant uncertainty. After all, in 2012, there was very little information available about chordoma and its treatment options."
"The information was so general that I couldn't do anything with it," Jasmijn continues. "From what I read, it could be over with me within a year, but a complete cure was also possible. With so many different kinds of information, it is difficult to get a clear picture. Fortunately, more information is now available about chordomas. As a result, the chances of a good recovery are quite high: 70 percent.
Treatment at LUMC
The same year, Jasmijn underwent surgery twice at LUMC. Radiotherapy also followed in 2013 in Heidelberg, Germany. “Throughout the treatment period, I was in a kind of survival mode, taking it one step at a time. I thought, 'I've got it and so I'm also going for the treatment course completely.' That gave some peace of mind somewhere. I also tried to radiate that positivity to friends and family.”
You recover together
Fortunately, the treatments worked and Jasmijn is now fully recovered. She managed to finish her studies and is now working for the municipality. According to her, the recovery process could use more attention. "After my radiotherapy, I literally fell into a black hole. I was eager to get on with my life, but I had much less energy than before. In addition, the first year after treatment was super exciting, because somewhere you are still afraid that the tumor could come back. Nothing was the same as before, which was very hard for me to accept. There are still problems that Jasmijn has to face. For example, she suffers from late radiation damage. Her pituitary gland was damaged, and she also has problems with her hearing and speech. "Fortunately, I have very nice and understanding doctors around me, who always take me very seriously and think with me about the right treatment. But unfortunately they cannot solve everything. So I will also have to learn to live with certain inconveniences".
What helped Jasmijn was talking to other sufferers. "Through a drop-in center in Nieuw Vennep, I eventually got in touch with other young women who had gone through something similar to me. That did me a lot of good. People who have gone through the same thing understand what you are going through. That way you can heal a little bit together. I also started a blog so that other people in my situation could learn from it. I got a lot of feedback from other patients who were able to draw strength from my story. I'm glad I was able to contribute to the process they were going through in that way.