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In 2012, Jasmijn was diagnosed with a rare tumor called chordoma. "When I was diagnosed, I thought I would die. My world really collapsed for a moment," she recounts. Now she looks back on her treatment and recovery period, "It was tough, very tough."

Chordoma is a rare malignant tumor found in about 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 places between the skull and tailbone.

For Jasmijn, it all started with symptoms in her neck. "My family doctor first thought it was stress," she recalls. The symptoms just kept getting worse. "At one point, I experienced a loss of feeling of the right side of my tongue, which resulted in me speaking incoherently. The family doctor suspected there was something else going on, 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 result of the scan was not good: a chordoma was found in her head. "I was 22, in the prime of my life and still in college. One moment you still have great plans for the future and not much later you are suddenly a cancer patient with a whole treatment process ahead of you. That was quite a shock."

She remembers the moment of the diagnosis well. "They told me, 'There's something in your head, and it doesn't look right.' I had no idea what that meant; I had never heard of a chordoma either. The doctor explained it to me, but I didn't know anything else. Before starting my treatment, I was completely unfamiliar with the world of cancer. I didn't even know the difference between chemotherapy and radiation, let alone anything about a rare type of cancer."

A lot of uncertainty and little information

Not only for herself was the news difficult to process. "It was also difficult for my friends and my family, especially my parents. On top of that came a feeling of constant uncertainty. After all, in 2012 there was hardly any information to be found about chordoma and its treatment options."

"The information was so general that I couldn't do use it," Jasmijn continues. "From what I read life expectancy was a year, but a complete cure was also possible. Fortunately, more information is now available about chordomas. Thus, the chance of a good recovery is reasonably high: 70 percent."

Treatment at the LUMC

That same year, Jasmijn had two operations at LUMC. In 2013, radiation treatments also followed 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 me some peace of mind. I also tried to radiate that positivity to friends and family."

Recovery is a team effort

Fortunately, the treatments worked, and Jasmijn is now fully recovered. She completed her studies and now works in healthcare with the disabled. According to her, the recovery process could do with more attention. "After my radiation treatments, I fell into a black hole, proverbially. I was eager to pick up my life again, but had much less energy than before, for example. In addition, the first year after the treatment process was super exciting because somewhere you are still afraid that the tumor could return. Nothing was the same as before, which was very difficult for me to accept."

What helped Jasmijn was to talk with fellow sufferers. "Through a center in Nieuw Vennep, I eventually came into contact with other young women who had gone through the same thing as me. That did me a lot of good. People who run into the same things understand very well what you are going through. I also started a blog at that time, so that other people in my situation could also learn from it. I had quite a lot of reactions to it at the time, also from other patients who could draw strength from my story. I'm glad I was able to support others that way."

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