Survivor story: Cherine

Cherine (35) was ten years old when she was diagnosed with bone cancer. She had to choose between several intensive treatment options: one year of chemotherapy in the United States in the hope of saving her leg, amputation, rotationplasty, or removal of her knee and thigh muscles. She chose the last option. She now visits the LATER clinic at the Máxima Center and works as a LATER project manager for the Dutch Childhood Cancer Association.

Cherine shares her story: ‘I used to be very sporty and always on the move. Tennis, field hockey, skiing. At some point, I developed swelling in my left knee. My adoptive father, I was adopted from Sri Lanka, is a physical therapist. He thought it might be overuse. But the pain did not go away. When he saw the X-rays, he quickly realized something was seriously wrong. Shortly after an MRI, the diagnosis came back: bone cancer.

I was told that I would probably not be able to keep my knee. The options were amputation, removing the knee, or rotationplasty. We flew to the United States for a second opinion. My parents really wanted to know if there was an alternative treatment plan. There, we were told there was a possible chance that my knee could be saved, but only if I underwent chemotherapy for a full year. If I chose that option, our entire family would have to move to the United States. And even then, there was no guarantee it would work. That ultimately led me to choose to have my knee and thigh muscles removed.

In short, my knee and the surrounding muscles were removed. They were replaced with donor bone, including a rod and screws to reinforce the structure. Because my growth plates were also removed, I now have a leg length difference of 4.5 cm. This means I constantly have to compensate, which has resulted in chronic back and neck pain, despite wearing custom-made shoes. As a result, I am a regular visitor to my physical therapist.

All in all, I was in treatment for one and a half years. The Máxima Center did not yet exist at that time. I was treated at the Emma Children’s Hospital. I first received chemotherapy, followed by surgery. These intensive treatments left me with psychosocial challenges, and my hearing has deteriorated. In the beginning, I often felt low. I had been very athletic and suddenly that was no longer possible. Later, I became afraid of getting ill again.

I now visit the LATER clinic at the Máxima Center every year and a half. They do blood tests, kidney tests, and every few years an ultrasound of my heart. My hearing is also tested, and we talk about my symptoms. It feels like a privilege to have access to this type of care. It has helped me find a good balance with sports again. I play tennis, I cycle, walk, and hike. In September, I even climbed Mont Ventoux as part of a fundraiser related to cancer. Still, it remains a matter of finding the right balance. If I push myself too far, the back and neck pain quickly return. But I have rediscovered my identity and learned what I can still do. That feels very good.

All of this is thanks to the support and guidance of the LATER clinic, but certainly also to the Dutch Childhood Cancer Association. I currently work there one day a week as a LATER project manager. I am committed to improving LATER care and quality of life after childhood cancer. In addition, I volunteer for VOX, the working group by and for survivors, and I work three days a week for PanCare, the organization dedicated to equal access to follow-up care after childhood cancer across Europe.’