‘Sometimes I have to switch gears: from my role as a physician-researcher to an appointment as a patient at the LATER outpatient clinic.’

Switching gears 

Nikita: ‘Sometimes I have to combine my workday with a visit to the LATER outpatient clinic. I've been going there since 2018. This year, I also started seeing a psychologist there. It still feels strange. In the morning, I'm upstairs at the Máxima Center, working on my laptop. And in the afternoon, I'm a few flights of stairs down, seeing a psychologist for myself. That's when I have to switch gears. I usually say: I'm still in work mode, just give me a moment. 

When I was three, I had a Wilms tumor. I was treated at Amsterdam UMC, AMC location. I received chemotherapy and had surgery to remove one of my kidneys. Now, twenty years later, I'm at risk of reduced kidney function. I also have an increased risk of heart failure and other late effects. 

Something to do with childhood cancer 

I still find it difficult to look at pictures and videos of myself as a child. They make me feel physically uncomfortable. They take me back to that time. 

I knew early on that I wanted to do something related to childhood cancer. I was especially interested in learning more about Wilms tumors. During my studies, I sent several emails to the Princess Máxima Center because I really wanted to work there. And it worked! I joined the research group led by Professor Marry van den Heuvel-Eibrink as a student, under the supervision of Dr. Madeline van der Perk. After graduating, I continued in the group as a PhD student. 

The PAREL study 

My PhD research focuses on fertility in girls who have or have had childhood cancer. Together with UMC Utrecht, we're investigating how often fertility problems and premature menopause occur. Nurse practitioners at the Máxima Center and gynecologists at UMC Utrecht also provide information and counseling about these issues. 

As part of the PAREL study (Preserving ovARian function through cryoprEservation and informing girLs with cancer about infertility due to gonadotoxic treatment), we evaluate our fertility care in collaboration with UMC Utrecht. The study focuses on preserving fertility through fertility preservation procedures and informing girls with cancer about the potential impact of treatment on their fertility. 

Chemotherapy and radiation therapy can cause infertility. We know that children with certain types of cancer, such as neuroblastoma, Ewing sarcoma or medulloblastoma, have an increased risk. Radiation therapy to the pelvis or abdomen can also affect the ovarian reserve and uterus. 

We've now completed all the study procedures. Participants completed a survey about six months to a year after their initial appointment with the gynecologist. We asked them about their experiences with fertility care at the Máxima Center and UMC Utrecht. 

For some of the children who had an ovary frozen, we carried out additional tests, including blood tests to measure hormone levels. We also investigated the safety of the surgery to remove and freeze an ovary for fertility preservation. In addition, we looked at the quality of fertility care provided to all children with childhood cancer at our center, both boys and girls. 

The future 

Sometimes I read responses to the surveys and think: I recognize that. It brings up mixed feelings. On the one hand, it's confronting. On the other, it makes me feel that I'm not alone. 

Before I started this research, I hadn't really thought about whether I would be able to have children myself. Or whether it might be difficult. This work has changed the way I think about it. It has prompted me to look at my own situation. 

I received treatment that carries a low risk of reduced fertility. Even so, my gynecologist can't say exactly what that means for me, because there's still a lot of uncertainty about fertility after childhood cancer. The advice I've been given is not to wait too long if I want to have children. 

Perfectionism 

My own experience gives me extra motivation. I want to make sure that everything I write is accurate. I want gynecologists to have reliable information so we can improve care and, in turn, inform and help more children and parents. I work very carefully to achieve that. 

I know I'm a perfectionist when it comes to this. I just really want to get it right. I also feel a sense of responsibility. 

I'm a survivor. That's part of who I am. I can't pretend it isn't. It's something I have to live with. Fortunately, I'm in a supportive environment in Marry's research group. Whether it's about work or something personal, I can always turn to her and my colleagues.’