“You have direct effects such as erection problems or vaginal dryness,” says researcher Vicky Lehmann, “and you have side effects: you go bald, you have scars or you gain a lot of weight. Those are things that make you feel uncomfortable and uncomfortable in your body. Then it becomes a sexually complicated story for yourself and your partner.”
In her research, Lehmann sees that young adult cancer patients “go into a survival mode” in the beginning. “Then they fall into a black hole and the emotional side effects of the story come in handy. How do you deal with that when you start dating again; how do you tell a new or your current partner?”
Survival mode
Suzan Koenis recognizes these problems like no other. Twelve years ago, at the age of twenty-two, she was diagnosed with acute leukemia and three years later again with cervical cancer. “The consequences of cancer were very heavy. I had a stem cell transplant for leukemia, after which I spent eight days in the ICU, not knowing if I would survive. I was bald and gained ten kilos because of all the fluid I retained . I was super insecure about myself.” But she was not assisted by doctors.
“The day after I was diagnosed, I was told I couldn’t have any more children. You’re in survival mode and going on and on; it was all normal for it to happen. It was ‘normal’ that I was 21 weeks in quarantine. Afterwards I only thought: what have I been through and how do I deal with it?” It was not possible to discuss this subject with doctors. “I was not concerned with that: I was told on Thursday that I had leukemia and chemo started on Friday.”
Return to society
“I actually wanted a conversation to have taken place before I actually returned to society,” says Koenis. “I was in a bubble of 21 weeks of quarantine and then I went home. I wanted to go into society: no longer be sick and be found pathetic.” She wanted to work and go to school again. “My life fell apart when I was diagnosed.”
“It wasn’t until two years later that the mental blow came,” she says. “When I was diagnosed with cervical cancer. Only then did I realize that I hadn’t processed it and I talked to a psychologist. I actually wanted to know what awaited me when I returned to society; how I could get my life back on track. I was bald then, I had no mucous membranes left, it was all destroyed. Being intimate with your partner for the first time was very difficult, for both of us. My ex found it very difficult at the time, he was afraid to to hurt me.”
When that relationship ended and Koenis met her current partner two years later, she faced new problems: “How am I going to tell him that I have had cancer and that I can no longer have children. How will he react to that?” She hadn’t heard healthcare providers talk about such issues.
Negotiable
Today Koenis is active as an ambassador for the AYA foundation, which wants appropriate care for young adults with cancer. “They need different care than children or people over 40, for example,” Koenis knows from experience. She wants guidance from a mental coach or social worker and attention for the problems of young adults. “Or get handles to grow together with your partner: how do you deal with childlessness and what are your wishes?”
According to Lehmann, young patients are not properly informed about side effects in practice, which means that the blow hits harder. But, she says, healthcare providers do not always find it easy to provide information about this. Although, for example, nurses are willing to discuss matters outside of cancer. And just making something negotiable already helps, she says. “It often starts with opening a conversation. Then you know as a partner that you can start talking about sex, instead of assuming that they don’t feel like it or don’t want to impose themselves.
