Can I still get a mortgage?
Can I still work?
How am I supposed to tell my friends?
These were all questions that went through the mind of Lisanne de Groot (33) when she was told at the age of 28 that she had an aggressive form of breast cancer. It was treatable, she had a good chance, the doctors said, but they didn’t tell her about that mortgage, or about working through cancer, or about that awkward conversation with her friends.
“When you are young, you are in a completely different phase and you have different needs. I was in a group of friends with eight girls. Five were pregnant or had just given birth, one was getting married, I got cancer. That felt very wry, I didn’t begrudge my friends, but I also wanted a normal life myself. I couldn’t, so I struggled with that.”
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She was out of step with her healthy peers. But she was also out of step with her fellow sufferers: they were often older, middle-aged. “It was lonely at times. Your life stands still, and there are few people who feel what you feel, as a sick twenty-something.” Looking back, Lisanne would have liked some psychological guidance from someone who knows what can come to people when they get cancer in that specific young phase of life.
Research
Lisanne is not alone in this. The Comprehensive Cancer Center of the Netherlands and the National AYA Care Network did research among 4000 young cancer patients† This shows that three-quarters still struggle with fatigue symptoms for some time after the diagnosis, and almost half of the group did not receive additional psychosocial care, while there may have been a need for it.
Half of the (ex-)patients surveyed also indicated that their cancer and its treatments led to limited career opportunities.
“Good care for a cancer patient is not just about the tumor, or about the treatments,” says Lisanne. According to her, it should also be possible to address questions such as: how do you apply for disability benefit? Do you tell on your first date that you have cancer? What about insurance?
For example, it has been known for some time that it is very difficult and very expensive for ex-patients to get insurance. This is explained in the video below:
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Lisanne believes that there should be more ‘people-oriented’ care instead of ‘tumor-oriented’. “We are more than a tumor on legs.”
“The care must be broader, and at the same time more age-specific,” says Yolanda Selma (33), who heard three years ago that she had metastatic lymphoma. Healing is no longer possible, a slap in the face, but still stretching. That’s the straw she’s holding on to. “I walked around with complaints for ten years, from swollen glands in my armpits to fatigue and dizziness and I often had the flu.”
Listen better
She was told ‘burn-out’ by two different GPs, because yes: Yolanda was young, had six children, a busy job. “I think that if I had been older, I would have been referred earlier with these complaints. Then I might have had a chance of recovery.”
Yolanda believes that patients should be listened more carefully. “Not every vague complaint of fatigue means a burnout. Young people can also get sick. At one point I asked the man: isn’t it cancer? The doctor waved it off and I went along with relief, because of course I didn’t want to get confirmation on that question, but if someone has crossed that threshold and literally asks that difficult question, that should actually be a signal that you should refer them.”
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Once Yolanda was diagnosed, she noticed there was more to it than just “having cancer and being treated.” “My mother is still young, just like my partner. Who will take care of me when I am sick? And who will take care of the children? There were hardly any extra childcare options available. While I am really not the only young mother who is sick. “
Thousands
32,000 young adults are now living with or have had cancer, the report finds. They are called ‘ayas’ in the medical world (adolescents and young adults† To improve care for young adults with cancer, specialized nurses need to be trained. The Comprehensive Cancer Center of the Netherlands and the National AYA Care Network are advocating for this.
“I didn’t even know what ‘aya’ meant,” says Lisanne. “It wasn’t until I heard that term at a cancer conference a year after my diagnosis that I thought: aahaaa! So much fell into place.” And Yolanda says about that term: “I vaguely knew what it meant, but when I entered a special aya lounge in the hospital in Groningen, it was completely empty. Too little is known about this group of patients.”
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More awareness, a special team of nurses, but also contact with fellow sufferers can help. Lisanne: “You can talk without noise or discomfort, you no longer talk about bullshit. Life is no longer about that career, that big house or that car.”
Although many young people struggle with their work when they are sick. To work or not to work during your chemo? Should you or should you not tell your new employer that you have (had) cancer? For example, Lisanne got the feeling that when her hair had grown back and she took off her wig, her boss thought: well, that one is better. “But I still had so much after-effects from the treatments, I was tired, and I still am occasionally, even now that I’m clean.”
After the treatments, Lisanne stopped her job as a lawyer in consultation with her employer. Despite multiple reintegration attempts. “I think if I had had help from a professional, it wouldn’t have gone like this. Then maybe my employer and I would have understood each other better.”
Other goals
At the same time, the disease also taught her a lot. She appreciates life and her health even more, for example, and she also learned to set her own limits. “You look for other goals in life, another way to give meaning to your life.”
That is exactly the reason that Yolanda shares her story. Yes, she finds it exciting, and yes, it is vulnerable, but: “It is necessary to improve care in the Netherlands for young cancer patients. I would like to contribute to that. I see it, in the meantime, as a nice piece of legacy. ”
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