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A Long Road to Answers
15/07/2026
This article is part of the “Healing in Two Voices” series developed within the e-QuoL project, which brings together survivor voices and professional reflections on life after childhood and adolescent cancer. In this series, professional contributions do not aim to add explanations or conclusions. They create spaces for reflection — ethical, psychological, and clinical — opened by the testimonies themselves.
1
In November 2025, during a long-term follow-up consultation, the oncologist and I realized that I did not have any neurological follow-up. It took time to get an appointment, and it was only scheduled five months later.
Having been treated for a brainstem tumor at the age of four, I sometimes experience strange sensations, the more or less vague feeling that something is not quite right.
One month after my long-term follow-up appointment, just before Christmas, I realize that I am having great difficulty walking and feel completely disoriented. I arrive at the nearest emergency department on December 23rd at 6 p.m. At midnight, they place me in a room. At 2 a.m., an emergency physician arrives and asks me what I am doing there. Neurology clearly did not seem to be his thing — and a former childhood cancer patient even less so…
At 5 a.m., they finally find me a room.
The next day, December 24th, their MRI machine was not working.
I am taken to another hospital. No stroke, so they discharge me.
And yet I could clearly see that I was struggling to walk, and I went home without any explanation.
Of course, I was relieved not to have had a stroke, but I still felt deeply unsatisfied.
In addition to the walking difficulties, this lack of recognition became a source of anxiety and anger — toward myself and toward the medical world. It was as if I was being told that nothing had happened to me and that everything had been in my head. I no longer knew what to think. I doubted everything, starting with myself.
Time passes, and my condition improves thanks to intensive physiotherapy, although not completely.
I like my physiotherapist very much. He is very pragmatic and used to tell me:
“In the end, it’s not that important to know exactly what it is — what matters is making progress in recovery.”
In a way, he was right, but I still felt unsatisfied.
And finally, the neurology appointment arrives. The neurologist, who is very kind, is used to seeing former patients like me. I had a feeling that neurology was not limited to analyzing an MRI, and that the absence of a stroke did not mean the absence of a neurological problem.
And indeed, after ten minutes of clinical examination, the diagnosis was made:
“Loss of anti-gravity reflexes.”
Walking is not as simple as it seems.
If you hear a noise on your right and suddenly turn around, a signal is immediately sent by your brain to your right hip so it can compensate for the sudden shift of your body weight to the right.
Otherwise, you fall over!
It’s fascinating.
You’d better like science when you are a former patient — you have a front-row seat, especially since the science of survivors is a science beyond the ordinary.
And beyond the diagnosis, there is also a treatment: the neurologist writes a letter to my physiotherapist so he can adapt my exercises.
In short, when you knock on the right door, things are always easier. But when you are a former patient, the right doors are rare. And without long-term follow-up, they are very difficult — sometimes impossible — to find.
And then, a diagnosis is reassuring. Putting words to suffering is already a way to begin healing.
Charles, a French CAYACS
2
What is difficult is hearing harsh words at the same time that late effects are finally diagnosed, when they are already present, after a long period of medical wandering, because primary care physicians do not make the necessary connections with past treatments and specialists never warned us beforehand.
Annik, a French CAYACS
3
Sometimes, I feel like the hospitals may have the knowledge about late effects, but outside of specialized follow-up clinics, there is still a lot of uncertainty. General practitioners often do not know what to look for or how childhood cancer treatments can affect us years later.
Over time, I have learned to recognize that some of the symptoms I experience may be related to late effects. Understanding this is important, even if it can sometimes feel brutal or frightening. At least knowledge gives meaning to what is happening.
What is difficult is that, when I go to a doctor with a problem, I often feel that I need to explain my own medical history, suggest what they should investigate, or help them connect the dots myself. It can feel like being lost in a jungle, not knowing who to ask, which direction to take, or which door to knock on.
Living after childhood cancer often means learning to navigate uncertainty while searching for professionals who truly understand the long-term consequences of treatment. And sometimes, simply finding someone who listens and understands can already feel like finding a path through the jungle.
A Norwegian CAYACS
4
These testimonies deeply resonate with what many CAYACS experience: the difficulty of being heard, understood, and guided toward the right professionals when complex symptoms arise, sometimes decades after treatment.
“When you grow up with a body marked by cancer and its treatments, you learn very early on to notice unusual signals.”
These bodies carry a particular history, often profoundly transformed by illness, surgeries, chemotherapy, or radiotherapy. Medical tests do not always clearly identify the cause of symptoms, and some late effects remain poorly understood or difficult to explain.
Many former patients know this wandering, these pains without clear answers, this immense physical and emotional exhaustion in front of professionals who are sometimes helpless, sometimes awkward, and sometimes even hurtful.
When you have lived for decades with a body transformed by treatments, every examination and every consultation can become an ordeal.
The hardest part is not only the pain.
It is also not feeling heard.
Leaving an appointment feeling even more alone than when you entered.
When people remain for a long time without answers or recognition of what they are experiencing, it can also become more difficult to know whom to trust.
Some people may then turn toward simplistic explanations, pseudo-therapies, unreliable information, or forms of support that are sometimes inappropriate, or even dangerous.
This shows how important it is to have access to trained professionals who are able to listen, support, and help survivors understand what is happening to them.
These stories also show how exhausting the lack of answers can be. Medical wandering, doubt, and the feeling of not being recognized in what one is experiencing can become a form of suffering in themselves. Conversely, finally meeting a professional who understands the long-term consequences of childhood cancers, who listens and takes the time to investigate beyond images and standard test results, can change a great deal.
As former patients, patient advocates, and professionals involved in long-term follow-up care, we know that these experiences are not isolated. Neurological, orthopedic, painful, or functional late effects can be complex, evolving, and sometimes invisible. They require specific expertise, but also genuine attention to the lived experience of survivors.
But these testimonies also tell another story: the incredible adaptability of the human body. Despite treatments, surgeries, pain, or invisible disabilities, many survivors continue to move forward, relearn, compensate, and regain a balance that may sometimes be fragile but remains profoundly alive. The body keeps scars, but it also possesses extraordinary resources.
Long-term follow-up is not only about checking that cancer does not return. It is also about accompanying survivors over time, sometimes very long after treatment, and helping them know where to turn when new symptoms appear. Knowing that there are still doors to knock on, even years or decades later, is an essential source of reassurance and safety for many survivors.
Charles’ testimony reminds us of one essential thing: putting words to suffering is already a way to begin looking forward again and to revive hope and morale.
Schweizerische Eidgenossenschaft