After Treatment: Wanting to Return to Life

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

I had cancer at 13 years old, an osteosarcoma located at the bottom of my back (between lumbar and sacrum). At the end of my treatment (at 14 years old), the doctors said the tumor had disappeared. The treatment with chemotherapy and radiotherapy was efficient. But they told me I needed follow-up to make sure there would be no relapse, as this kind of cancer has a risk of coming back (especially in the lungs).

The discussions were mainly focused on organizing long-term follow-up consultations and medical examinations (MRI, blood tests, etc.). As my cancer had compressed the nerves, we planned a series of physiotherapy sessions to improve my walking and the muscles in my legs.

My main concern was recovery after one year of intense treatment. Will I recover everything as it was before my cancer? What will be the main long-term effects in my life? Will I recover my neurogenic bladder?

The doctors answered that they did not know how far I would recover, because the cause was neurological. It is difficult to know because it depends on many factors. I was a little disappointed by such an answer and somehow felt that I had to make even more effort to recover completely. I felt the discussion was very rational, not very human regarding what I had lived through or about how I would have to adapt myself to the real world.

I also had to take quite a lot of medication for neurological pain, but the doctors reassured me that the dose would decrease over time.

Strangely, I was not afraid of becoming sick again. I wanted to return to real life and meet my friends, who are very important at that age.

DGA, a French man

2

When treatment ends, doctors often focus on follow-up appointments, scans, and making sure the cancer does not come back. These things are important.

But if you are a teenager, your questions may feel very different. You may be thinking about things like:

• Will I be able to walk normally again?
• Will my body feel the same?
• Can I go back to school and see my friends?
• Will my life be like before?

Sometimes doctors honestly say “we don’t know yet.” This can feel frustrating, because when you are young you just want to move forward and get your life back.

Survivorship is not only about staying cancer-free. It is also about rebuilding your life — regaining strength, confidence, independence, and reconnecting with friends and everyday life.

And your questions and feelings are an important part of that journey.

Dr Charlotte Demoor-Goldschmidt, Survivorship Medical Doctor expert – Radiation oncologist CHU Angers, CHU Caen, Inserm U1018, France

3

This testimony illustrates the gap that can exist between what actually happens during a medical consultation and what the patient wishes would happen there. But also between what the patient may need to hear and what the physician is realistically able to say.

One of the difficulties for patients may lie in the uncertainty about the future. This difficulty directly confronts the limits of medicine: we cannot always predict, we cannot always know. And this can be painful to hear.

This is also why some long-term follow-up consultations are conducted jointly by a physician and a psychologist. Because the work may lie precisely there: what can be done with this absence of answers? What can be done with these uncertainties? How can someone adapt and continue living in the real world without knowing what will happen?

Even if it is not always easy, it is important to say so if you feel that you are not being listened to enough, if an answer (or the absence of a clear answer) hurts you, or if you feel that the discussion lacks humanity.

You can also reach out to another healthcare professional to talk about your feelings and experiences. Your feedback is valuable for professionals, who continue learning every day and improve their practice thanks to patients like you.

Louise Hinckel – Clinical psychologist in the long-term follow-up department at Angers University Hospital

4

Reading DGA’s testimony made me realize that remission is not simply a biological transition, but a profound existential shift. Once treatment ends, the immediate danger may recede, yet the patient is left trying to make sense of an entirely altered reality.

While surviving cancer is often presented as a collective milestone, the psychological integration of survival is deeply individual. There is no universal way to process this kind of trauma, and every patient develops different emotional responses and coping mechanisms when returning to everyday life.

DGA’s testimony also illustrates the disconnection that can occur when medicine remains purely clinical, leaving a young person alone with uncertainty about their future.

My own experience was very different, largely because of my pediatric oncologist, Professor Jelena Roganović. She never dismissed my fears or frustrations because of my age. Instead, she understood that emotional reassurance was essential before we could face the illness itself with clarity and calmness.

Because of her approach, the fear of whether I would survive or what my future would look like never fully took root, despite the physical and psychological challenges that naturally accompanied treatment.

Ultimately, DGA’s experience reminds us that medicine cannot be purely technical. Recovery is shaped not only by clinical protocols, but also by the relationship between patient and physician.

Every patient needs a different kind of support in order to feel safe.

For me, the warmth and consistency of the oncology team became a true sanctuary throughout survivorship.

While uncertainty is unavoidable, a compassionate relationship with a primary oncologist can protect a young patient from the emotional disorientation that often accompanies survival.

Erin Rupčić, Croatia

5

When treatment ends, follow-up care begins almost immediately. Imaging schedules are set, laboratory monitoring is organised, and rehabilitation referrals are confirmed. The clinical system quickly re-establishes surveillance routines.

Beyond this initial phase, survivorship care becomes organisationally more complex. Responsibility is distributed across multiple services — oncology, rehabilitation, primary care, and organ-specific specialties depending on late effects. In this configuration, no single consultation fully contains the longitudinal trajectory of care.

Within this transition, certain clinical questions remain without clear or immediate answers — particularly those related to long-term functional recovery and late effects. These uncertainties may reappear across different stages of follow-up without a single point of synthesis.

This raises ongoing questions about how continuity is maintained once the paediatric oncology team is no longer the central coordinator of care.

Jelena Roganovic – Pediatric oncologist. Children’s Hospital Zagreb, Croatia