The Moment It Was Written ‘Cured’

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 was ill at 12, and then again at 15.

About fifteen years after my relapse, I received a report from a long-term follow-up appointment. It was the first time I saw, written in black and white, that I was ‘cured’. Even though this long-term follow-up doctor had already told me this verbally once, seeing it written moved me deeply. My shoulders relaxed, and something inside me settled. I can still picture that moment clearly, even though it happened about ten years ago.

Looking back now, I stand by that statement and hope it continues to be written. And alongside it, I would add: ‘ongoing, comprehensive follow-up is necessary (blood tests, cardiac, psychological, etc.), and we will be there to support you through this new stage of life after illness.

Marlène Briand-Renaudet, French CAYACS, Les Aguerris association, France

2

Cured.

I looked up the definition for fun, sometimes multiple descriptions help you to think clearer.

Here were some of the answers:

• relieve (a person or animal) of the symptoms of a disease or condition
• eliminate (a disease or condition) with medical treatment
• restore to health, repair, make better

Another thought provoking one:

• Solve a problem

Maybe this is why doctors seem reticent to utter the word “cured”. Everyone likes to be the one who solves a problem but the reality is, it’s not always possible and we don’t like to be confronted with that. It hurts. Cured has a wider implication than simply a clear PET scan. It engages your word. Even though no-one ever knows exactly what tomorrow is made of and we like certitude.

Maybe it’s harder with children. “Remission”? What does that mean when you are a kid. Children understand victories, the 100m race, school exam achievements, the end of school and a holiday that awaits. You start something and it finishes. Simple. Cured and then maybe not? Who wants to be the one potentially bursting the balloon of celebrations if cured takes a cruel turn for the worst. It’s not fair. It’s not dependent on your effort or skill. I’ve lost friends, fighters. The opposite? Never having the thrill of those balloons. The turning of a chapter, a defined closure is a good thing, maybe even necessary in a way; in whatever shape that takes. Sometimes short lived but time to have balloons anyway and celebrate, unite against disease together. Ring a victory bell and everyone hears it resounding. Time stops.

I remember, “the results are clear, showing no sign of cancer”. Cured was kept in reserve, for the doctor time would tell, “we’ll wait and see”, hold your breath. I don’t remember a definitive “finishing line”, meetings with doctors just got more spaced in time and fizzled out from memory. I remember celebratory lunches on the way home though and the elated expectancy of life going back to normal.

The last definition of cured made me chuckle, I have British humour.

Cure – to preserve (meat, fish, tobacco, or an animal skin) by salting, drying, or smoking.

In one sense I often feel like this definition applies to long term care after the cure. Preserve us, pickle us, to keep our best before date to the maximum. One pill for this, one for another, physiotherapy. Salt to keep me upright. Maximise everything’s function. Stay “pickled” with the longest shelf life. Then, I sit snuggled in my husband’s arms watching a sunset, time with a friend laughing and then do I truly feel, cured.

Natasha B., English CAYACS, living in France

3

After cancer, there is one word everyone seems to be waiting for: “cured”. That moment when someone tells you it is over.

I never heard that word.

After my second childhood cancer, I was followed for nine years in the same department. Nine years of check-ups, without anyone ever saying, “That’s it, you’re cured.” Then one day, they started arranging my transfer to adult care. Because I had grown up—not because someone had told me it was over.

I went to one appointment, and then I stopped. The transition from childhood to adult care can be a moment when the thread of follow-up is lost. That is what happened to me.

The good news is that the thread can be picked up again. In some hospitals where you were treated, it is possible to reconnect with follow-up care, even years later.

For a long time, I felt as though I had missed something. Then I realised I was not alone. Many people, especially those who had cancer as children, have never heard that word.

So, “cured”, “in remission”? I still don’t know which word fits me. But the absence of a word was not an oversight. It was a sign that someone was still looking out for me.

Laura Bathilde, French CAYACS, Les Aguerris association, France

4

I became obsessed with the word “cured”. The fact that my doctor said I was cured was more important than anything else that happened to me, as if all the side effects suddenly ceased to matter if I was clinically cured.

I was never told that I was cured, or even that I was in remission, because my test results after the bone marrow transplant always showed some residual activity, and since it remained stable, they said it was inflammation. But I never had that day when they told me I was cancer-free, nor have I “ringed the bell” like some people sometimes do.

Over time, I’ve come to accept that I’ll never be cured, and although I would have liked to experience that moment of happiness, it gives me peace of mind to know that I’m keeping my feet on the ground and have a professional team looking out for me.

Yaiza – Spanish CAYACS

5

There is a sentence I have heard and said on both sides of the desk: “You are cured.” As a patient, it sounded like a promise. As a doctor, I know how imprecise it is.

Being cured means leaving behind a diagnosis whose traces remain. Fatigue that no one sees. Lab values that tell more of a story than the person across the waiting room would guess. An attentiveness to one’s own body that never quite fades. Late effects are what rarely appears in the discharge letter and what there is often too little time for in the consultation. They are real, even when they remain invisible, and precisely because they are invisible, they demand an effort that others fail to recognise.

It took me a long time to understand that “cured” and “affected” are not opposites. Both can be true at once. Holding this ambivalence, rather than resolving it, is perhaps the real work of survivorship.

Today I sit on the other side. I treat children and young people with cancer, and I research late effects after leukaemia. The double perspective is not an advantage in the conventional sense. It does not shield me from blind spots, nor does it make me a better doctor. But it makes me attentive to what lies between the lines of a history. When a young adult says he is “basically healthy,” I hear the word “basically.” When a mother says her child is “completely back to normal,” I know that mother and child often live in two different versions of that sentence.

What I wish for, as a doctor and as a survivor, is a medicine that does not wait to look closely until something is measurably pathological. A medicine that takes the lived experience seriously without pathologising it. One that chooses words that accompany rather than dismiss. Remission is a medical status. Healing is something that takes much longer and does not appear in any letter.

The two voices I carry do not contradict each other. They complement one another. The patient reminds the doctor of what lies behind the findings. The doctor gives the patient tools to make sense of what was lived. Together, they have brought me to the conviction that survivorship care cannot be an appendix to acute medicine. It must be a field of its own, with its own knowledge, its own language, and its own attention.

Dr. Eva-Maria Wild, Pediatrician in specialty training in Pediatric Oncology, University Hospital Erlangen; Survivor

6

For many survivors, hearing or reading the word “cured” is much more than receiving medical information. It can be a deeply emotional moment—a moment when years of treatment, uncertainty and fear are finally acknowledged. For some, it brings relief and a sense of closure. For others, it marks the beginning of a new chapter rather than the end of the story.

As a survivorship doctor, I think it is important that we do not make survivors choose between being “cured” and continuing to need care. Being cured of cancer does not necessarily mean that every consequence of the disease or its treatment has disappeared. Some survivors live with physical, cognitive or emotional late effects, while others may need long-term follow-up to monitor their health.

Long-term follow-up does not mean that we expect the cancer to return. It is another form of care: understanding what treatment someone received, identifying health problems that may occur later, helping to prevent or manage them when possible, and supporting survivors in taking care of their health throughout life.

Different healthcare professionals may use different words—“cured”, “in remission” or “no evidence of disease”—depending on the cancer and the level of certainty medicine can offer. But perhaps the most important question is not only which word we use, but what that word means to the person hearing it.

For me, being cured and continuing to need care are not contradictory. Cure can describe what has happened to the cancer; survivorship care is about helping the person live as well as possible afterwards.

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

7

The word ‘cured’ contains a paradox. It can signify the end of a threat, the long-awaited realisation that life is no longer centred on the illness. But it can also raise a question: what becomes of someone who has survived cancer once the illness is no longer present?

From a psychological perspective, being cured does not necessarily mean becoming the person you were before the illness. Certain experiences leave their mark, not as signs of failure or fragility, but as elements that form part of our history. The body may be cured, whilst memories, anxieties, questions about the future or one’s relationship with oneself may continue to evolve.

Perhaps this is what makes the word ‘cured’ so powerful: it does not merely describe a medical condition; it also helps to shape one’s identity. Hearing ‘you are cured’ can bring a long-awaited chapter to a close, but it can also create the feeling that one must now turn the page completely, as if nothing had happened. Yet surviving cancer is not about erasing the past. Rather, it is about finding a way to come to terms with it.

From an ethical perspective, the issue is perhaps not just about choosing the ‘right’ word, but about recognising that words have an impact. A medical term can become an important personal milestone, sometimes a source of relief, sometimes a source of confusion. The meaning of the word ‘cured’ cannot be separated from the person receiving it, their history, their fears and their hopes.

Perhaps the key is not to pit recovery against the need for care. A person may be recovered and still need support. They may be considered recovered whilst still bearing the scars of what they have been through. Medicine treats the illness, whilst care supports the person who continues to live with the legacy of what has happened to them.

Louise Hinckel – psychologist – LTFU department, CHU Angers , France

8

The experiences shared here show that the word “cured” carries not only a medical but also a psychological meaning. Hearing or reading the word cured can bring a sense of closure and mark an important transition from treatment to life after cancer.

At the same time, uncertainty may remain, and some survivors continue to live with late effects. Adjusting to life after childhood cancer is not a single moment but a process. Once treatment has ended and there are no signs of cancer, there is often more space to process what you have been through and gradually adapt to this new phase. Some parts of this process may be invisible to others, such as lingering fatigue, worries about your health, or changes in how you see yourself and your future.

If this transition brings questions or mixed emotions, you do not have to navigate them alone. Talking with your healthcare team can help you better understand what to expect in the years ahead, address any concerns you may have, and identify the support that may help you along the way.

Dr Anne Maas, Researcher in psychosocial aspects of childhood, adolescent, and young adult cancer survivorship. Faculty of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland

9

The experiences shared here show why the word “cured” can mean so much to survivors. Unfortunately, we pediatric hemato-oncologists are not so confident in using the phrase “you are cured” but we usually say that “now your cancer treatment is over and there are no signs of cancer anymore”. This is mostly because we do not have any clear definitions on “cure after cancer”. Usually, a patient can be considered cured of childhood cancer when the disease has not recurred during a sufficiently long follow-up period, and the risk of relapse is practically very low.

A commonly used benchmark is five years after the completion of treatment without signs of disease. This is based on the observation that, in many cancers, the risk of recurrence has significantly decreased by that time. However, five years does not automatically mean complete certainty of cure. This is mostly because different types of cancer carry different risks of recurrence: in leukaemias and many solid tumors, the risk decreases rapidly during the first years but e.g. in some braintumors, recurrence may occur even later.

For this reason, patients are often followed up for a long time, sometimes even into adulthood.

We must keep in mind that cure is more than the absence of disease. In practice, a patient can be considered cured when: there are no signs of active cancer, the risk of recurrence is very low, and functional ability and everyday life are as normal as possible. In addition, the following aspects are considered: possible long-term effects of treatment, psychological recovery, and return to normal life (school, social relationships).

In summary, a patient can generally be considered cured after several years—often at least five—without recurrence and when the medical risk has become very low. However, the final assessment is always individual and depends on the type of cancer as well as the patient’s overall situation.

Päivi Lähteenmäki – HCP Finland

10

When I look back over my long career as a pediatric oncologist, I realize that I have rarely used the word cured. It is not because I lack hope. Rather, it is because I have learned that cancer does not always follow the rules we would like it to.

Indeed, for most childhood cancers, the likelihood of relapse becomes very small after several years, but for some diseases, recurrence can occur much later than expected. And even when the cancer never returns, many survivors experience late effects of the disease or its treatment. In that sense, the cancer may be gone, but its impact on a person’s life may remain.

At the same time, I know that words matter. For many survivors, hearing the words you are cured means much more than receiving medical information. It can mark the end of fear, the beginning of new plans, and the courage to imagine a future no longer defined by cancer. My careful choice of words should never take away the realistic hope that every survivor deserves.

The challenge, therefore, is to balance honesty with reassurance. If we use the word cured too easily, we risk making a promise that medicine cannot fully guarantee. Should the disease return, those words may become an additional source of pain, confusion, or loss of trust. On the other hand, if we avoid every positive word because we fear uncertainty, we may unintentionally leave survivors feeling that they can never truly move forward.

Perhaps the most important lesson is that no single word fits every person. Some survivors long to hear the word cured; others prefer an open conversation about what is known and what remains uncertain. Our responsibility is not only to choose the right medical terminology but also to understand what each young person needs to hear and how they interpret our words.

Whether or not I use the word cured, I always want each of my patients to know one thing: reaching the end of treatment and living free of cancer is an extraordinary milestone that deserves to be celebrated. Long-term follow-up is not a sign that we doubt their recovery; it is an essential part of survivorship care, helping survivors stay as healthy as possible, and supporting them as they build long, healthy, and fulfilling lives beyond cancer.

Jelena Roganovic. Pediatric oncologist, Croatia

 11

To declare a survivor “cured” of cancer in accordance with the applicable criteria – it is of utmost importance for the patient, the individual and also his/her family. It is discussed in detail under the guidelines of the Erice Statement and its revised form, which have been translated into several languages highlighting the importance of this question.

To be declared free of the original cancer regardless of any longstanding disabilities or side effects of treatments can provide great help to step forward psychologically and facilitate social reintegration. For many survivors it can also provide relief from emotional burden, stigma and possible freedom from financial and/or social discrimination, although these aspects can vary greatly from region to region. The right and formal status of being cured supports legal frameworks like the “right to be forgotten,” protecting individuals from ongoing discrimination.

To become declared CURED marks a significant milestone in the course of follow-up care—one that is eagerly awaited not only by the patient and the family involved, but which surely brings a sense of great relief also to the members of the health care team.

ZsuZsanna Jakab, Pediatrician, Hungary

12

The reflections shared on the word cured from multiple perspectives capture the complexities of modern cancer care.

Through my research on clinical communication in cancer care, it has often struck me how cancer and survivorship care challenge both our understanding of health and disease and our preference for a “black and white” world, where (ideally) everything falls neatly into one of two categories: Acute sick – healthy, cured or not cured. For me, cancer survivorship represents the space in between. Perhaps cancer-free, or not a patient with cancer anymore, but not necessarily “healthy” either. The lack of precise terms or words that capture this complexity is evident in many doctor-patient conversations.

Our language defines our realities; our words shape how we think about the world and about ourselves.

Thus, knowing what “cured” means in medical or statistical terms (or does not mean) and the uncertainty attached to it, is not the same as appreciating what “cured” means for all involved and the emotions and values attached to it. Being curious of the perspectives of “the other” allows us to create common understanding, shared realities – and doctors to tailor their use of words, their care, to the psychological and existential needs of each of their patients.

Hanne C. Lie. Professor in Behavioural Medicine, University of Oslo, Norway

13

What does “cured” mean? In French, it’s a difficult word to translate. It can mean either “treated” or “cured,” which are two completely different words.

In the specific context of pediatric cancer, these words have entirely different meanings.

To be “treated” means having received all possible and appropriate therapeutic treatments—and that they were effective. Being “treated” means looking back at the past, not toward the future.

To be “cured” is to look forward to a future that we hope will be definitively better, and to close the door on a past that we sometimes wish to forget.

Yet the patients we meet on their post-cancer journeys tell us about their struggles to move beyond this past that remains suspended, like a moment that is at once so real, etched into the body and mind, and yet so unreal, like a sometimes staggering and often indescribable interlude.

Can one ever truly recover from what cancer put one through as a child?

In nursing, “cure” refers to therapeutic treatment and is often used alongside or even in contrast to “care”, which involves providing comfort and support. When “cure” is no longer an option, “care” takes its place, either because “cure” can no longer help or because the “cure” has been completed. Then comes the time for “care.” Taking care of oneself, of that unique history of childhood cancer, to shape the adult one will become.

“Cure” and “care” represent the gap between medical science and nursing; between the goal of curing and that of providing care. Of course, doctors care for the child, and nurses contribute to the child’s recovery. Fortunately.

Nevertheless, the sometimes-stark juxtaposition of these two terms reflects differing conceptions of the care profession. Our patients navigate between “cure” and “care”, sometimes with a clear direction, at other times more blindly. And the two are compatible. What does “cured” mean? Ultimately, every patient has their own definition. For some, it’s turning the page and a future that seeks to return to a predictable path. For others, it’s having been treated, yet facing an uncertain future filled with invisible detours. This uncertainty holds the seeds of all possibilities, and that is what makes it so precious.

My job as a pediatric nurse and manager of a pediatric oncology unit is to ensure that everyone, patients, families, and health caregivers, feels comforted and well cared for amid the turmoil of cancer. And to ensure that everyone has the right to their own personal definition of what it means to be “cured”.

So, let’s leave it to our young patients, as they grow up, to define for themselves what “cured” means.

Sophie Laroche. Senior pediatric nurse in oncology unit, CHU Caen Normandie, France