“The situation is overwhelming, especially when parents are first confronted with the news of the disease””
An interview with Eva Maria Tinner, paediatric oncologist at Bern University Hospital
Every year, approximately 350 children and adolescents are diagnosed with cancer in Switzerland. From a medical point of view, the challenge is not only to successfully fight the cancer, but also to minimise the risk of late effects for those affected. Eva Maria Tinner, MD, senior physician in paediatric oncology and haematology at Bern University Hospital, explains the challenges faced by the whole family – especially at the start of treatment.
Dr Tinner, when a child is diagnosed with cancer it is a massive shock not only for the child but also for the parents. How do you explain the terrible diagnosis to those affected?
In most cases, the patients themselves already suspect that there is something wrong with their body. And parents are also worried because their child has persistent complaints or is just not well. In such cases, the diagnosis can provide some clarity, even though it is of course terrible and initially pulls the rug out from under the family’s feet. First, I explain the results of the examination that led to the diagnosis and show the first steps of treatment so that the parents and the patient no longer feel so helpless. We doctors often start explaining things to people before we know the diagnosis in detail. For example, when a child has leukaemia but it is still unclear exactly what type it is. As soon as we have all the relevant information and know exactly what form the treatment will take, we talk to the parents, if at all possible in the presence of a psycho-oncologist and a nurse. We give an overview of the entire therapy, explain what exactly happens in the first phase, what side effects can occur and what to look out for. Naturally, these conversations are most difficult when the prospects are not good. In these cases we cannot offer cure as a hope, but instead have to talk about alleviating the symptoms and maintaining the quality of life from the very beginning.
What does a diagnosis like this mean for parents?
When a child is diagnosed as having cancer, it turns the family’s life upside down from one day to the next. The children and their parents spend months travelling between home and hospital and are exposed to extreme physical and psychological stress during this time. The intensive therapy phase usually lasts between six and twelve months – a time marked by planned and unplanned hospital stays and the constant fear that the child will not come through. For some types of cancer, treatment can take up to two years because adjuvant therapy is also required. This is the case, for example, with acute lymphoblastic leukaemia, which is one of the most common childhood cancers. Following the therapy, check-ups take place – initially at close intervals and, as things progress, at longer intervals, which can cause renewed anxiety for both the child and the parents. Parents who have a child with cancer are constantly worried, for example about infections at school that can be life-threatening for a child with cancer, including diseases that can be prevented by the recommended vaccinations, such as measles.
What does that mean for the everyday life of families affected?
A child diagnosed with cancer usually has to go to hospital for at least two weeks immediately after diagnosis. Normally, it is the case that a parent or a very close caregiver is always with the child. That is particularly important, particularly with very young children. When our patients are allowed to go home again after a few weeks, they must continue to receive very attentive care. Parents are then expected to become medical specialists within a very short space of time. For example, they have to inject medication under the skin and make very complex decisions or at least support them. During intense therapy phases, a child has to be hospitalised again, and that is also the case for chemotherapy or radiation. In addition, complications, such as infections, can occur because a child’s immune system is weakened. Then a child usually has to go to hospital for an indefinite period of time. These are just a few examples that illustrate why parents have to completely change their normal lives when their child has cancer. Often it is too much for them to spin all the individual plates, especially if both of them work and there are brothers and sisters who often get short shrift. Then a parent may be forced to reduce or give up work altogether, at least during the intensive phase of therapy. In addition, they sometimes feel guilty: “Why was it my child that fell ill, what did I do wrong?”. The belief or basic trust that everything will turn out all right is also deeply shaken.
So what advice do you give those affected?
The situation is overwhelming, especially when they are first confronted with the news of the disease. These are exceptional circumstances for both parents and patients. That is why it is important to take one step at a time and also accept help. To support parents and children in the best possible way, we work closely together with psycho-oncologists and social workers. Parents are often unsure about therapies and possible alternatives. After all, there is a lot of confusing information about cancer online. Here I would certainly advise that parents ask us doctors which sources of information are trustworthy and actually suit the child’s diagnosis. Parents’ health is also important and they should not be afraid to ask for help and time out for themselves, and for the two of them as a couple. Cancer treatment is a marathon, not a sprint, so parents have to make sure they don’t burn out completely so they can be there for their child long term. If relatives, friends or acquaintances want to help, it usually makes sense to share out simple tasks such as helping around the house, going on outings with siblings, cooking meals, etc. Often parents can cope pretty well in the intensive phase, but then fall into a psychological hole at the end of therapy. Again, I would advise those affected to seek help from professionals.
From your point of view as a doctor, where are there still gaps in care?
Financial relief is a key issue for parents. This ranges from loss of earnings, travel and parking costs to the financing of aids and medication in cases where health insurance or invalidity insurance only partially cover certain costs or do not cover them at all. At the moment, there are foundations that step in to help in cases of hardship, but the help available is nowhere near enough. We know that even 10 years after the end of treatment, parents whose child has had cancer are financially worse off than parents with a child of the same age without cancer. And for those children who have little chance of recovery, good, comprehensive palliative care is needed. Raising public awareness of the issue also remains important. There are still many people who think that cancer means premature death. Thanks to medical advances, we can now cure more than four out of five children. On the other hand, there are also people who don’t believe that we still can’t cure all brain tumours, for example. This is why there is still a lot of work to be done on how to actually explain the subject of childhood cancer.