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Stages of the illness and beyond

Stages of the illness and beyond



The cancer journey is unique for every individual within the family. Even for children that have the same diagnosis, there are a number of different pathways and responses that the child and their family can experience. Depending on the stage of cancer and other underlying conditions or issues, the symptoms and treatment may be quite different. The following information outlines the common stages and the consequent issues that may arise for a child with cancer and their family.

Diagnosis


The word ‘cancer’ is very prevalent in our society and although there are thousands of childhood cancer survivors, these individuals are not the images that are conjured up often when you hear the word cancer for the first time. Common reactions for parents include; shock, disbelief, feeling overwhelmed and/or confused. As such, often information may need to be repeated a number of times.

Typically in response to a crisis, mental health professionals would advise individuals to not make any life altering decisions. However, when a child is diagnosed with cancer, parents and children (depending on the age of the child) are faced with treatment decisions from the point of diagnosis, and often they do not have the luxury of waiting. Parents and children affected by the diagnosis (both the patient and/or siblings) may experience existential crises, including questioning the meaning of life and their values. This is particularly salient for the adolescent population, who are just starting to form their own values and identity. It is a time for families to adjust both practically and emotionally.

A further concern for parents is when, what, and possibly ‘if’ to tell their child about their diagnosis and upcoming treatment. Below are recommendations for mental health professionals:
  • It is important to assess the child’s understanding of the illness, and whether they have been given developmentally appropriate information
  • As part of your assessment and intervention, it may be important to give parents guidance about communicating with their child.

The information and websites below give some tips related to developmentally appropriate illness discussion that may guide and shape your own discussions with patients and also provide the basis for psycho-education with parents:

Intensive phase treatment


During this stage a child can be very sick and can often spend more time in hospital. This treatment phase is when possible issues related to the effects of hospitalisation may arise. For information related to the impact of hospitalisation on children and adolescents click here.

Maintenance


Families typically view this stage as a preliminary end point. They are usually looking forward to this stage as it generally means less time visiting the hospital. However families can also feel more disconnected from the hospital, due to reduced visits and appointments. If families experience these feelings of ambivalence surrounding this phase, it can be quite confusing, and it can take some time to adjust.

It is in this phase that external referrals to community services may be more prevalent, as families are spending less time engaged with hospital services and integrating back into their local community.

Coming off treatment


Families conceptualise this as the ‘end point’, and are expected to feel happy and be able to get their lives back to ‘normal’. However, this can be a stressful time, due to reduced contact with their treating team at the hospital, the perceived pressure of monitoring their child’s health, as well as the fear of relapse.

A clinical challenge can include helping patients and their families redefine what ‘normal’ means. Patients and their families may get stuck on the thought or perception that things have to go back to the way they were prior to diagnosis. It is important to help families recognise that this life changing event requires a new ‘normal’ to be developed. A time for families to acknowledge their strengths and weaknesses and to incorporate that knowledge moving forward.

It is common to see increased anxiety related to the fear that the cancer might come back and parents may become increasingly hypervigilant around their child’s health.

Relapse


This is the reoccurrence of the illness. The cancer may come back to the same place as the original (primary) tumour or to another place in the body. As expected this is a very difficult time, and common reactions include; a sense of uncertainty, stress, anxiety, fear, sadness, anger, guilt, and denial.

End-of-life care


Although childhood cancer has a good cure rate, a point may be reached in a child’s treatment when curative treatment is no longer possible. This phase is referred to as ‘end of life care’ or ‘palliative care’. It is helpful to reinforce that the aim of palliative care is a focus on life enhancement or improving the child’s remaining quality of life rather than on death.

This is another transition for families and obviously a very difficult phase of their child’s illness. During this time the family may engage with a new team of palliative care health professionals. This can be difficult for some families who may feel it signals a ‘giving up’ by their trusted health care team or even by themselves. Commonly families navigate this period with a combination of hopefulness that their child may still be cured and an acceptance of the reality of the forthcoming loss. Some common themes that mental health professionals may see at this time are:
  • Similar to the reaction experienced at diagnosis, anticipatory grief will most likely be present in parents of a palliative child. This may include anger responses and questioning previously held spiritual views
  • Significant stress on the family unit as a whole including the unique effect on specific relationships within the family
  • Stress on marital relationship and intimacy
  • The impact on siblings i.e. “magical thinking” in younger siblings- feeling that they are responsible for their siblings illness or anger due to feeling that their ill sibling is getting all the attention
  • Significant impact on other family members who may have played a predominant role in care-giving such as grandparents
  • The role of the mental health professional is to support the family and child providing psychosocial guidance as required. Particular attention must also be given to the family’s cultural, religious and spiritual needs
  • Families may also need support in decision making regarding end of life care such as whether this should occur in the hospital, at home or in a hospice
  • As with any new stage or transition, the child should be incorporated in their end of life care planning. Mental health professionals can be of assistance in assessing a child’s level of understanding of their illness progression
  • It is important that during this stage that children still have age appropriate needs met e.g. social interaction with peers, providing a sense of normalcy through the family’s ‘normal’ routine
  • Specific issues may arise for adolescent patients relating their capacity and competency to make decisions on their palliation.

Please see below website for more information:

Survivorship


Surviving cancer or “survivorship” can be defined in different ways. Two common definitions include:
  • Having no disease after the completion of treatment
  • The process of living with, through, and beyond cancer. By this definition, cancer survivorship begins at diagnosis. It includes people who continue to have treatment to either reduce risk of recurrence or to manage chronic disease.

There have been tremendous improvements in survival of children diagnosed with cancer, with the 5-year survival rate approaching 80%, resulting in a growing population of childhood cancer survivors. Use of cancer therapy at an early age can produce complications that may not become apparent until years later.

Please see websites below for more information on late effects:
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