Children with Cancer

The heartache is unbearable, the stress profound, but the survival statistics are good.1

Estimated read-time: 14 minutes

  1. Why do children get cancer?
  2. What is the survival rate for childhood cancer?
  3. How does childhood cancer impact a family?
  4. The long-term implications of surviving childhood cancer
  5. What to expect after a child has cancer
  6. When a child is terminally ill with cancer

Why do children get cancer?

Finding out that your child has cancer is a paralysing moment, which forces you to helplessly witness one of the cruellest realities of life being inflicted upon your innocent, undeserving child.

As a parent you feel responsible for their wellbeing and thoughts can immediately turn to why this has happened.

Although many major lifestyle risk factors for cancer are known in adults, for example; being obese, pollution, smoking or drinking too much, however these are not thought to be the same factors which lead to a child developing cancer.

In fact, the types of cancer children develop are quite different to the cancers found in adults. The eight most common childhood cancers are;

  • Leukaemia (a cancer of the bone marrow and blood)
  • Neuroblastoma (a cancer of the nerve cells originating in the foetus)
  • Brain and central nervous system tumours,
  • Retinoblastoma (cancer of the eye)
  • Hodgkin and non-Hodgkin Lymphoma (affecting the lymphatic system)
  • Rhabdomyosarcoma (most common type of soft tissue sarcoma)
  • Nephroblastoma (Wilms’ Tumour, a type of childhood kidney cancer) and
  • Bone cancer. 2

Despite all the research, the specific reasons why a child develops cancer are still largely unknown.

This is because childhood cancers are relatively rare with only 1% of all cancer incidences occurring in those under 19 years old3 and are therefore difficult to research.

From recent research it is known that some types of childhood cancers, for example neuroblastomas and some brain tumours have already started to occur in the embryo before birth and such changes to the cell during development are hypothesised as being due to random occurrences, by chance and not directly caused by any external factors.4,5

Some children are thought to be born with a genetic predisposition or have a medical condition such as Down’s syndrome which places them at a higher risk of developing cancer.6

Otherwise, the causes of a child developing cancer are thought to be potentially linked to the exposure to a combination of more than one of the following factors;

  • infections
  • radiation (from x-rays or CT scans)
  • previous cancer treatments
  • pesticides
  • second-hand smoke
  • household chemicals
  • air pollution
  • food preservatives.

The irony is that most of the children vulnerable to such risk factors don’t develop cancer, whilst a small number of children who have no obvious history of contact with known cancer promoters will suffer from cancer.7

why children get cancer

The fact remains that overall childhood cancers cannot be foreseen, prevented or screened for8 and there should therefore be no blame placed upon the parents by themselves or by others as there is nothing modern science knows that they could have done to avoid this distressing fate from occurring.

What is the survival rate for childhood cancer?

In the last sixty years many significant advancements have been made in the treatment of childhood cancers9 and many cancers which were previously fatal, such as acute lymphoblastic leukaemia (ALL), are now largely curable.

In fact, the five-year cure rate of childhood cancers has improved dramatically in this period of time jumping from 30% of children with cancer surviving over the long-term, to that figure currently sitting around an 80% cure rate.10

This success is striking when compared to the statistic of the long-term survivorship of adult cancers which is around 68% and this better response rate is put down to more aggressive treatment protocols being more easily tolerated by children.11

The long-term management of the consequences of suffering from cancer in their childhood has also improved, with more importance directed to the long-term support of their mental and physical wellbeing, along with fertility support and regular screening programs over the rest of their life.

The ongoing negative impact any lasting and late side effects of the cancer itself and its treatment has also improved as a direct consequence of reduced drug toxicities, meaning survivors often live with a better quality of life than they would have in the past.

Many childhood cancer survivors will now go on to live a normal life expectancy,12 although because all cancers are so individual, the outlook will depend upon the type, specific make up or ‘histology’ of the cancer along with its stage, location and aggressiveness and also the child’s age at diagnosis, race and sex.12

However, cancer is sadly still responsible for the deaths of many children and young people, more so than any other disease.14,15

Significantly, the overall incidences of cancer in children have never been higher16 and the steady increase is reported by the American Cancer Society to be progressing year on year.17

How does childhood cancer impact a family?

The strain caused by cancer affecting your child cannot be underestimated.

As a parent you will immediately feel an intense stress, which seeps into your body, mind and soul as the stark reality embeds into your consciousness.

This emotional strain will occur simultaneously whilst being crushed by the overbearing prospect of the day to day practicalities and challenges you have no option but to face, along with the devastating prospect of an uncertain future as cancer taps into your deepest fears.

The innate, in-built and overriding urge to protect your child will lead you to experience deep feelings of overwhelming helplessness and frustration when up against cancer.

The experience of this disease affecting someone so close to you as your child, means that it is normal to suffer the same levels of psychological distress as if the cancer was happening personally to you.

In fact, research shows that anxiety, depression, post-traumatic stress disorder and a void of emotional functioning are common in parents18 living through similar nightmares.

The emotional strain will also affect the daily lives of the whole family as the quality of life of every member is affected.

Siblings of the child with cancer often show signs of post-traumatic stress disorder as the negativity seeps through the family into affecting their social lives and their educational experiences.19

The strain which cancer can place upon a couple is also significant as the burden and stress puts pressure upon any vulnerabilities already existing within a relationship and can be the direct cause of difficulties occurring.

What can make the experience more intense is the fact that often mothers and fathers will not only react in different ways but will often take on distinct roles and will rely upon different coping strategies20 which can lead to miscommunication and alienation causing further difficulties to arise.

It is therefore critical that you ask for and receive the professional emotional support you need from your medical team and accept the love and practical help from those that surround you and who are offering it to you.

It is important to look after yourself as a primary caregiver as there will be many conflicting demands upon your time and energy.

It will take you to concertedly prioritize your own wellbeing so that you can be both mentally and physically well enough to help your child and your family get through this.

Treatment schedules can last for many months or even years often in specialist treatment centers far from home which can disturb family life and isolate not only the child but also the parents from supportive networks of extended family and friends.21

It is clear to see why researchers have highlighted the issue that those who have limited financial resources, big families, poor education or are from an ethnic minority are more likely to be negatively affected by their child having cancer.22

The long-term implications of surviving childhood cancer

The lasting, long-term implications for all those living in survivorship after suffering cancer in their childhood, adolescence or young adulthood are the same.

The legacy cancer leaves will be an ongoing challenge for these survivors to have to cope with for the rest of their lives.

Regaining normality and stability back into their lives may take time and be difficult both on a practical and emotional level.

Getting back into education may need to be a staged and slow process as young people regain their identities, try to fit into peer groups and resume the normal experiences of childhoods, adolescence or young adulthoods.

Adjusting after cancer

After cancer, the young person survivor may feel forever changed; their outlook and their attitude to life may always reflect the magnitude of their experience.

They may always be driven to be involved in the cancer world, continuing to be supported long into their survivorship and showing their gratitude and love of life by giving back their energy through fundraising or even following a career path which helps others facing cancer.

Equally and oppositely, they may choose to distance themselves from this episode in their life, preferring to draw a line and move on, refusing to be defined by cancer, focused and determined to get their lives back on track.

It is widely recognized that the lasting psychological impact cancer will inflict upon not only the young survivor themselves, but also their caregivers and inner support circle, will last long after treatment ends.23

Mental health support to help navigate the big issues and emotions provoked is essential for anyone going through cancer and for young people.

The need to seek support is only made greater by the timing of this trauma occurring at such an influential and vulnerable age when many significant life changes and developmental transitions are already happening.

Young survivors are not only vulnerable to anxiety and confidence issues24 but also psychological suffering and pain.25

The major issues a child after cancer will face (depending upon their age and stage of complete understanding) are;

  • having to deal with the legacy of having suffered hair loss
  • learning to live with difficult body image concerns due to visible scarring26
  • the uncertain future and
  • the potential impact upon their fertility.

Along with the lasting mental health issues which will young people will face, they will also be further challenged by the long-term complications of lasting side effects27 which may not be fully felt for years to come.

Depending upon the cancer type, stage and treatment, a range of lasting side effects are linked with childhood cancer and its treatment.

The long-term side effects a child after cancer may experience are; chronic fatigue, pain, incontinence, cognitive changes, heart failure and kidney failure amongst other side effect can be experienced for some time to come.

Continued contact with their medical team throughout their lives is to be expected, as these issues are managed and controlled over the long-term.

What to expect after a child has cancer

Two major concerns which can become significant sources of worry and distress for not only the patient but also their families are; firstly, the possible latent impact cancer can have upon future fertility and secondly, the potential for the cancer to return or another cancer to develop.

Infertility can be one of the long-term secondary losses with the biggest impact which a young survivor could suffer and is the cause of an additional major psychological distress which an older adult will not have to suffer.28

The risk of becoming permanently infertile will all depend upon several factors; the type and location of the cancer is important as treatment such as surgery and radiation may affect the reproductive organs and tissues.

The gender and age and genetics of the young person will also be of significance, along with the type, combination and dosage of any systemic treatment undertaken such as chemotherapy.29

Oncofertility

The Oncofertility specialists will attempt to follow up as many options for fertility preservation as possible, crucially before treatment starts.

Advancements in this field are continuously being made and available in the mainstream such as ovarian and testicular tissue freezing, so it is essential to check that you have access to the latest treatments.

These issues surrounding fertility need to be raised as close to diagnosis as possible so that your medical team can ensure that all necessary precautions are urgently carried out.30

It is important to be aware that it is still possible to have a healthy baby after cancer, especially if attempts to preserve fertility are successful.

Otherwise, there are many different routes to having a child with the help of assisted reproductive techniques (ARTs) for example by using; donor eggs or sperm, a surrogate or even through adoption.

As part of a young survivors’ continued care plan, there should always be access to specialized counselling.

This will provide the required support in the future when potentially the issue of infertility will become a more important factor in the young person’s life.31

The other major concern for young survivors of cancer is the real threat of a secondary cancer occurring at any point in the future32 affecting 17-19% of this population.33

The ongoing follow-up care received from the medical team over the long-term will continually assess the overall risk of any potential secondary cancer occurring through screening programs.

Therefore, it is essential to always be aware of and promptly report any bodily changes.

Also important is to understand better your hereditary disposition through genetic testing and to lead a healthy lifestyle based upon good nutrition, exercise and limiting exposure to known risk factors such as smoking, alcohol and obesity.

When a child is terminally ill with cancer

To go through seeing your own child get sick and face death is something that most of us have never even attempted to imagine, never mind truly considered was a possibility to witness in our life.

In the wake of a difficult diagnosis a parent in shock will often doubt the diagnosis, the prognosis and can distrust the medical team’s opinion that the outlook is terminal.

This resistance to accepting the prognosis is a typical response of self-protection as your immediate reaction is one of shock, numbness and of disbelief.

It will take time to align your natural hopes for your child’s life with the realization of your deepest parental fear playing out before your eyes.34

Extreme helplessness and sadness take over as coping mechanisms evolve, many of which can be the mind’s way of slowly coming to terms with the situation and processing the unfathomable.

You may find yourself, desperate for your child to live, trying the best you can to cope by consciously or sub-consciously; denying the seriousness of the situation, living in hope for a cure, frantically chasing the latest treatments or even wishing that you could take their place.

Day to day practicalities fall by the wayside as your entire focus is on your child and this is when the extended family circle, friends and charitable support will have to rally.

Terminal illness

At this time, you are not only having to manage your own expectations but also your child’s feelings and level of perception and understanding, as adult-like comprehension of death only emerges around the age of 10-12 years old. 35

You may also be battling in the background the continuation of seeking out and undertaking the latest treatments which could promise a potential cure under the most extreme high-risk stakes.36

Under intense stress, your levels of anxiety will negatively affect your child37 and your anger, fear and even grief will be felt as well.

It can be extremely isolating for a very sick child to witness their parents entering the phase of anticipatory grief.

This can be helped by somehow finding the strength to cut through the protective pretence of ‘it is going to be ok’ and communicate more clearly with the child by expressing your fears and listening to theirs.

Your medical team can support your experience of such extreme emotions and can help you navigate such surreal and devastating conversations.

However, how to approach these conversations and what to say to your child need to be personal and considered, as they will stay with you for the rest of your life.

Research on this subject has shown that whether you choose to openly talk to your child about death or not, most parents are secure with the decision they made.38

Often during these moments there is a period of intense physical contact39 of hugs and kisses as both the parent and child cling to and reaffirm their love for each other in a desperate attempt to find solace and comfort in the darkest of moments.

A very sick child will have complex needs40 which range include ongoing medical, social and spiritual support.41

For as long as it is possible a child should be able to experience their childhood.

As their parent, you can help your child with cancer enjoy quality of life;

  • through playing
  • enjoying the company and support of their siblings and friends
  • by continuing to involve them in activities and
  • maintaining their relationships with their parents and grandparents.

Dignity and ultimately a peaceful passing for anyone suffering from cancer will come from being surrounded by their loving families and supported in a positive environment, with no sense of being a burden to others.

Being able to be comforted and cared for both physically and spiritually, with access to privacy when required, are all crucial elements to being ideally cared for in the last phase of their life.42

If you think the information on this new website would be helpful to others, please like and share the word.

Recommend to others facing cancer, on support forums, social media, in person or by email. Thank you.

Terminal cancer child

References

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Bibliography

Adamson, P.C., MD (2015) ‘Improving the Outcome for Children With Cancer: Development of Targeted New Agents’, CA: A Cancer Journal for Clinicians, 65 (3), pp. 212–220. [Online]. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4629487/ (Accessed: 19th September 2019).

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