*Note: The following information has been adapted from my own research and was therefore not written by a medical professional. The terms 'child' or 'children' refer to individuals below the age of 21 years old.
Lesson 3: Side Effects of Treatment
1) Diagnosis & Early Treatment (1st 4-12 weeks)
Children with cancer and their parents have often identified the time just after diagnosis as the most stressful period in the course of their illness and treatment. The child may react to the diagnosis by expressing shock, denial, grief, anger and depression.
Physical Side Effects
- Pain (from intrusive procedures such as blood tests, lumbar punctures & venipunctures)
- Nausea & vomitting
- Lack of appetite
- Drowsiness
- Fatigue
- Cough and fever
- Hair loss
- Weight gain or loss due to medication
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| The creator of these dolls asked Mattel to manufacture Bald Barbies to be given to children with cancer. They did! Photo Credit: Beautiful and Bald Barbie |
Measures have been taken to reduce the procedural distress of children with cancer by introducing a topical analgesic ointment (which numbs the area where the child is pricked) and the surgical placement of central venous lines so that the child would not have to be pricked repeatedly.
Nevertheless, many children with cancer continue to show signs of procedural distress and pain. The pain and side effects of treatment experienced by the child can sometimes be more unpleasant than the cancer itself.
Psychological Effects
- Loss of control
- Fear of relapse and dying
- Lack of self-esteem as a result of the disfiguring physical changes (this affects an adolescent more than a younger child)
- Sibling problems (parents may pay more attention to the child who's sick and neglect the healthy sibling)
- Reliance on family members
- Feeling miserable and/or lethargic
- Feeling depressed and/or anxious
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| Photo credit: healthshire.com |
Social Effects
- Prolonged separation and isolation from family and friends due to their compromised immune system and frequent hospitalization
- Inability to play with friends due to reduced physical abilities
2) Middle of Treatment
As treatment continues, patients and their parents learn how to adapt to the various changes to life and routines. The anxiety faced by parents immediately after diagnosis is now less apparent as their child’s illness and treatment progresses. Children also learn how to cope with their illness and the treatment side effects. However, they are still burdened by treatment adherence and uncertainty of the future.
3) End of Treatment & Survival
The child continues to visit their oncologist at least once a year for follow up after their treatment is completed. He or she is considered to have survived cancer after they have been in remission for 3-5 years.
After surviving cancer, children have to adjust back to functioning like they did before they had cancer. They have to return to school and their primary caregiver may have to return to part- or full-time employment.
Even after treatment has ended, the child continues to face treatment late effects and other complications as a result of their illness and treatment.
Physical Late Effects
- Complications include organ dysfunction, growth delay, infertility, and second malignancies
- Changes in physical appearance such as amputation
- Child has to be conscious of their health choices (for example, smoking would have a disastrous effect on their already weakened immune system)
- Cognitive late effects such as problems with learning, attention and memory (especially for survivors of brain tumor)
- Neurocognitive impairment in survivors of brain tumors
- Fear of relapse
- Stress as a result of difficulties in adjusting back to school
- In Singapore, survivors of cancer are told to rejoin their peers in the same class and educational level that they are at even though they had missed the years of school in between.
- For example, if a girl was diagnosed with cancer at 8 years old, she'll stop her primary 2 schooling and start her treatment, which lasts for let's say 3 years. At the end of treatment, she'd be 11 years old and is thus expected to rejoin her peers at primary 5.
- As you can imagine, there are many problems with this arrangement. Although it may help the child to readjust to their lives before cancer, the years of school that they had missed may make it difficult for them to catch up to their peers in their school work.
- This may result in poorer academic performance and greater stress.
- Return to school may also be emotionally difficult for a school-age child or adolescent if there were significant changes in their physical appearance.
Effects of Cancer & Treatment on the Family
A diagnosis of cancer does not only affect the child but also their families.
Researchers have identified FOUR dimensions of impact on the family:
I. Financial Burden (extent to which illness changes the family’s economic status)
Families are burdened by the cost of treatment, loss of a parent’s income and other additional costs such as travel and meals at the hospital.
II. Social Impact (with others outside the immediate family)
III. Familial Impact (interaction within the immediate family)
All the members of the family are required to adapt to changes made to accommodate the increasing visits to the hospital, and frequent hospitalizations.
IV. Distress Experienced by Primary Caregiver
Parents often have to make adjustments to their work schedules to accommodate their sick child.
References:
Brown, R. T. (2006). Comprehensive handbook of childhood cancer and sickle cell disease: a biopsychosocial approach.
Derevensky, J. L., Tsanos, A. P. & Handman, M. (1998). Children with cancer: An examination of their coping and adaptive behavior. Journal of Psychosocial Oncology, 16(1), 37-61.
Dixon-Woods, M., Young, B. & Heney, D. (2005). Rethinking experiences of childhood cancer: A multidisciplinary approach to chronic childhood illness. Open University Press: Maidenhead.
Eiser, C. (2004). Children with Cancer: The Quality of Life.
Jackson, A. C., Enderby, K., O'Toole, M., Thomas, S. A., Ashley, D., Rosenfeld, J. V., Simos, E., Tokatlian, N. & Gedye, R. (2009). The role of social support in families coping with childhood brain tumor. Journal of Psychosocial Oncology, 27(1), 1-24.
Continue to >> Understanding Pediatric Cancer (4): Alleviating Negative Effects
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UPDATE: If you'll like to find out the results of my research, my complete thesis can be found on the NUS Scholar Bank (Part 1 & Part 2) =)
This post is part of my series on My Pediatric Cancer Research.
Read on to learn more about childhood cancer and its impact.
