When a child expresses pain, it’s their body’s way of telling us something is not right.
“The public image of kids with cancer is not only bald heads, but that chemo makes kids nauseous/pukey. I felt uninformed as to the pain Tegan would experience throughout her treatment.” ~Jenn Lyster
by Dr. Kevin Weingarten
As Jenn alludes to above, cancer and pain are intertwined. Pain can be present at the time of a cancer diagnosis, during treatment and supportive care, and pain can continue to plague patients and families for a long time after. Pain is consistently ranked as one of the most common symptoms experienced by children with cancer. In fact it is experienced by the majority of children with cancer.
It may seem obvious that cancer itself can cause pain, but pain can also occur from the treatments aimed at curing the cancer, such as pain related to surgery, radiation effects, orthopedic procedures (amputation, prosthetics) and complications of bone marrow transplants such as graft vs host disease. It might catch some people by surprise to learn that chemotherapy may also cause pain.
Chemotherapy does not generally hurt when it’s given to the child, however it can have painful side effects. For example, some types of chemotherapy can affect the way nerves work, which causes a type of pain called “neuropathic” pain. This can create pain sensations such as burning, stinging or an “electric shock” type of pain.
“Tegan often said she had “sparkly” hands and feet, and her legs hurt all the time.” ~Jenn Lyster
Chemotherapy works by killing cancer cells, but it can also damage normal cells. Some normal cells that are affected are hair follicles, blood cells and the cells that line our gastro-intestinal tract. When this last group of cells are affected, it leads to a condition known as “mucositis” which can cause nausea as well as pain such as mouth sore pain.
“Tegan’s scalp to this day remains very sensitive after having lost her hair. The different types of pain can truly be long lasting.” ~Jenn Lyster
During the course of treatment and beyond, children undergo many tests and procedures – blood tests, lumbar punctures, bone marrow tests, IV needles and lines, etc. – many of which add to their burden of pain while undergoing treatment for cancer.
“Tegan was only 2.5 years old at diagnosis so her pain was often expressed through screams and tears, kicking and wiggling. She knew then what to do to try to escape the impending pain.” ~Jenn Lyster
From the suffering of the child and its toll on siblings and families, to its effects on sleep and quality of life, the impacts of a child in pain are wide ranging. These things are experienced at the time when pain is occurring, but there is also evidence that pain has long term effects on children as well. Maya, 26 year old childhood cancer survivor, expresses how the effects of pain altered her life in unexpected ways:
“Because of the long term effects of cancer I have undergone numerous procedures that have caused such pain as to require pain killers. I have been left unable to participate in life not only because of the pain, but also because the pain killers used to treat pain have an inebriating effect. As an adult I have reverted to a child without independence because of the debilitating effects of procedures to deal with the long term effects of cancer.”
- Most kids with cancer have pain AND find it distressing.
- The sources of pain related to cancer and its treatment are wide and varied.
- The impact of pain may be pervasive and long-lasting.
In this second blog of our #KidsCancerPain series, we took a look at the prevalence, sources, and impact of pain in children with cancer, as well as hearing true stories about childhood cancer pain. Stay tuned for subsequent posts in which we’ll explore the wealth of evidence-based knowledge we have accumulated in treating cancer related pain in children.
Kevin Weingarten trained at Sickkids for Paediatrics and Haematology/Oncology, before completing a fellowship in Paediatric Palliative care at Boston Children’s Hospital. He completed a masters of bioethics through the Joint Center for Bioethics at the University of Toronto in 2014. He currently splits his clinical time between Oncology and Palliative care and is the Program director for the palliative care fellowship at Sickkids.
Special thanks to: Jenn Lyster, Childhood Cancer Advocate and Mother to Tegan and Jessie, and Maya Stern, 26 year old long-term cancer survivor, for their comments.
Reference: Twycross, A, Parker, R., Williams A, & Gibson F. (2015, November). Cancer-Related Pain and Pain Management: Sources, Prevalence, and the Experiences of Children and Parents. Journal of Pediatric Oncology Nursing, 32(6):369-84. doi: 10.1177/1043454214563751.