Information is Power

We’re building an online education resource so you can learn exactly what you need to become a self-advocate.

Childhood Cancer Survivorship 101

Survivorship Basics

There are many different types of childhood cancer

Childhood cancer is not one disease, but many. In Canada, the most common types of cancer diagnosed in children age 0-14 years are leukemia, brain and central nervous tumours and lymphoma, whereas adolescents and young adults age 15-29 years are more often diagnosed with thyroid, testicular, skin cancer and lymphoma.

Childhood cancer is different than adult cancer

Scientific research has helped us understand that childhood cancers are not like those seen in adults. What is true of cancer in general, however, is that tumour cells break the rules obeyed by normal cells that dictate when to divide or die.

The cause of childhood cancer is largely unknown

Many adult cancers can be linked to certain lifestyle choices or environmental exposures, but this is generally not true of childhood cancers which happen mostly without any known cause. This can be frustrating for parents, children and health care professionals. Only in a very small number of cases of childhood cancer is there a family history related to development of the disease.

Childhood cancer survivors are different than survivors of adult cancers

Despite receiving a similar standard of care often consisting of surgery, chemo and/or radiation, children treated for cancer face different long-term challenges compared to adults. Developing organs are highly sensitive to the damaging effects of chemo and radiation which means that while these treatments can be curative, healthy developing cells are often damaged in the process of cancer therapy.

Survivors of childhood cancer deal with many long-term effects

As a result of damage to healthy organs, there are many “late effects” of cancer therapy that childhood cancer survivors may experience. Some of these may not cause symptoms until many years after treatment ends. These long-term side-effects can impact physical, mental, cognitive and emotional (psycho-social) health.

Regular check-ups by specialized survivor care teams are important

Prevention and early detection of treatment-related side-effects through regular check-ups is the best way to manage the challenges faced by survivors. The goal of long-term care experts is to create an individualized care and support strategy for each survivor as early as possible. Specialized long-term care teams organized by AfterCare clinics will look different for each survivor, but often include health care providers like doctors, specialists, nurses, psychologists and social workers.

Questions or concerns?

The area of childhood cancer survivor care is developing rapidly, so not all doctors are up to date with care recommendations. If you have questions or concerns about your health as a childhood cancer survivor, it is important to ask your family doctor for a referral to an AfterCare clinic which can provide you with personalized care and support. Our most up to date list of AfterCare Centres in Canada can be found here.

Childhood Cancer Survivorship 102

Childhood Cancer Treatments & Their Effects

Standard childhood cancer treatments

Surgery, chemotherapy and radiation are standard therapies used to treat a variety of childhood cancers,c either alone or in combination. Despite major differences related to when these treatments are implemented and how they are performed, they all pose some risk to healthy, non-cancerous cells. Healthcare teams are responsible for informing patients and their families of this risk and weighing the benefits of treatment and foreseeable short- and long-term effects.

Surgery

Surgery is often performed on solid tumors in parts of the body or brain that are safely accessible with minimal risk of damage to healthy tissues. Data has shown that the extent of surgical removal positively correlates with longer progression-free survival. Having said that, safe total surgical resection of the tumor is not always possible and in such cases, patients may also receive several rounds of chemotherapy and/or radiation in an attempt to kill the remaining tumor cells.

Chemotherapy

There are many chemotherapeutic agents approved for the treatment of childhood cancers. Healthcare providers select the type of chemotherapy based on the specific type of cancer. Chemotherapeutic agents are usually administered by oral (pill or capsule) or intravenous delivery methods.

Radiation

Unlike chemotherapy, radiation is targeted to a particular area of the body. Similarly, however, it can cause damage to both healthy and cancerous cells. Decades ago, radiation was used to treat all types of cancer. Today, radiation use is more precise so as to limit the exposure of healthy tissues and long-term side effects in children. We now know that chemotherapy without radiation is sometimes best (to treat blood cancers, for example) or that radiation can still be effective at lower doses when combined with chemotherapy.

Long-Term Side Effects Are Common

Life after childhood cancer can be impacted by both the disease and the treatments used to cure it. Thankfully lots of work has been done to compile the data and experience of thousands of childhood cancer survivors for the benefit of survivors worldwide, as well as their families and healthcare providers. Late effects of cancer and cancer therapy can occur months or years after treatment and will be experienced differently by every survivor. The type of late effect(s) will depend on the type of cancer and treatment(s) received. Late effects can impact the physical and/or psychosocial wellbeing of a survivor.

Physical side–effects: organ damage, impaired function , secondary disease and cancers, and reduced fertility

Psychosocial side-effects: cognition, mental health, sexuality/relationships

Self-care is very important. Healthy eating and living can greatly improve quality of life for survivors who are at increased risk of harm due to unhealthy habits like lack of exercise, prolonged sun exposure, smoking, drinking or drug use. Regular follow-up with a family physician and long-term care team is a crucial part of self-care and the early identification and management of any long term effects.

Childhood Cancer Survivorship 103

Care After Childhood Cancer

Check-ups are an important part of self-care

The Children’s Oncology Group has developed extensive guidelines for healthcare providers outlining long–term follow-up recommendations for childhood cancer survivors. These recommendations are based on our most current understanding of patient experiences and scientific research related to all types of childhood cancer. Importantly, long term follow-up is intended to be tailored to the individual needs of each survivor given their unique genetics, health outcomes after cancer, and psychosocial needs.

Yearly check-ups are recommended for all survivors to assess their psychosocial health (pain management, mental health, behavioural, educational, financial, social wellbeing). Specific follow-up screening tests are recommended for survivors depending on the type of cancer they had and how they were treated. These screening tests might involve annual blood work, heart/hearing/vision testing, dental or skin examinations. The goal is to monitor the known health risks to survivors and prevent long-term effects or chronic illness.

AfterCare Clinics: creating a system of support

An AfterCare clinic is a term used to describe a clinic that specializes in the unique health needs of survivors of childhood cancer after treatment. AfterCare clinics in Canada are organized at the provincial level but can include a wide range of healthcare professionals including physicians, nurse practitioners, dieticians, psychologists, social workers, vocational counsellors and financial counsellors. The AfterCare team is meant to provide continued support both medically and psychosocially for survivors into adolescence and adulthood. While it can be difficult to transition from a trusted oncology healthcare team during childhood cancer treatment to non-oncology specialists, it is an important step in living a full life as a teen and adult. Becoming our own health advocate is the best way to live a happier and healthier life that is both physically and emotionally fulfilling.