Children and Adolescents with Cancer Have Unique Needs

young female cancer patient using laptop in bed

Cancer that affects young children and adolescents is different from cancer that affects adults. Some cancer types are more likely to show up in kids, but even when kids have a cancer type that adults get too, it is often treated differently. Children and adolescents also have unique emotional needs that must be taken into consideration, depending on their stage of life.

Childhood cancer is often the result of DNA changes in cells that take place very early in life, sometimes even before birth. Most adult cancers, in contrast, are linked to lifestyle-related risk factors or other environmental risk factors that lead to DNA damage over time. As children age, they are exposed to more environmental factors that can cause cancer. Cancers in adolescents – those between the ages of 15 and 19 – are a mix of the types of cancer that develop in children and adults.

Cancer types

The most common childhood cancer is leukemia (mostly acute lymphocytic leukemia [ALL] and acute myeloid leukemia [AML]), which starts in the bone marrow or blood. Leukemia may cause bone and joint pain, fatigue, weakness, pale skin, bleeding or bruising, fever, weight loss, and other symptoms. Other cancer types that can occur in children include:

Children can also develop other types of cancer. Rarely, these can include cancers that are much more common in adults.

Other signs and symptoms of cancer in children include an unusual lump or swelling, an ongoing pain in one area of the body, limping, frequent headaches (often with vomiting), and sudden eye or vision changes.

The most common cancers in adolescents are:

Signs of symptoms of cancer in adolescents may include:

  • An unusual lump or swelling in the neck, belly, testicle, or elsewhere
  • Unexplained tiredness and loss of energy
  • Easy bruising
  • Abnormal bleeding
  • Ongoing pain in one part of the body
  • Unexplained fever or illness that doesn’t go away
  • Frequent headaches, often with vomiting
  • Sudden eye or vision changes
  • Loss of appetite or unplanned weight loss
  • A new mole or other spot on the skin, or one that changes in size, shape, or color

Many of these symptoms are much more likely to be caused by something other than cancer. Still, if your child or adolescent has any of these symptoms – especially if they don’t go away or they get worse – take them to see a doctor.

When young children have cancer

An estimated 10,380 children under age 15 in the US will be diagnosed with cancer in 2015. Most of them will be treated at a specialized center by a team of experts in pediatric oncology. These centers also have psychologists, social workers, nutritionists, therapists, educators, and other specialists who can support the entire family.

Children’s cancers tend to respond better than adult cancers to treatments such as chemotherapy, and more than 80% of children with cancer now survive 5 years or more. However, responses to treatment and survival rates differ depending on the type of cancer and other factors. And cancer treatments can cause long-term side effects, so children who have had cancer will need careful follow-up for the rest of their lives.

Coping with cancer diagnosis and treatment is different for every child, but can sometimes be predicted based on the child’s age. Infants and toddlers are often afraid of being separated from their parents and of painful medical procedures. Those old enough to be in school may be upset by the disruption of their routine, and miss their friends.

Parents can help by talking to their children in age-appropriate ways about what is happening and repeating those explanations often. When you are with your child, soothe and comfort them by cuddling, hugging, rocking, singing, and playing. If you need to be separated, leave a favorite blanket or toy with your child. Record lullabies, stories, and messages so your child can hear your voice. Brothers and sisters also need comforting. Talk with nurses, social workers, and other parents of children with cancer about your emotions and ways to cope.

Adolescents face additional cancer challenges

Challenges faced by adolescents (ages 15 – 19) diagnosed with cancer can complicate their treatment. Often, cancer in this age group is not found until later than it is for either younger or older people, which can make it harder to treat. Adolescents may wait longer to report symptoms because health concerns are not a priority for them, and when they do report symptoms, doctors often don’t suspect cancer at first. Symptoms like pain or feeling tired are more often due to causes other than cancer. About 5,000 adolescents are diagnosed with cancer each year in the US. Adolescents with cancer are usually treated by pediatric cancer specialists if they have a type of cancer more common in children, and by adult cancer specialists if they have a type more common in adults. Either way, they are unlikely to run into other patients their own age, and often feel out of place.

Their age can also create additional complications. It’s a time in life when a lot of stressful changes are already occurring. They may resent missing out on school, social events, and spending time with friends. Some adolescents may skip appointments because they place a higher priority on other things going on in their lives, misjudge the seriousness of the cancer, or resent having to deal with it.

Archie Bleyer, MD, Clinical Research Professor, Knight Cancer Institute, Oregon Health and Science University is an expert in cancer among adolescents and young adults. He explains: “First off, being an adolescent is hard enough. For any healthy adolescent, that is the age of turmoil. Issues of race and ethnicity, drug use, sexual development, becoming educated, the challenge of finishing high school and getting accepted to college – it is the hardest time in life for almost everybody. And, then imagine adding a potentially fatal disease to that set of challenges. These adolescents are already challenged and you add the issue of cancer and the stigma it creates, as well as the potential loss of life, at a time when everything is compressed – you graduate, go on to college, etc., in such a few years a time – cancer is something that completely puts all of that at risk.”

In addition, adolescents diagnosed with cancer face long-term side effects depending on the type of treatment they receive. Professionals advise parents to include adolescents in all discussions about diagnosis and treatment planning, encourage them to ask questions, and reassure them repeatedly that they did not cause the cancer. Online and in-person support groups are available and provide a way for young people with cancer to connect with others who are facing a similar situation.

Future challenges

According to Bleyer, children under 15 and adults over 40 have benefitted dramatically from medical advances during the 45 years he’s been an oncologist, but progress has been slower for adolescents and young adults, those ages 15 to 39. “It is not that there hasn’t been progress,” said Bleyer, “but in comparison to children and to older adults, this group lags behind.”

They also face financial challenges, said Bleyer. “Fortunately, now with the Affordable Care Act, all children up to age 26 can stay on their parents’ health insurance – so now they are much more hopeful of being able to get the best care that they need,” he said. “That has really helped with that challenge. Nonetheless, the challenges of finding a way to get education and become employed gets so much harder with cancer.”

The key to future progress, says Bleyer, is through clinical trials, which are an important way for doctors to develop new cancer treatments. Bleyer says cancer in children, adolescents, and young adults are so different that each age group needs its own research effort. He says adolescents and young adults have had low clinical trial participation levels, but that’s changing. “There has been a doubling or even tripling in the number of adolescents being put on clinical trials for cancers, which is the real hope for the future because their cancers are different and they need different strategies and clinical approaches.”

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