Childhood cancer is a full family battle, says Lillie Brown, a 28-year-old pediatric cancer survivor from Missouri.
Brown was diagnosed with osteosarcoma, a type of bone cancer, at 13 years old. At 15, she was declared cancer-free after undergoing 11 months of chemotherapy and is now a mother of two, with another child on the way.
“Parts of cancer will live with me forever,” she says. “The good part of that is realizing what I’ve overcome, the community that surrounded me and knowing I could do hard things. But it’s not just cancer, chemo, remission — there’s more to it than that. A lot of it stays with you.”
Although childhood cancer rates are stabilizing, and cancer research and treatments march forward, it’s common for a childhood cancer diagnosis to put a strain on families both during and after treatment. If the hardship weighs heavily, you aren’t alone.
Common Types of Childhood Cancer
The types of cancers kids typically develop differ from those that are most common in adults. The most common types of childhood cancer include:
— Leukemia, which starts in blood-forming tissue like bone marrow. Leukemia is the most common type of childhood cancer, accounting for 1 in 3 cancer diagnoses. The most prevalent type of leukemia is acute lymphoblastic leukemia, or ALL for short.
— Brain tumors. Brain and central nervous system tumors account for about 16% of cancers in kids ages zero to 19, says Dr. Debra Friedman, E. Bronson Ingram Chair in pediatric oncology and division director of pediatric hematology/oncology at Monroe Carell Jr. Children’s Hospital at Vanderbilt in Nashville, Tennessee.
— Neuroblastoma, or cancer of the nerve cells. Neuroblastoma is the most common solid tumor outside of the brain, accounting for 5% of cancers in those ages zero to 19, adds Friedman, who is also the deputy director at Vanderbilt-Ingram Cancer Center. Solid tumors are abnormal masses of cells that don’t contain cysts or liquids.
— Lymphoma, which starts in the infection-fighting lymphatic system. About 12% of childhood cancers are lymphomas.
Some cancers are less common in children, but still much more common in children than adults. These cancers include:
— Wilms’ tumor, a rare type of kidney cancer
— Rhabdomyosarcoma, a soft tissue cancer
— Retinoblastoma, a cancer that starts in the retina of the eye
— Osteosarcoma and Ewing’s sarcoma, both of which are types of bone cancers
Causes of Childhood Cancer
Unlike in adults, lifestyle factors don’t seem to play a significant role in the development of cancer in children. Kids simply haven’t had enough years for lifestyle choices, such as poor diet or exposure to smoking, to have immediate impact, though these factors can increase cancer risk later in life.
Factors that may cause or increase a child’s risk for cancer include:
— Genetics. Inherited genetic mutations and gene changes may affect how rapidly cells grow, a key for cancer development.
— Medical conditions. For example, Down syndrome can raise a child’s risk of developing cancer.
— Developmental issues in utero. When certain cells don’t mature, cancers like Wilms’ tumor or retinoblastoma can form.
— Exposure to infection in early childhood. For example, exposure to Epstein-Barr virus — the same virus that causes most cases of mononucleosis — can contribute to certain cancers like Hodgkin lymphoma and Burkitt’s lymphoma.
— Radiation exposure, like from X-rays and other medical imaging. Children have a lower tolerance for radiation exposure and have a longer time to develop complications from exposure.
The American Cancer Society says, “If your child does develop cancer, it’s important to know that it’s extremely unlikely there is anything you or your child could have done to prevent it.”
[READ: Why Are Younger People Getting Cancer?]
Symptoms of Childhood Cancer
In adults, there are screening tests to detect certain cancers, such as breast cancer and colon cancer. But with kids, that’s not the case. Instead, it’s about taking action when symptoms might point to cancer — and of course, that’s not necessarily obvious.
In fact, symptoms are often similar to those that are due to more common illnesses and injuries. Still, some signs and symptoms may be linked to childhood cancers. While there’s no obvious tell, symptoms that come on suddenly and those that can’t be explained by any other cause, as well as illnesses that persist without a known reason, should be heeded.
Some possible symptoms to look for include:
— An abnormal lump
— Swelling, like in the joints or back
— Changes to the eye, such as white coloring behind the pupil
— Impaired vision
— Pain in one area of the body, such as bone or joint pain
— Headaches, often accompanied by vomiting in the morning
— Fever or another illness that persists
— Memory loss, confusion or other cognitive changes
— Speech problems
— Seizures
— Changes in personality or behavior
— Rapid unexplained weight loss
Signs and symptoms differ by individual childhood cancers. For example:
— Leukemia symptoms may include fever, bone pain, paleness, bruising, enlarged lymph nodes and an enlarged liver or spleen, Friedman says.
— Bone and soft tissue cancers might manifest as bone pain, lumps or soft tissue swelling.
— Lymphomas may cause enlarged lymph nodes.
— Brain tumors might give a child a headache, vomiting or balance changes, Friedman explains.
Experts stress that it’s best to talk with your child’s doctor about any concerns to ensure early detection and treatment in the less common cases where cancer is to blame.
[SEE: Questions to Ask Your Oncologist at Your First Cancer Appointment.]
Diagnosing Childhood Cancer
“Childhood cancer is diagnosed based on signs or symptoms of the cancer, and as such will differ from cancer to cancer significantly,” Friedman reiterates.
It also takes time to determine if what a child is experiencing is, in fact, cancer.
“Most children go back and forth to their primary care providers a number of times before getting diagnosed, because most of these symptoms are not specific to cancer and are usually not cancer,” Friedman says.
Childhood cancer is diagnosed by considering the following elements:
— A child’s medical history and family history
— A detailed physical exam
— Imaging like X-rays or MRIs
— A biopsy
— Blood tests, which are necessary to diagnose leukemia
— Bone scans, for cancers like osteosarcoma
When cancer is confirmed, a closer evaluation and additional testing may be done. This can range from blood tests to bone scans to provide more detail on the cancer, from type to stage — or how far it has spread. This will help guide treatment.
[Read: Where to Go for Cancer Treatment.]
Communicating a cancer diagnosis with children
When explaining a cancer diagnosis or prognosis to children, it’s important they receive a clear but simple explanation of the disease.
ACS urges parents and medical providers to explain to children that cancer is not contagious and is not the child’s fault.
Consider the age of the child when explaining cancer, but remain direct and honest. Brown says as a 13-year-old, her medical team avoided words like “tumor,” “chemotherapy” or “cancer.” They used “growth,” “strong medicine” and “sick,” respectively. She was ill-equipped for the invasive procedures ahead of her.
An employee at her school was the first person to use the word “cancer” when talking about her condition, rather than her parents or medical providers.
“I felt like I was the last person to know what was going on,” Brown recalls.
Childhood Cancer Prognosis
This year in the U.S., more than 9,000 children under the age of 15 are expected to be diagnosed with cancer, according to the ACS.
Fortunately, advances in care have dramatically improved cure rates here in the United States and in other developed high-income countries, so that most survive childhood cancer — and it never comes back.
“More than 80% of those children are going to be cured of their pediatric cancer,” says Dr. James Downing, president and CEO at St. Jude Children’s Research Hospital in Memphis, Tennessee. “So the outlook is very good.”
The most common for childhood cancer, ALL, for instance, has around a 98% remission rate.
Even with resilient kids and ever-advancing treatments, nearly 1 in 5 kids diagnosed with cancer succumb to the disease. There are also serious short- and long-term side effects from the invasive treatment protocols to keep in mind.
Treating Childhood Cancer
Treatment for childhood cancer differs based on the cancer type, as with adults. However, these are the mainstays of therapy for childhood cancer, which may be used in combination:
— Chemotherapy. Chemotherapy medications work by targeting and destroying rapidly dividing cancer cells. Chemotherapy also destroys healthy cells in the process, so chemotherapy has many side effects as a result, like hair loss. Children with cancer commonly receive chemotherapy through an IV. Children who have ALL, for example, may receive chemo for up to three years.
— Surgery. Surgery may be used to remove solid tumors, like a brain tumor.
— Radiation. Radiation is used to a lesser degree compared with adult cancer treatment.
— Laser or cryoablation, a process using cooled, hollow needles. This approach can destroy cancer cells in retinoblastoma, while retaining as much vision as possible.
— Immunotherapy and targeted molecular therapy. These are newer treatments that use the body’s immune system to attack cancer cells and target the genetic mutations driving the cancer — for example, enlisting the child’s immune system to fight cancer like non-Hodgkin lymphoma.
“High-risk pediatric patients can be candidates for the newer agents, such as immunotherapy or molecular targeted therapy, which have become available recently,” says Dr. Hiroto Inaba, director of the Pediatric Hematology Oncology Fellowship Program at St. Jude Children’s Research Hospital in Memphis.
As part of a more aggressive approach to treating childhood cancer, kids often are treated for a longer time.
“It’s very intensive, regimented therapy that is based on a patient’s risk of relapse,” Downing says.
However, kids’ bodies are equipped to handle treatment in a way adults aren’t.
“Children can tolerate very aggressive treatment that an adult or an older adult sometimes may not,” says Dr. Will Parsons, deputy director of Texas Children’s Cancer and Hematology Center in Houston. “They’re younger, generally healthier, stronger. They are much less frequently affected by disease that come with older age, like diabetes or heart disease.”
Complications of Childhood Cancer
Still, as well as pint-sized bodies may respond to some cancer therapies, treatment takes a serious toll. In addition to enduring a range of side effects — just as adults do — kids are vulnerable in another way: Treatment can impact their growth and development. That’s a trade-off clinicians and parents must consider in making difficult choices about treatment.
There may be long-term complications of certain childhood cancer treatments such as:
— Chemotherapy. During chemo, it’s common to have hair loss, nausea, fatigue and a host of other side effects. After chemotherapy, kids may have tooth decay, heart problems or issues with fertility later in life.
— Radiation. Depending on the dose, treating brain cancer with radiation can cause cognitive impairment, as well as interfere with the brain’s ability to produce growth hormones and stunt growth. Those kids require growth hormone supplementation. “If you give radiation to the spine, you can cause shortening of what’s called ‘sitting height,'” Friedman explains. “The vertebrae in the spine kind of collapse down a little bit on each other, and they don’t grow as well because they’ve been radiated.”
— Surgery. Some surgeries are minor, but major surgeries may require removal of an organ or large body part. Depending on the surgery, this can have lifelong effects.
Complications of treatment depend on the type and duration of the treatment. There may also be lasting effects from ancillary pieces of having cancer, including:
— Mental health struggles
— Disrupted education
— Decreased mobility due to tumor size or location
— Infections from central lines and ports
— Nerve pain or scarring from procedures, like biopsies
The Bottom Line
“Kids need support, not only during treatment, but that they need support after as well,” Brown says. “It isn’t just something that’s a one-and-done.”
Clinicians agree that the modern approach to treating pediatric cancer includes considering what life might look like after cancer is eradicated.
“There’s also an increasing focus on not only curing children, but curing them as safely or as gently as possible,” Parsons says. “So we’re always assessing and balancing how we can give the most effective treatment possible to give us the best chance to make the tumor go away and stay away.”
The ultimate goal is for kids to be able to grow into healthy adults who have put cancer behind them.
If you’re looking for a trustworthy children’s hospital — including for cancer treatments — check out the U.S. News & World Report Best Children’s Hospital rankings. U.S. News collected data from nearly 200 medical centers through a detailed survey that looks at measures such as patient safety, infection prevention and adequacy of nurse staffing. In addition, part of each hospital’s score is derived from surveys of more than 15,000 pediatric specialists who are asked where they would send the sickest children in their specialty.
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A Patient?s Guide to Childhood Cancer originally appeared on usnews.com
Update 09/25/24: This story was previously published at an earlier date and has been updated with new information.
