Higher cure rates and fewer long-term effects from treatment are just two of the benefits teenagers and young adults up to age 21 receive when their cancer is treated at pediatric medical centers.
Mary Elizabeth’s Story
Mary Elizabeth Sierra-Lanham, 14, chatting with social worker Tonya Ranchigoda, says she appreciates staff members’ ability to relate to teens.
When Mary Elizabeth Sierra-Lanham had her eyes checked for nearsightedness, the routine exam showed that the optic nerve in her right eye was swollen. A string of visits to different specialists led to an MRI that finally explained the problem — a lump in her head was pressing against a major vein.
That was when mom Sally Lanham brought Mary Elizabeth to Children’s, where blood and bone marrow samples confirmed that her daughter had acute lymphoblastic leukemia (ALL), a type of cancer where malignant white blood cells or “lymphoblasts” are overproduced in the bone marrow and can spread into the bloodstream and vital organs. ALL accounts for approximately 25% of all childhood cancer.
Although Lanham didn’t know it when she switched Mary Elizabeth’s care to Children’s, her decision may have saved her daughter’s life: Teenagers and young adults have a much better chance of beating ALL — more than 25% better — when they receive pediatric cancer treatments rather than those intended for adults. Separate studies in North America, France, the Netherlands and Italy confirm these findings.
“We’ve learned from years of research that teenagers have far fewer relapses when their treatment is longer and more aggressive than the less rigorous treatment that middle-agers and seniors receive,” says pediatric oncologist Dr. Doug Hawkins.
“Yet, we still see medical oncologists out in the community treating 15-to-21-year-olds with less effective protocols that are sometimes decades out of date.”
At Children’s, teens and young adults with cancer not only benefit from cancer treatments developed specifically for their age group, they also thrive in an environment where teams of skilled providers focus on their long-term health concerns and the unique needs of their entire family.
Mary Elizabeth recalls the MRI technician who played music and chatted with her during her first procedure at Children’s — the visit that confirmed her cancer diagnosis.
“I had an MRI at another hospital and it was scary,” says Mary Elizabeth. “They left me alone and no one checked on me. At Children’s, the staff tell stories and we laugh. I’ll miss them when I’m done with treatment.”
Helping Teens Take Responsibility for Their Care
When a persistent cough and mysterious itchiness around the ankles sent 16-year-old Matthew Hale to his primary care physician, an X-ray revealed a tumor in the lymph nodes in his chest. Heeding the doctor’s advice, the Hales drove to Children’s that evening, where members of the cancer team met them in the Emergency Department and began a series of tests to pinpoint the nature of the tumor.
Matthew Hale, 16, describes his experience at Children’s as “awesome” thanks to the positive energy of nurses, their focus on pain-free treatment and their concern for his mom.
After a biopsy, clinical oncologist Dr. Blythe Thomson broke the news that the tumor in Matthew’s chest was Hodgkin lymphoma,a type of cancer that can develop anywhere in the body’s lymph system and can spread to the lungs, liver, bone or bone marrow.
Matthew was surprised when Thomson spoke directly to him rather than to his parents. But it’s a strategy Thomson and her colleagues use to build trust with teens and empower them to take responsibility for their care.
“I was in shock about the diagnosis, but glad my doctor talked to me with my parents just listening,” recalls Matthew. “I prefer that.”
The good news for teenagers with Hodgkin lymphoma is that cure rates are well over 90%. However, the treatment, which includes both chemotherapy and radiation, can leave teens with serious long-term effects, such as infertility, secondary cancers or damage to the heart, lungs and other organs that won’t appear until 10 to 30 years down the road.
“I’m always thinking about what life will be like when the kids get older and trying to find ways to make the treatments less toxic right now,” says Dr. Debra Friedman, an expert on Hodgkin lymphoma who is leading several national clinical trials aimed at improving cures while reducing the long-term effects for teens who survive the disease.
For risks that cannot be mitigated, the cancer team works with patients to plan around them. For instance, teenage boys are encouraged to go to a local sperm bank so they’ll have the option to father children later in life even if their treatment leaves them sterile. Most parents, says Friedman, strongly advocate the trip.