Surviving cancer is one thing — one absolutely incredible thing — but adjusting to life afterward, even when treatment has been entirely successful, can bring another whole set of challenges.
For young adult survivors of pediatric cancer, the aftermath can require a new approach to school and learning, family and social relationships, and the contours of independence. This is where City of Hope’s experienced psychological caregivers step in to augment the lifesaving work of its doctors and researchers.
In some instances, the very treatments that eradicate a cancer and heal a patient — radiation therapy, chemotherapy, transplants — have long-term cognitive side effects that require additional professional intervention. While these risks can be present with a variety of cancers, the highest risks hit those diagnosed with brain tumors and leukemia, when irradiation can result in neurotoxicity that affects cognitive function. This is especially true of younger patients whose brains are still developing.
“One of the most interesting areas to me is the connection between cognition and psychological functioning in young adults,” said Natalie C. Kelly, Ph.D., A.B.P.P.-C.N., a clinical neuropsychologist with a specialty in pediatric neuropsychology and an assistant clinical professor of psychology in City of Hope’s Department of Supportive Care Medicine. “This is a group, from age 18 into their 30s, that I really enjoy working with, particularly those that are pediatric cancer survivors who have gotten very misplaced in terms of their typical developmental trajectory.”
Inspired early on by Dr. Oliver Sacks (who spoke at her college), and her own physical therapist mother, Kelly claimed she has “always been interested in the brain.” On staff at City of Hope since 2011, Kelly works directly with both adult and child patients, focusing on cognitive functioning and “understanding the relationship between the brain and behavior.”
When a patient goes back to his or her life after treatment — attending high school or university, rejoining the work force — new, unexpected problems can arise. Difficulties with attention and focus, processing speed and executive function (decision-making, planning, organization, prioritizing tasks, emotional control and behavior regulation) can make learning and overall readjustment to daily living especially challenging.
“There are cognitive impairments that make those tasks that are already hard even harder,” said Kelly, who uses a clever musical analogy to explain the phenomenon to her patients: Core components of cognition such as language, memory and processing speed are like the members of the orchestra, and executive functioning is the conductor that tells the different aspects how and when to play together to meet any specific outcome. “In survivors, this is a very common area of difficulty,” she said, “so they don’t learn as effectively as they used to, or it takes longer to learn because of those executive issues.”
A patient struggling with these issues would be referred to a neuropsychologist like Kelly by the Childhood Cancer Survivorship Program at City of Hope, run by Saro H. Armenian, D.O., M.P.H., and Karla Wilson, N.P. Kelly then does a thorough assessment of cognitive functions and meets with the patient again to give detailed feedback about the nature of any detected disabilities and difficulties and how they relate to treatment. Using her documented evaluation, she then develops a detailed treatment plan with the patient, his family, social workers and occupational therapists, who then work to obtain support from the patient’s school or workplace to “integrate the findings into their everyday life.”
Understandably, survivors struggling to adapt to new impairments or additional hardship relating to pre-existing learning challenges also see an impact on their emotional and social lives, an area that City of Hope also supports with its highly trained staff of psychologists, therapists and psychiatrists, as needed. For adolescents and young adults, changes in executive functioning also affect “social competence,” or the ability to interact socially in a successful manner. “Also, just the broader issue of having been displaced from your social peer group, sometimes for a long period of time, and then trying to reintegrate into those circles is often very difficult,” added Kelly.
Combined with lingering pain, fatigue and any other physiological changes, patients are in need of a tremendous amount of support from City of Hope staff and family, who can help acquire qualified educational disability interventions and/or employment support such as vocational rehabilitation. To patients and their families feeling frustrated and helpless in the face of these hardships, this input from neuropsychologists, therapists, social workers and others lets them know that, in fact, there is plenty they can do.
“'OK, this is a terrible situation, you survived cancer, and now we have these issues,'” said Kelly, who reevaluates patients every few years, or as needs arise. “'But there’s something to be done. There’s opportunity for you. There’s a place for you here in this world, and we can find out what that is.' That encouragement and just knowing that they don’t have to do it by themselves is helpful for them.”
“It’s a ray of hope,” she added. “It’s an opportunity to open up new doors for support that they wouldn’t have had or didn’t know they needed. It gets the ball rolling in a different direction that they didn’t know was possible.”
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