Even though a decade has passed since she was successfully treated for the bone cancer osteosarcoma, 23-year-old Vivian Laws has swallowed a sobering truth: “Cancer never exits your life once it enters.”
Having weathered the shifting sands of friendships after her diagnosis at 13, Vivian quickly recognized the transition from cancer patient to cancer survivor can be fraught. After treatment, she worked to build a new base of friends—many of whom had also been through the experience—and embraced the ever-present support of her family and many doctors, nurses and others at St. Jude Children’s Research Hospital.
“It’s a constant struggle for the rest of your life, whether emotionally, mentally or educationally,” Vivian says. “You’re a cancer survivor, and you realize this is your new normal. I think it’s critical to be aware of those struggles in order to have a positive outcome in your survivorship.”
A new St. Jude study offers crucial insight into young adult cancer survivors’ social networks—the collection of family members, friends, coworkers, neighbors and others surrounding and supporting them. But unlike previous research, the effort is the first to measure not just the number of these connections, but their value to adolescent and young adult survivors moving into the next phase of their lives.
Led by I-Chan Huang, PhD, of St. Jude Epidemiology and Cancer Control, the study found that many cancer survivors from ages 18 to 30 actually have more high-quality social connections than peers who haven’t had the disease. But, survivors of brain malignancies have significantly fewer social connections compared to survivors of other types of cancers. Huang and his colleagues developed a new method, called the St. Jude functional social network index, to quantify these connections and potentially translate the information into better support for the nation’s growing population of cancer survivors. This St. Jude index was further tested using survivors recruited from a community survey panel who are not St. Jude patients.
Transitioning to post-cancer lives typically involves becoming independent from parents and starting college or a job.
“The problem is that cancer survivors are at a disadvantage to pursue good social connections and social integration because they have a lot of late effects and chronic conditions stemming from their disease and treatment,” Huang explains.
The St. Jude index proved a better predictor of survivors’ ability to cope with challenges than did traditional indicators. Instead of gauging just the structure of social networks—as in who knows whom—and including only marital status or membership in church or community groups, the St. Jude method explores further. It also measures social connections as a source of practical and emotional support from friends and relatives, along with advice about weight management and physical activity.
This part is key because adolescent and young adult cancer survivors are more likely than their non-cancer peers to be physically inactive and carry extra pounds. And survivors’ supporters tend to step up to the task, providing more advice and help than what’s available to others, according to the study, published in the journal Cancer. Among survivors, higher social network index scores were linked with better coping skills, including less denial, less destructive behavior and more planning for the future.
“St. Jude patients absolutely have more of those connections than any of our non-cancer survivor peers,” says Vivian, who sings the praises of her ongoing visits to St. Jude psychologist Valerie Crabtree, PhD. “That’s because we’ve been set up for success in that sense, especially at St. Jude. We have a million resources here.”
It’s so important that we’re doing research on finding cures for cancer, but it’s also important that St. Jude is doing these studies to find out how to create a better quality of life for cancer survivors—not just at St. Jude, but around the world.
St. Jude scientists are still trying to reveal the link between survivors’ social networks and their health outcomes, as well as identify promising therapies to help patients thrive. The researchers are also streamlining their new tool to enable clinicians elsewhere to measure support for survivors of any age, such as seniors.
Now a marketing coordinator at ALSAC, the hospital’s fundraising and awareness organization, Vivian says she has found “empowerment and strength” in connecting with others by sharing her survivorship story. She’s heartened that St. Jude scientists are examining all aspects of the cancer experience, not just the physical.
“It’s so important that we’re doing research on finding cures for cancer, but it’s also important that St. Jude is doing these studies to find out how to create a better quality of life for cancer survivors—not just at St. Jude, but around the world,” Vivian says. “The care St. Jude provides doesn’t just end at your No More Chemo party. It carries on for the rest of your life, and if we can share some of these findings and interventions, it’s a huge step forward.”
From Promise, Summer 2018