Cancer diagnoses can herald looming life-and-death battles, often won, but some survivors are left traumatized by the fight.
Cancer patients commonly walk away from life-saving chemotherapy and radiation treatments having developed post-traumatic stress disorder.
Duke University has created the Cancer Distress Coach app to help.
Based on a U.S. Department of Veterans Affairs app designed for soldiers, the Distress Coach app is helping those who’ve battled cancer, and it’s downloadable on Android and iOS. Duke’s new medical application has the potential to be adopted by clinical centers worldwide.
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Aguinita Aiken, 64, of Durham, can easily recall the details of her illness.
She got to her routine mammogram appointment on time on Aug. 14, 2014 — a Wednesday. The process was mundane as always until two days later. A nurse called her house and said, “You need to come for a diagnostic.”
The following Wednesday, Aiken’s gynecologist told her, “If they’re biopsying, it’s more probable than possible that you have cancer.”
“So I thought I was mentally ready for it,” Aiken recalled.
A week and one diagnostic later, a doctor called, “Nita, you do have cancer,” the doctor said.
Aiken was not as prepared as she had thought.
“All I heard was ‘You do have cancer.’” Aiken said. “When he said, ‘Cancer’ … I didn’t hear anything else. It was like … a race horse.”
Like a race horse wearing blinders, Aiken explained, her peripheral vision narrowed until her sight neared a blindness, her senses overwhelmed by the singular thought — me, cancer.
A surgeon told her, “We need to do the surgery right away.”
Aiken recalled, “I said, ‘Well, I have a trip planned to Australia and this is a trip of a lifetime.’”
Her surgeon said, “Do you want to go on vacation next year?”
Were seats at the Sydney Opera House worth dying for?
The Cancer Distress Coach app, launched in May, is the brainchild of Sophia Smith, an associate professor at the Duke School of Nursing.
The app gives cancer patients and survivors tools like guided meditations and relaxation exercises involving the tightening and releasing of muscles. A step-by-step tool, designed specifically for PTSD, coaches its users into relaxation, helps identify the causes of agitation and lists best responses.
Cancer-related PTSD can manifest in symptoms like sleep deprivation, anxiety, varied and stacking fears, vivid flashbacks to treatments’ effects, fear of recurrence and nightmares of diagnoses or having to repeat treatments.
“Similar to the nightmares that a war vet might have,” Smith said.
We're excited by our app's potential to reach another population of trauma survivors, that have not really been widely acknowledge as trauma survivors.
Eric Kuhn, clinical psychologist with The National Center for PTSD
As a girl living in Poughkeepsie, New York, Smith wanted be a nurse when she grew up. But that aspiration died at 16 when she developed Hodgkin lymphoma, and for two years spent her weekends receiving treatments — chemotherapy and radiation — in New York City.
In the 1970s, anti-nausea medications weren’t as advanced as they are today and a teenaged Smith vomited through her Saturdays and Sundays and was back in class Monday mornings. She graduated high school on time, but the smell of hospitals, and even doctor offices, made her sick for years to come.
She majored in business, went to work for IBM, got married, got pregnant, was offered a senior managerial post in the company’s new office in Research Triangle Park, moved, had twin girls, and 17 months later, while on maternity leave in her mid-30s, discovered a lump in her breast.
After Smith was treated for and recovered from breast cancer, she embarked on a new career path as a social worker, earning her doctorate from the School of Social Work at UNC-Chapel Hill in 2007.
“When I was a UNC Ph.D. student, there wasn’t a big recognition of PTSD symptoms in cancer survivors,” Smith said.
As part of her dissertation, Smith studied 886 lymphoma survivors.
Lying in bed, feeling imprisoned by negativity, Aiken said, she'd rolled over and lighted up her phone.
“There was a general thought out there that the diagnostic phase and the treatment phase were really traumatic,” Smith said. “So I think people thought, that if somebody did have PTSD, that it would resolve after that period. We found otherwise.”
In a 2010 follow-up study, Smith said 1 in 3 of the “lymphoma-cohort survivors” had persistent or worsening PTSD symptoms over a five-year period. Nearly 1 in 10 survivors met the criteria for “full-blown” PTSD.
In 2014, Smith won an Innovation Pilot Program grant, receiving around $40,000 to pursue the app’s creation.
Aiken’s breast cancer was caught early and successful surgery removed one cancerous lymph node. She did go Australia. The day after she returned, she started radiation treatment.
“I really started having problems when I went for radiation, Monday through Friday,” Aiken said. “I was going every day, just every day — every day.”
PTSD often comes with depression.
Aiken would get home, make sure the blinds were closed and “just sit there.” The thought of a party with more than six people was dreadful and in church, she started sitting against the wall with her husband sitting on — “protecting” — her other side.
One day, a nurse asked Aiken, very casually, how she was doing.
“And I just burst into tears,” Aiken recalled. “I said, ‘I’m incredibly depressed.”
All I wanted was my dog, Raleigh. … He's a Maltipoo.
Aguinita Aiken, breast cancer survivor
The nurse said, “Well, we have this app.”
Duke’s Cancer Distress Coach app is modeled on the VA’s National Center for PTSD’s PTSD Coach app which was launched in the spring of 2011.
Clinical psychologist Eric Kuhn headed the project at the Menlo Park VA in California, which has intensive 60 to 90-day residential programs in which veterans work to abate their PTSD symptoms.
Kuhn said he took app-prototypes to those residential programs and asked for feedback.
“They told us, they wanted tools to use in-the-moment,” Kuhn said. “While standing in line at a supermarket, if they started feeling symptoms, feeling exposed, vulnerable.”
With a click of a button, PTSD apps can lead their users through techniques like deep diaphragmatic breathing anywhere, anytime.
Like a race horse wearing blinders, Aiken explained, her peripheral vision narrowed until her sight neared a blindness, her senses overwhelmed by the singular thought —me, cancer.
Aguinita Aiken, breast cancer survivor
While helping to code the Distress Coach app, Innovation Solution architect Jamie Daniel’s own wife was diagnosed with a rare cancer, olfactory neuroblastoma.
“As my wife was going through her radiation treatment, the app helped her and it helped me,” Daniel said.
Cancer related PTSD can manifest in symptoms like sleep deprivation, anxiety, varied and stacking fears, vivid flashbacks to treatments’ effects, fear of recurrence and nightmares of diagnoses or having to repeat treatments.
The Distress app has a learning section and a list of support centers for patients and their caregivers.
“My wife sat in the Cancer Center talking to other people,” Daniel said. “When they looked like they might be upset, she said ‘You ought to try this app.’”
Aiken’s treatments were painful, she recalled, “It ruined my veins. It burned me here and across here. … It’s not the kind of tired you can rest from and feel better.”
But, they were comforting too, “When you are doing the treatment, you’re thinking, ‘At least somebody is doing something to fight this caner.’ So even though I’m depressed, ‘I’m OK.’
“Then when they leave you alone, you think, they aren’t doing anything anymore,” Aiken recalled. She remembers waking-up the middle of the night with obsessive thoughts like, “I bet you my cancer is back,” Aiken recalled.
Lying in bed, feeling imprisoned by negativity, Aiken said, she’d roll over and light up her phone.
She likes the guided meditations down country roads, rivers, beaches and through forests.
An app tool allows Aiken to upload “soothing” and favorite songs which play while pictures of loved ones slide by on the screen.
Aiken played Diana Krall’s easy-going “Why should I Care” and when it finished, the beat of an uptempo, aggressive hip-hop song dropped.
What rap song?
“Oh, I’m not telling. No, no. Nobody’s going to hear about that one. Nuh-uh,” she said and laughed.