Addressing the Emotional Side of Cancer

Mar 17, 2014 at 12:00 am by Staff

UF Health Cancer Center at Orlando Health joins forces with Cancer Support Community to provide free specialized cancer support services

Around the same time Orlando Health changed its cancer program from MD Anderson Orlando to UF Health Cancer Center at Orlando Health, the metro area's second largest health system unveiled another collaboration to benefit the Central Florida community: a pact with the national Cancer Support Community (CSC) to mark the second hospital partnership in the United States to offer free cancer support services to patients and their families.

"CSC's first hospital was part of a healthcare system in Greenville, South Carolina, that's fairly similar to ours," said Diane Robinson, PhD, a neuropsychologist and program director of CSC and Integrative Medicine at Orlando Health, who took the post last year, after serving as an adjunct professor at the University of Central Florida and a staff psychologist with the Veterans Health System. "However, we have the bragging rights of being the first hospital in the nation to offer a full CSC program curriculum."

The timing of the CSC program rollout with the cancer center name change is coincidental, said Robinson, noting the agreement between Orlando Health and CSC was inked in October 2012.

"It took some time to get the agreement signed through MD Anderson Houston," she explained. "Our COO Beth Rudloff had so much passion for the programming. She knew we could do something no one else had offered, that we had all the pieces, but they hadn't been put in place."

Persistence prevailed, along with philanthropic support of Women Playing for TIME (Technology, Immediate diagnosis, Mammography, and Education). In January, the local group that has raised money for the Orlando Health Foundation through golf and tennis tournaments since its inception in 1993 presented the UF Health Cancer Center at Orlando Health with a $600,000 check to support the CSC and other programs. The funds allow the creation and expansion of cancer support groups, educational workshops and social groups offered free to anyone impacted by cancer in Orange, Seminole, Osceola and Lake counties.

"We had a couple of pilot programs in the fall, and a mind-body-spirit program in place through December, so turning the calendar year made it an easy starting point," said Robinson. "I was also able to tweak some programs, such as a support group that met monthly without particular structure to one that meets weekly with a purpose."

Three of the nearly 20 new CSC programs include Cancer Transitions: Moving Beyond Treatment®, a six-week program that focuses on wellness, exercise, emotional health, nutrition and medical management tips, and includes training in relaxation and stress management; Kids SupportSM, a 10-week CSC program designed for children ages four to 12 that works to reduce the stress of cancer in the family by helping them learn cancer concepts; and CancerSupportSource SM, a comprehensive distress screening tool that delivers screening, referral and follow up care via a single, streamlined, web-based program.

"It's intuitive that if someone has cancer, they need support," said Robinson. "Often, the cancer patient's primary care doctor may ask how they're doing, and often, the patient will say something like, 'I'm doing fine. I have my family.' The doctor may ask if they're depressed and the patient likely won't admit they are. And that's the end of the conversation about the emotional side of the disease. In both minds, it's been covered."

It's a myth, said Robinson, that cancer patients must be "good soldiers" and therefore underplay the emotional anguish related to the disease.

"Part of our task is educating physicians to change the tone of the conversation and ask the question in a different way," she said. "A better question is 'how are you coping?' perhaps followed by 'would you like more coping skills?' and 'would you like to join a group of people who are experiencing the same thing?'"

Robinson also encourages patients to be candid with their primary care doctor about the emotional brunt of the disease.

The CSC program at Orlando Health "creates a really big net," she said. "We're not treating the depression. We're teaching 'hoping and coping' skills. But we're also a referral center. For example, if someone is struggling to a greater extent, we can make the proper referral to a mental health professional."

Robinson pointed out the strong focus on programming for children affected by cancer.

"Every year, some 11,000 children are diagnosed with cancer," she said. "Compare that to children who are siblings or children of patients with cancer. That's 2 million kids! And they're often inadvertently overlooked."

Robinson's paternal grandfather died from prostate cancer when she was a teenager, and her dad passed away from lung cancer complications when she was a young mother.

"When my dad died, my son was four or five years old, and his granddad was the universe to him," shared Robinson. "At the funeral home, he kept wondering why people were talking about him, but his granddad wasn't there. He was really insistent on learning where he was, so I finally pointed and said, 'he's in that box, sleeping and already in heaven.' My son asked 'why is granddad in a box? To have children wrap their heads around complex life and death issues is very challenging."

Caregivers, who face the brunt of juggling the care for cancer patients, are also provided retreats and other rejuvenation opportunities.

Last year, CSC - the result of combining The Wellness Community and Gilda's Club in 2009 - delivered more than $40 million in free services to cancer patients and families.

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