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Dome - Managing Cancer at Work

Dome January/February 2015

Managing Cancer at Work

Date: January 7, 2015

A new resource helps employees and their supervisors achieve some peace of mind after a cancer diagnosis.


HAVING THE CONVERSATION: Discussing a cancer diagnosis and assessing its impact on work life are topics covered by a free online program for employees and their managers.
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HAVING THE CONVERSATION: Discussing a cancer diagnosis and assessing its impact on work life are topics covered by a free online program for employees and their managers.

Every morning, as she enters the Harry and Jeanette Weinberg Building, Terry Langbaum can feel the angst a cancer diagnosis brings. Looking weary and apprehensive, patients line up at registration kiosks. Family members converse in hushed tones. Books, snacks and tablets in tow, they scramble to appointments.

Langbaum, chief administrative officer of the Johns Hopkins Kimmel Cancer Center, also knows that many of these people are Johns Hopkins employees. Last year, approximately 600 employees at The Johns Hopkins Hospital and Johns Hopkins Bayview Medical Center alone were diagnosed with cancer. Countless other staff members serve as caregivers for spouses, children or parents who have the disease.

According to the American Cancer Society, one in two men and one in three women in the United States will be diagnosed with cancer during their lifetime. And many employees affected by cancer, says Langbaum, want to—and need to—continue working.

Now, any Johns Hopkins Medicine employee can take advantage of Managing Cancer at Work, a new Web-based resource. The program, which is already in place at the national firm Pitney Bowes, is also being marketed to other companies across the country.

The brainchild of Langbaum and Lillie Shockney, administrative director of the Johns Hopkins Breast Center and director of cancer survivorship programs, the resource suggests ways for employees to tell supervisors and colleagues about their diagnosis. It also offers information about how to manage specific cancer treatments with help from a cancer nurse navigator, free of charge.

At the same time, the program supports Johns Hopkins managers, who can log on to the site through a separate portal. There, they’ll find ways to help them understand what to expect and to respond appropriately upon learning that a staff member has cancer.

Two years in the making, the program includes hundreds of links to information about the most common cancers and their treatments. Johns Hopkins-commissioned videos offer real-life stories and role-playing features on such topics as how to break the news of a diagnosis to a supervisor. There is also information on cancer prevention and the early signs of disease.

“Knowledge is power,” says Langbaum. “To be able to read about your tumor, your treatment and the impact both might have on your ability to work—as well as on your family, finances and family medical leave—can go a long way to keep employees, and their supervisors, from feeling overwhelmed.”

Drawing from Experience

For Langbaum, the program is the culmination of years spent pondering cancer’s physical and emotional fallout and its impact on the workplace. With aching clarity, she recalls the day in 1982 when she learned that the biopsy of a lump on her neck tested positive for Hodgkin’s lymphoma. She would need surgery to remove her spleen, followed by nine weeks of radiation.

Then 34, married, with children ages 7 and 9, Langbaum was working full time and enrolled in a master’s degree program. “I was in shock, but I was too busy to react,” she says.

However, she fell prey to the troubling questions that afflict cancer patients who continue to work: How much information do I need to disclose? What if I get side effects at work? Will my colleagues treat me differently? Will this affect my chances for a promotion? Can I afford a long absence if the treatment doesn’t go well?

To her relief, the manager of the Johns Hopkins clinic where she was then working responded with a hug when hearing about her diagnosis. And Langbaum’s supervisor said he would be flexible and supportive during treatment.

Driven to prove her diligence—and to maintain some normalcy—Langbaum missed only two weeks following her surgery. Not every cancer patient can maintain such a schedule, however. Over the course of a year, breast cancer patients missed an average of 44.5 days, and prostate cancer patients, 27 days, according to a 2011 study in Critical Reviews in Oncology/Hematology. Those taking care of parents, spouses or children with cancer often need to take off more time than anticipated.

Such absences cause managers to worry: How much time will the person need to take off? Am I following the letter of the law related to family medical leave? What effect will this have on the team? What if the quality of his or her work deteriorates?

Langbaum’s experience as a cancer patient and as a manager got her thinking about creating a vehicle to address the anxieties and lack of knowledge that employees and their supervisors share. She knew just the person to consult: her colleague and fellow cancer survivor Shockney, who had long counseled employees diagnosed with breast cancer on how to continue working during treatment.

Like Langbaum, Shockney encountered positive support on the job at Johns Hopkins when she underwent breast cancer treatment 22 years ago and again two years later. But the experience of a friend in a different state who fought to keep her job after disclosing her condition showed Shockney the need for broader workplace understanding of cancer.

Together, Shockney and Langbaum decided it was time to craft a comprehensive online educational resource for employees affected by cancer and for managers who want to learn how to best support them while also preparing for their absence.

“Supervisors need to know that cancer treatment can change in midcourse, sometimes causing difficult side effects,” says Shockney. “It’s important that employees and their supervisors speak regularly about how these changes might affect work.”

Each section of the new website has a dropdown menu with specific concerns an employee might have, such as questions to ask the oncologist, understanding insurance coverage and how to share a diagnosis with co-workers. There are also topics that pertain to managers.

Extending Johns Hopkins’ Expertise

Managing cancer at Work can also be customized for other companies as a Johns Hopkins HealthCare program, helping employees across the country while bringing in additional revenue for the institution.

From the outset, Patty Brown, president of Johns Hopkins HealthCare, embraced the idea of scaling up the program and marketing it through Johns Hopkins HealthCare Solutions—in partnership with Johns Hopkins Medicine’s Kimmel Cancer Center. 

“Employees and employers need to think about cancer differently,” says Brown. “In many cases, cancer has become a chronic condition, and employees want help and support to stay on the job and to stay productive.”

Last October, the program went live at Pitney Bowes, a mailing and shipping company based in Stamford, Connecticut. Since then, nurse navigator Marie Borsellino has helped many of those employees cope with medical and work issues while being treated or when serving as caregivers. Now she’s available to do the same for Johns Hopkins Medicine employees.

As they continue to explore ways to help people face the frightening and complicated challenges of cancer, Langbaum and Shockney hope the program will provide guidance and support. Says Langbaum, “We want fellow employees and managers to know they’re not alone.”

—Judy F. Minkove

For more information on Managing Cancer at Work, visit managingcanceratwork.com, PIN number 6229.

To learn more about Lillie Shockney’s personal cancer journey, visit bit.ly/LillieShockneyCancerStory.

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The View from a Caregiver

Johns Hopkins Hospital security guard Nelson Moody, a single father of five, was at work when his 7-year-old daughter, Alexia, called to say that “her heart was hurting.” Several hours later at the Emergency Department, Alexia’s blood work came back positive for leukemia.

“My world just crumbled,” says Moody. “It shattered like glass.” When his daughter was admitted to Johns Hopkins, he stayed with her for 44 straight hours. He learned she would need chemo and many follow-up appointments.

His supervisor reassured the Weinberg guard that his job was secure and that his co-workers would help as much as possible. But there were some personally rough moments he never anticipated.

One day, about two months into Alexia’s treatment, Moody started crying while he was at his post, something he’d never experienced. “I thought to myself, ‘Will I keep crying?’”

As his daughter’s health improved, so did Moody’s outlook. Now 12, Alexia has been in remission for the past five years. But the physical and emotional demands of her illness were often overwhelming, Moody remembers.

“A lot of times people forget about the caretakers,” says Moody. “We need support as much as the sick person does.”

Watch Nelson Moody tell his story: bit.ly/NelsonMoody

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Help Is Just a Phone Call Away

Nurse navigator Marie Borsellino recently took a call from a caregiver who was distraught about her husband. Although he had been treated with chemotherapy and radiation for colon cancer, he now refused to have the original tumor removed. Borsellino led the caller to a Web-based resource on National Comprehensive Cancer Network guidelines. She also referred her to a counseling center near the woman’s home.

Ultimately, she counseled the Pitney Bowes employee, the decision for treatment belonged to her husband. “But no matter what,” Borsellino told her, “we’re here to support you.”

As lead nurse navigator for Managing Cancer at Work programs at Pitney Bowes and Johns Hopkins Medicine, Borsellino helps myriad employees sort out their options for cancer diagnosis and treatment. She also provides callers with ways to approach difficult conversations.

Certified by the National Consortium of Breast Centers and the Oncology Nursing Certification Corporation, Borsellino also has been a Komen for the Cure-funded nurse navigator since 2008, assisting patients through the challenges of multidisciplinary care.

Having worked in both inpatient and outpatient settings, Borsellino has acquired knowledge that serves her well in helping employees navigate the complicated world of cancer care. 

“A lot of this job involves education and leading people to the resources they need,” she says. Should a problem arise, like when a patient needs an expert second opinion because he or she has other complex medical problems, Borsellino can investigate it and follow up. All conversations are free and confidential, and patients or caregivers must sign releases in order to have access to their medical record.

To reach Managing Cancer at Work nurse navigator Marie Borsellino, call 410-955-6229 or toll free at 844-446-6229.

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