CURE

FALL / 2013

Task Force: Tackling Work After a Cancer Diagnosis

After cancer, dealing with employment issues is all in a day's work.

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High school math teacher Mark Nelson never questioned whether he would work after cancer. After receiving a diagnosis of colon cancer in 2011, Nelson had surgery in June and started chemotherapy just two weeks before the school year began in his hometown of Mondovi, Wis. He had a round of chemotherapy on Wednesday afternoons and taught during the rest of the week using a portable infusion pump. Nelson, now 59, says he needed his job for the paycheck and health insurance. But it went beyond that. “Teaching the kids was saving me,” he says.

Nelson was on a half-day schedule during treatment—the result of a declining student population and budget cuts—but now teaches six periods a day, sometimes from a chair, because of neuropathy.

While he’d like to work more hours, he says the shorter day helps him manage treatment-related fatigue. A former basketball coach at his school, Nelson is looking forward to regaining enough energy to attend night games. “I want to slowly build up to that,” he says.

Returning to work after being treated for colon cancer, teacher Mark Nelson had to deal with neuropathy, fatigue and other treatment-related issues. Photo by Denise Marsolek.

A Variety of Challenges

An estimated 4.8 million people of working age are survivors of cancer. Most successfully return to work after treatment, but some do not. Even those who do go back to work after, or even during treatment, can face a variety of challenges stemming from the physical and psychological effects of their disease and treatment. The good news is that experts say it’s often possible to overcome those challenges, with some planning and employer support.

The nonprofit Cancer and Careers and the market research firm Harris Interactive recently released the results of a poll of 400 people working before and after cancer treatment on what motivated them to continue working. Nearly half (48 percent) said they continued working because they wanted to keep things as normal as possible, and more than one-third (38 percent) said that they wanted to feel productive.

“Most people would say that their greatest source of identity is their job,” says Cathy Bradley, professor and chair of Virginia Commonwealth University’s Department of Healthcare Policy and Research in Richmond, Va. “It provides self-esteem, a distraction and a social outlet.”

Most people would say that their greatest source of identity is their job.

—Cathy Bradley

Not everyone returns to work after treatment. Some can’t, while others don’t have to, or decide they have other priorities, says Michael Feuerstein, a professor of medical and clinical psychology at the Uniformed Services University of the Health Sciences in Bethesda, Md., and a survivor of brain cancer.

Residual symptoms can make returning to the workplace, and staying there, a challenge. A study published this year in the Journal of Cancer Survivorship found that patients whose cancer was non-metastatic were less likely than those who were less affected to be working at least six months post-diagnosis if their symptoms interfered with work at least moderately. And those who can’t work at all may merely represent just “the tip of the iceberg,” with many others working part-time when they’d rather be working full-time, or who can’t work at their previous level or rate, says Amye Tevaarwerk, an assistant professor of hematology/oncology at the University of Wisconsin-Madison and a lead author of the study.

Some late effects of treatment are physical and can be long-standing or permanent. Lymphedema, for example, might not occur until years after treatment, yet it can be a challenge for people whose jobs require physical activity, such as heavy lifting. A 2010 study of patients with newly diagnosed breast and prostate cancer, co-authored by Bradley and published in the Journal of Cancer Survivorship, found that about 36 percent of women and 17 percent of men reported a physical disability 18 months after diagnosis.

Fatigue is also a problem for many survivors, and sleep often isn’t a solution. The insurance company Unum offers practical applications to employers, such as workstation flexibility, time and space for breaks, and the ability to plan productive work to avoid the cycles of fatigue. Research also suggests physical activity can help, says Patricia Ganz, a medical oncologist and director of the patients and survivors program at the Jonsson Comprehensive Cancer Center at the University of California, Los Angeles. She co-authored a 2012 study that found Iyengar yoga improved fatigue in survivors of breast cancer.

Chemotherapy and radiation also can cause memory and cognition problems that can make functioning at work tough for some people. In Bradley’s study, even 18 months after diagnosis, 22 percent of the women and 7 percent of the men reported cognitive disability—and they were more likely to leave the workforce as a result. Ganz is now leading a randomized trial examining whether homework assignments and 10 hours of group sessions can improve attention, memory, multitasking and encoding in survivors of breast cancer.

[Infographic: See how cancer survivors are changing the face of the workforce]

Be Prepared

Nelson says being direct and honest with his supervisors has been key. When he found out that he was scheduled to attend an all-day seated in-service meeting not long after treatment, he told his superintendent that it wouldn’t be possible. “As long as I was upfront, they worked with me,” he says. Disclosure of a disability is required of workers who need a reasonable accommodation under the Americans with Disabilities Act (ADA) or disclosure of an illness for those who need to take unpaid, job-protected time off under the Family Medical Leave Act (FMLA).

We hear that people don’t want to be labeled as “cancer girl” or “cancer boy.” They want work to be a place of respite.

—Kate Sweeney

With co-workers, the question of how much detail to disclose can be trickier. “We hear that people don’t want to be labeled as ‘cancer girl’ or ‘cancer boy,’” says Kate Sweeney, co-founder of Cancer and Careers and executive director of the Cosmetic Executive Women Foundation. “They want work to be a place of respite.” She advises people to be prepared for the inevitable “How are you?” with a quick answer and a transition into another subject.

“I’ve always been pretty good at gauging when you can have a conversation,” says Mitria Di Giacomo, a survivor of breast cancer who owns her own marketing consultancy in New York. “If I felt it would be a detriment or would be perceived badly, I wouldn’t talk about it.” She used a career coach through Cancer and Careers. Survivors “need guidelines,” she says. “It’s a whole new situation.”

[Read "To Tell or Not To Tell"]

Some want—or need—to more fully disclose what’s going on. Nelson says he told his students details about his surgery and his need for a colostomy. “I had to tell them,” he says. “I told them if I passed gas they’d better laugh because I would.”

Define Reasonable

Not everyone finds supportive supervisors and colleagues, however. A recent survey of adults living with cancer in the U.K. found that 37 percent of respondents who returned to work after treatment experienced some type of discrimination.

“We see a number of cases involving outright employment discrimination or suspected discrimination,” says Shawn Kravich, associate director at the Cancer Legal Resource Center, a joint program of the Disability Rights Legal Center and Loyola Law School in Los Angeles. Some employers are blatant in discriminating—Kravich says one of his clients was fired via voicemail specifically due to cancer—but usually the discrimination is more subtle. “People often say, ‘I had to take time off from work. I’m returning. And even though I’m working hard, my employer keeps writing me up for job performance, even though I feel like I’m doing my job the way I was always doing it,’” he says.

Earlier this year, Lamar Dobbs was abruptly let go by the nursing home where he had worked for nearly three years. The 56-year-old certified nursing assistant from Wilmington, Del., says he was initially treated well by his supervisors after returning to work last fall from a 12-week medical leave following surgical removal of a cancerous kidney. His bosses switched his duties from the more physical nursing tasks to a desk job, making it easier for him to recover.

A few months later, Dobbs developed a hernia, which was a complication of the surgery, requiring another operation. After presenting the necessary paperwork to the director of nursing, Dobbs recalls being told not to worry about his employment situation and to instead focus on his health. But when he returned to work following the hernia repair, he says his supervisor told him that he no longer had a job. Though the employer’s official reason for termination was that Dobbs had exhausted his medical leave, Dobbs isn’t satisfied with the explanation.

Now Dobbs receives unemployment benefits and is working on getting better—he is also being treated for prostate cancer—before he looks for work again. “It really hurts a lot,” he says of the circumstances surrounding his termination. “I can’t understand it.”

[Learn what legal protections are in place for survivors who work]

The ADA requires private employers with at least 15 employees to make “reasonable” workplace accommodations for employees. The definition of reasonable is very specific to the individual and his or her job responsibilities, says Joanna Fawzy Morales, a cancer-rights attorney and CEO of Triage Cancer, a nonprofit organization offering education and resources on cancer survivorship issues. Telecommuting may be a perfectly reasonable accommodation for an office worker, for example, but maybe not be for an airline pilot.

Changes to the work space, technology and company policy, such as working from home or using a chair at a retail checkout counter, can be reasonable accommodations if they’re conducive to the job, Morales says. So is more time off, or a job transfer—such as a teacher with a compromised immune system shifting to an administrative role—if there’s a vacancy, she says. (Check potential accommodations at askjan.org, the Department of Labor’s Job Accommodation Network, for more information). The protection doesn’t apply, though, if a worker is simply no longer able to perform the essential functions of the job.

Cancer Can Be Scary

One week after having surgery on his brain tumor, Feuerstein returned to work, where he immediately suspected his employment situation had changed. He says a grant he had received before his diagnosis was returned to the source because no one could figure out to whom the money had been allocated. His employer’s attempt to accommodate his illness and recovery involved someone taking notes for him at conferences, which he didn’t need. So Feuerstein filed a claim under the ADA but later dropped it when his situation improved.

Feuerstein co-authored a study in 2007 that found that people with cancer-related disputes were more likely than those with impairments, such as cardiovascular or neurological problems, to claim under the ADA that they’d received differential treatment or lost their job. Even with the higher profile of cancer survivors, “people are still scared of cancer,” Feuerstein says. He also acknowledges that businesses have legitimate concerns, such as when long-term or late effects of treatment affect a survivor’s productivity.

If a worker is temporarily unable to perform a job, the FMLA permits up to 12 workweeks of unpaid leave per 12-month period—so long as the private employer employs 50 or more people. Medical certification must be supplied if an employer requests it.

Debra Wolf, a senior attorney at LegalHealth, a program of the New York Legal Assistance Group, advises people seeking accommodations to start with the human resources or employee benefits department, not a direct supervisor. She says workers should put everything in writing. They should also include a letter from their physician explaining that they’ve reviewed the request for an accommodation, that it’s medically necessary and that the worker is able to perform the essential functions of their job. She also urges people to understand their state laws, which may go beyond provisions in the ADA.

A Different Perspective

Many survivors find that they have a different perspective on work after cancer. Di Giacomo’s 2007 breast cancer diagnosis came in the middle of a career transition: She was trying to figure out whether to go back to a corporate job or start her own business. She didn’t work for a few weeks while she researched the disease and prepared for surgery. But after the surgery, she picked up some freelance public relations work, committing for a four-month stretch at three days a week.

While still feeling the effects of chemotherapy, Di Giacomo discussed a job with a potential employer. When the potential employer said, “This is a 24/7 commitment,” she knew it probably wasn’t for her. Now she’s thrilled to be working for herself, on her own terms. “I’ve always enjoyed work. Now I think it’s important, but I’m not interested in being at my desk for 15 hours,” she says. “Before, I didn’t realize that life could be fragile.”

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