Creating a plan is critical for patients who work during treatment.
“I thought I’d breeze through treatment,” she says, “but it was more debilitating than I thought it would be,” especially because of side effects that included severe fatigue, weight gain and hair loss.
Many survivors worry about job security and push themselves to work through cancer-related pain and fatigue, but balancing cancer and work may be possible with a proactive plan, accommodating employers and medical advancements that include less toxic treatments and medication to alleviate side effects. With almost half of all cancer patients diagnosed under the age of 65, about 60 percent will continue to work. Of those who do stop working during treatment, 80 percent return to the workforce.
Cancer stereotypes have changed dramatically over time, but patients, as well as employers, may still have assumptions about how a cancer diagnosis will or will not affect work. Kate Sweeney, executive director of Cancer and Careers, which provides information on working through cancer treatment, says it’s best to have a plan in place before discussing a diagnosis with your boss or coworkers.
Experts recommend developing a communication strategy, which includes goals, treatment schedule, possible side effects, delegating job responsibilities and who and when to tell about your diagnosis. Explore the company’s policy on sick leave, telecommuting and flex time, and talk with your medical team about what would make treatment easier, such as medication taken orally and to alleviate side effects. Use these tools to plan a strategy with your supervisor. Enter into the conversation with as much knowledge as possible and don’t shy away from suggesting what would work best for you. But Sweeney cautions that both parties should understand the plan may change over time.
“Your situation is constantly changing depending on how treatment goes, so what you set up may not be what you really need, and it can be especially trying for the managers,” Sweeney says. “You need to be realistic with what you can and can’t do. What often happens is the employee takes on too much—not the opposite, which is what you would expect.”
Be up front about your ability and let your supervisor know when you are capable and when you need help. Communicating with superiors and having a set plan will help prevent a supervisor from making assumptions about a patient’s ability, says Sweeney.
Mark Klauk, a clinical social worker and part-time fitness instructor, pared down his work schedule after being diagnosed two years ago with stage 4 colon cancer. Still on chemotherapy, he now works three days a week at his psychotherapy practice and teaches four fitness classes a week.
Although he frequently suffers from fatigue and nausea, the idea of not working at all wasn’t an option for Klauk. Work gives him a sense of function, he says, but cancer has required him to slow down. “To do this kind of work, it requires a lot of focus and concentration,” Klauk says. “When I had more than three appointments in a row—which I don’t do anymore—it was hard to focus and listen.” He now paces himself and sets his schedule to leave time for naps in between sessions.
Klauk’s experience with fatigue is not unusual. A study conducted by Cancer and Careers found that out of 285 women surveyed, fatigue was the most frequent side effect that affected their work (66 percent). Other side effects included nausea (37 percent), hair loss (32 percent) and anemia (22.8 percent). Survivors can work with their medical team to tailor treatment or find medication to alleviate these side effects. Receiving chemotherapy late in the week can also give survivors the weekend to recover before returning to work on Monday. Working with supervisors and coworkers on an ongoing basis can also help modify a patient’s work schedule, which may include working part-time, at home or having a flexible work schedule.
Fifteen years ago studies showed about a quarter of survivors felt discriminated against in the workplace. Fortunately, the rate of job discrimination has decreased, partly due to the Americans with Disabilities Act of 1990 and other anti-discrimination laws that protect survivors from being treated unfairly in the workplace, but also because people have become more sensitive and understanding of cancer in the past decade.
Donna Fontaine, a two-time colorectal cancer survivor, receives part of her chemotherapy regimen intravenously through a computerized pump, which she carries around in a fanny pack for two days during each chemotherapy cycle. She goes to work, grocery shops and dines out while receiving her chemotherapy. “I come to work while on 5-FU and put in a full day,” says Fontaine. “I have been able to educate people here about this ‘lifestyle,’ so that has been a very interesting process.”
Although many survivors feel management and coworkers are supportive, few patients look to their employer for help, Sweeney says. “What is lacking is that formal support.”
One tool some companies are using to assist their employees with cancer is the Managing Through Cancer Pioneer corporate program developed by Cancer and Careers. The program offers information to human resources departments and managers on issues that cancer patients and survivors have in the workplace and how best to support their employees during diagnosis and treatment.
Another recent program that encourages corporations to evaluate how cancer patients and survivors fare in the workplace is the CEO Cancer Gold Standard. Although the program primarily focuses on prevention methods, it also stresses early detection and access to the best available treatments for employees with cancer.
Returning to work after a cancer diagnosis may be more of a mental challenge than a physical one. Although some survivors can work through their treatment and not miss a beat, for others, it’s the emotional transition that is difficult—the new status of being a cancer survivor. While survivors may be physically able to work, many must cope with the reaction of coworkers and employers, reassess their career and refocus on other priorities, such as family, friends or philanthropic work.
Looking back, Flora says she would have done things differently, including taking more time off to recover. “I didn’t have to be a superwoman,” she says. “I also couldn’t envision a future without my work because I had wrapped my identity around it so tightly.”
When her company was bought out and restructured, she was offered relocation to Florida, which meant finding a new medical team in the middle of treatment—but she was able to keep her job and her medical insurance, which she says was crucial. Less than a year later, Flora was caught in a round of layoffs. “I wish I had trusted that even if I took my disability insurance before that and lost my job that I could have found something else,” she says. Although she has a few regrets about how she handled working and cancer, she looks at her survivorship as a gift and started a career-coaching company called Pivot Point Coaching to help other survivors work through and after cancer.
“I think that when a person goes through a life-threatening illness, they reevaluate their life’s work, including what really matters,” Flora says. “This was a major upheaval in my life that turned out to be really positive. Work is only one part of who you are.”