WHILE RECEIVING CHEMOTHERAPY at the Dana-Farber Cancer Institute in Boston, real estate agent Richard Power often worked on his laptop with his cellphone and tablet close at hand. After twice-a-month treatments with Avastin (bevacizumab), leucovorin, fluorouracil and Camptosar (irinotecan) at Dana-Farber, Power, 63, would leave for his Marshfield, Massachusetts, home with a portable pump that administered fluorouracil for two days. Despite feeling fatigued after each treatment, dealing with bowel issues such as constipation and diarrhea, and having an occasional chemotherapy-induced stutter, Power managed to balance his demanding job with his treatments.
Power has been employed steadily since his stage IV colon cancer diagnosis in 2010. Typically he wakes up at 5:30 a.m., and after a cup of coffee, he’s ready to sell real estate in Marshfield and Scituate, coastal towns about 30 miles southeast of Boston. Power says real estate work never stops: He’s busy seven days a week meeting with clients, posting listings and showing properties.
“It keeps your mind off things,” he says of his work. “It allows you to feel normal, and it allows you to feel like you have part of your life back.”
Roughly 40 percent of the 14.5 million cancer survivors in the U.S. are of working age. Many survivors need to keep their jobs through treatment and recovery because they can’t afford to take extended time off without pay or because their health insurance is provided through their employer. Power is one of many cancer survivors who choose to keep working during treatment. Going to work can help survivors maintain a sense of purpose, in addition to offering a support network and a welcome distraction from their serious illness.
“It can be a way to stay connected to who you are as a human in terms of what you contribute to the world,” says Rebecca V. Nellis, chief mission officer of Cancer and Careers, a nonprofit organization in New York City that helps people with cancer succeed at work.
Even though improvements in cancer treatments and survival have made it possible for more patients to stay on the job, says Nellis, not every patient wants to. The decision is personal and influenced by the patient’s diagnosis and treatment and by the type of work he or she does. Before arriving at a decision, Nellis says, patients should talk to their cancer care team about a treatment timeline and possible side effects and describe to them what their job entails. Patients also should understand their state and federal employment rights and their company’s policies, and then decide how much of their diagnosis they want to share with their employer, or whether they want to share it at all.
As the sole provider for her 11-year-old son, Ashley Thompson didn’t question whether she would continue working after a March 2011 diagnosis of stage I kidney cancer. Her difficulties were compounded when she was diagnosed with an autoimmune disorder that led her body’s immune system to attack healthy cells.
Thompson, 36, who lives just outside San Antonio, Texas, was able to adjust her hours and work from home during her diagnosis and treatment. In May 2011, her urologist removed her diseased kidney, and during recovery, she answered work emails from her hospital bed. A month later, she went to the Mayo Clinic’s campus in Arizona for nearly two weeks to see specialists about treating her autoimmune disorder.
Thompson says she kept her employer informed as her diagnoses unfolded, and that her supervisor and co-workers were supportive. She used four weeks of paid time off during treatment, but didn’t take any time off through the Family and Medical Leave Act (FMLA), which allows eligible employees to take unpaid, job-protected leave. Looking back, she says she would have taken more time to care for herself and deal with the emotions she felt. For example, she wasn’t prepared for the depression that persisted for almost two years after her treatment and on some days prevented her from leaving her bedroom. To cope with her depression, she saw a counselor and shared her story with others as a way to help them. In 2013, Thompson, who still struggles with her autoimmune disorder, changed jobs to make a fresh start.
“I only left because I wanted to feel in charge,” she says. “I wanted to come with my plan on the table and have them accept me rather than feel accommodated.”
Unemployment and Survivorship
Unemployment after cancer can make for a difficult transition to survivorship.
For cancer survivors who want to work, unemployment after cancer can make for a difficult transition to survivorship.
Tara Lee Cernacek, who was diagnosed with stage II breast cancer in February 2012, was laid off from her secretarial job in April 2013 in the midst of chemotherapy. Cernacek, now 45, waited four months until her hair began to grow back before applying for jobs.
She says she searched for jobs online every day, but she was unable to find another full-time position for more than two years. She recently was hired as a full-time executive assistant for a nonprofit organization.
Before finding her new job, Cernacek, who lives in Brooklyn, N.Y., struggled with anxiety over finances, planning for the future, cancer recurrence and lack of health insurance.
“Some days, I just let it consume me,” she says. “Other days, I [tried] to snap myself out of it … by trying to find solutions.”
After getting laid off, she paid roughly $1,200 monthly for a year for health insurance through COBRA, but after that she could no longer afford health insurance. She is covered now through her employer.
Of her time out of work, she says “It’s a juggle every month of who to pay less and who to pay more. It’s scary that there’s nothing—no savings, no anything.”
Cernacek isn’t alone in her struggle to find a job. A study published in the June 15, 2014, issue of Cancer found that 30 percent of 746 early-stage breast cancer patients who were working at the time of diagnosis were no longer working four years later. About 50 percent of those surveyed after treatment who were not working said it was important for them to work, and 31 percent of those not working after treatment were actively looking for a job.
Reshma Jagsi, a radiation oncologist at the University of Michigan Health System in Ann Arbor, led the study and says that long-term treatment side effects such as neuropathy and cognitive issues might affect survivors’ ability to stay employed. For survivors who stopped working during treatment, she says, a competitive job market may make it harder to return to their jobs or find new employment. She supports efforts to identify breast cancer patients who can safely avoid chemotherapy and its side effects.
“There are women who clearly need chemotherapy,” Jagsi says. “In those cases, recognition that there may be an adverse impact on employment may help us to prepare the patient better to mitigate that effect.”
Know Your Rights
Joanna Morales is a cancer rights attorney and CEO of Triage Cancer, a nonprofit organization based in Culver City, California, that focuses on connecting survivors, caregivers and health care professionals to information and resources on cancer survivorship. She says patients need to understand their employment rights and company policies before deciding whether to continue working.
“Then you can start to figure out if working through treatment is something you’re actually able to do, based on your rights, your specific job responsibilities and your health,” she says.
Legal protections can help people who keep working, she says. The Americans with Disabilities Act (ADA) applies to private-sector employers with 15 or more employees and also protects public-sector employees. The legislation prohibits discrimination in the workplace against qualified employees with disabilities and forbids employers from discriminating when making decisions about hiring, firing, benefits and promotions. The ADA also requires employers to make reasonable accommodations—which could include a change in work hours or company policies—for people with disabilities. Though the act has been in force for 25 years, Morales says, many people, including employers, are unaware of its provisions.
For example, she says, a patient who has neuropathy in the fingers from chemotherapy and types at work can request speech recognition software. A patient who needs mornings off for doctor appointments can ask to work a later shift. A cashier who is too tired to stand could ask for a stool. The act requires that employers provide accommodations to eligible staff members, Morales says, but the accommodation doesn’t have to be exactly what the employee requests as long as it is effective. Employers can reject a request if it poses an undue hardship on the company.
Morales says patients also should learn about their state’s fair employment laws, which might offer more protection than the ADA. For example, state laws comparable to the ADA in California and New York apply to companies that have at least five and four employees, respectively.
Some patients also can use the FMLA to keep their jobs through cancer treatment. The act, which applies to private-sector employers of 50 or more employees and includes public-sector employees, allows workers to take as many as 12 weeks of unpaid leave per year while securing their job and health insurance. Morales says many people don’t realize they can take FMLA in segments—for a week or even a day at a time—rather than all at once.
Morales says patients should understand their employer’s policies and benefits, including paid time off and health, dental, vision and life insurance. And if an employer isn’t bound by law to provide an accommodation or time off, the employee should consider asking for it.
“The worst-case scenario is they’ll say no,” Morales says.
A Difficult Subject
Many patients are unsure how to broach the subject of their cancer diagnosis with their employer, or even whether they should. The ADA doesn’t require patients to disclose their diagnosis, Morales says, only treatment side effects—such as concentration and memory problems—that may warrant an accommodation.
“There’s a lot of fear,” Nellis says about informing an employer. “Fear of not being supported, fear of being dismissed from their role, fear of being supported but being seen differently so that they miss out on opportunities for professional growth or advancement.”
In deciding who to tell about a diagnosis and how much to share, she says, patients should consider what accommodations or other legal protections they might need, whether they are open or private people, and what their workplace is like. They should talk to their health care team about a treatment timeline and possible side effects that might affect their ability to do their job.
When talking to a supervisor or human resources manager about cancer, Nellis recommends that an employee describe why it’s important to continue working. The employee should relate what he or she knows about the treatment course at that time, and alert the employer that things could change later. She says it becomes difficult when employees present a best-case scenario and treatment doesn’t go as planned.
“We like to encourage people to adopt a language of fluidity,” Nellis says, such as, “ ‘This is what I know right now, and I’d like to be able to keep you looped in so that we can work together throughout.’ ”
Pressure to Perform
When Dan Adams, 63, of Linwood, New Jersey, was diagnosed with early-stage bladder cancer in 2008, he initially told only his supervisor. He shared his diagnosis with co-workers after returning from a week off to have surgery.
Work It Out
Whether you’re working during treatment, taking time off or trying to find a new job after treatment, the following resources can help you navigate the work world.
Cancer and Careers provides support to people who are trying to manage cancer and their career.
The National Coalition for Cancer Survivorship explains how employment discrimination laws can protect cancer survivors.
CancerCare offers podcasts on workplace issues.
Adams, who at the time worked in billing for a utility company, says the tiredness he felt because of his immunotherapy treatments didn’t prevent him from doing his job. He traveled 60 miles from his New Jersey home to Penn Medicine in Philadelphia once a week for treatment with bacillus Calmette-Guérin, a vaccine administered on an outpatient basis. Initially, he wasn’t concerned that his diagnosis would affect his employment.
But when he started to feel slightly irritable and distracted by an underlying sense of panic and, on one occasion, incorrectly billed 10,000 customers, he knew something was off. After that, he made a point to be more mindful on the job and often asked colleagues to double-check his work. He had a long conversation with his family doctor, who prescribed Lexapro (escitalopram) to treat his anxiety. Adams continued to participate in an online bladder cancer community that helped him with the anxiety, and he also discussed it with his supervisor.
“She said she understood it, but I don’t really think she did,” he says. “I believe she thought my anxiety was an issue I couldn’t overcome.”
In 2011, Adams and his wife, Mary Ann, decided to start spending more time together, so he started a new job that was closer to home and offered better health benefits. He also felt that since his billing error, his supervisor had lacked confidence in him.
“I don’t think I ever really recovered the relationship I had with my prior boss,” says Adams, who now supervises a team of program monitors for Atlantic County in New Jersey. “That in and of itself made it easier to move along.”
Working With Your Providers
When Cancer and Careers was founded in 2001, Nellis says, a commonly held view was that people being treated for cancer would stop working.
“It has become much more apparent that the goal should be to help a person do what makes sense for them,” she says.
As more people stay on the job through treatment, Nellis says, work has become a topic for patients and their oncology teams to discuss. She says health care providers need to be aware of the issues cancer patients face in the workplace so they can offer informed counsel. Cancer and Careers offers training on work-related issues for health care professionals.
Morales says if patients don’t understand their rights and don’t talk to their doctors about their desire to work, they might assume they can’t work and decide to take a leave of absence or quit their job. Later, they might regret the decision.
“People have choices, and they can make educated choices if they have all of the information to do that,” Morales says.
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