Many cancer patients and survivors don't realize that they aren't legally required to disclose details about their condition to their employers.
When Joanna Buzaglo was diagnosed with Hodgkin lymphoma in 1988, she was a 28-year-old working to establish herself as a dancer and choreographer overseas. The diagnosis quickly sidelined her career plans and sent her back to the United States, where she underwent chemotherapy in Philadelphia, her hometown.
"I was just beginning my life, I was not quite yet married and I didn't have children – and that was all put into question," says Buzaglo, now 54. "I also felt much more alone because none of my peers had been diagnosed with cancer."
Although her prognosis was grim, Buzaglo survived and eventually found a new calling in clinical psychology, which gave her the skills to support people who are .
Then, it happened again.
A couple years ago, Buzaglo was diagnosed with . Again, she underwent aggressive chemotherapy. Again, she survived. But this time, the experience was much different. Thanks to more targeted therapies with fewer side effects and better medications to treat those, she was able to work the entire time.
"We did not skip a beat in terms of meeting our goals and deliverables," says Buzaglo, the senior vice president of Research and Training at , an international nonprofit that provides support, education and hope to people affected by cancer. "I think that if I had to take time off or take time away, it would have been more difficult for our organization to meet its goals."
While some people don't want to work during treatment or can't for health, financial or other reasons, others find that work can help them maintain their identity or provide a distraction, not to mention supply a paycheck and .
For Buzaglo, working through treatment was not without its challenges, but doing so paid off: It boosted her self-esteem, social connectedness and sense of purpose. "It was much better for me to be able to focus on my work, to have the support of my colleagues and for me not to focus on any of the side effects or my fears," she says. "I [could channel] my energy in a productive way."
A Changing Prognosis
In early 2012, there were 13.7 million cancer survivors in the United States – a number that is expected to grow 31 percent to 18 million by 2022, according to a 2013 American Association for Cancer Research .
"The view of cancer is shifting more toward chronic illness," says Holly Mead, an assistant professor of health policy and management at George Washington University's Milken Institute School of Public Health, who is studying standards of care for cancer survivors. In effect, both the health care system and employers need to shift how they treat patients now that they're "living longer with cancer or surviving cancer, but still really experiencing pretty substantial health and certainly psychosocial issues that are stemming from cancer or their treatment," she says.
For example, some cancer survivors grapple with infertility, fatigue and a sort of brain fog dubbed "chemo brain" for years – or even for the rest of their lives. "Certainly the health care system is trying to keep up," Mead says. "Employers need to be thinking about it in the same way."
When Cancer and Careers was founded 14 years ago, "there was still very much this idea that the whole goal was to help someone take time off. If you could get them out on disability, that's all anybody wanted," says Rebecca Nellis, the nonprofit's chief mission officer. "But in this country, our identity is tied to our work." Her organization focuses on providing people with cancer the resources to help them succeed in their jobs.
That support is necessary: According to from nearly 400 metastatic breast cancer survivors collected for the Cancer Support Community's , a database of about 7,500 people affected by cancer, of the 50 percent of people who left their jobs after their cancer diagnosis, half them did so involuntarily. Even among those who continued to work, 12 percent experienced "involuntary changes to their work schedules," like a reduction in work hours, and about 20 percent reported some kind of job discrimination. At the same time, 46 percent experienced a decline in their ability to work, Buzaglo says.
"If we think that having a job is one of the best predictors of overall health outcomes and quality of life, this becomes very significant," she says.
Bringing Cancer to Work
When Cindy Cisneros moved from Boston to the District of Columbia about 10 years ago, she did not tell her supervisor about her uterine cancer diagnosis, for which she had recently undergone the first of three surgeries.
"Once you tell somebody you're diagnosed, there's actually quite a stigma," says Cisneros, now a 50-year-old nonprofit executive. "I didn't want to be viewed as an employee who was not capable of performing her job, seen as weak and couldn't be relied on to complete her work over the course of the year. I didn't want to chance any other negative implications."
That choice is perfectly legal, although many cancer patients and survivors don't realize they don't have to disclose their condition to their employers, says Joanna Morales, a lawyer and CEO of , a nonprofit that educates and supports cancer survivors, caregivers and health care professionals.
"It can make or break someone's situation if they have an understanding of their rights because so many of these systems – whether it be the employment arena or insurance or disability insurance – it's really antagonistic and it's set up to really keep people from accessing their rights," Morales says. "And it's only the people who are persistent and understand what their rights are that are more likely to get what they need and what they're entitled to under the law."
One of those entitlements is protection under the Americans with Disabilities Act, which in the workplace and requires their employers to provide "reasonable accommodations" such as an altered work schedule or space to allow them to do or return to their jobs. An office worker going through treatment, for example, might experience numbness in his or her fingers and request voice technology that reduces the need to use a keyboard. Another employee whose doctors warn against riding public transit with a compromised immune system might try to work remotely. Survivors with difficulty concentrating might adjust their hours to take advantage of their most productive time of day.
Clarified on May 18, 2015: A previous version of this story mischaracterized the original mission of Cancer and Careers.