After fighting for their lives, many cancer survivors are left fighting for their livelihoods.
Erika, 29, from Los Angeles has been battling cancer and dealing with treatment side effects off and on for almost nine years.
“I’ve worked for several different companies, some of which were very willing to work around my treatment needs and others…not so much,” Erika, who asked to withhold her last name, told Moneyish.
Supervisors at one wouldn’t let her work remotely because they said it showed favoritism, for example. “Over the course of about a month of me trying to schedule appointments around a regular work day and taking the passive-aggressive comments from my manager about needing to leave early to go to treatment (ignore the fact that I would come in early to make up for it,) I decided the stress wasn’t worth it,” said Erika, who has since moved on to a more supportive company that lets her work from home or while she’s in the hospital.
“Having cancer is enough to make someone feel like an outsider and a burden to others – but add the stress of feeling like you’re fighting your employer on top? I decided to move on,” she said.
Courtlandt Long, 31, from Brooklyn, whose job entails helping people with chronic conditions at Healtheo 360, knew her company had her back. But she was still surprised by the toll her breast cancer treatment has taken on her.
“Chemotherapy didn’t affect me as much – besides losing all of my hair – but I suffered a lot of fatigue going through a month of radiation therapy,” she told Moneyish. Now she’s taking chemotherapy pills twice a day. She credits her job for allowing her to work remotely on her laptop during her doctors appointments and letting her rest in a conference room or on an office couch when she needs a break in the afternoon.
“Thankfully, they were willing to accommodate me,” she said. “And I would try to schedule my appointments for early in the morning, so I would only be a couple of hours late for work and then I would catch up later in the afternoon or on the weekends.”
Samantha Watson, 39, a two-time young adult survivor from Boston, was first diagnosed with bone cancer her senior year of college and then developed blood cancer from her chemotherapy a year later.
“I was fortunate to have a year between my last treatment and starting work because there were some days immediately after treatment that I couldn’t even get out of bed,” she told Moneyish. She has since started The Samfund nonprofit to provide direct financial assistance and free online support and education to young adult cancer survivors. “Cancer survivorship is really tricky because once you’re done with treatment, you’re supposed to be ‘fine’ – but nothing is ‘fine,’ not for a long time sometimes,” she said.
Yet more Americans including John McCain, who returned to the Senate just a week after his brain cancer diagnosis, want to keep clocking in during treatment. In fact, seven million out of 15 million cancer patients and survivors in the US are still working, according to data compiled by Dr. Cathy Bradley at the University of Colorado Cancer Center.
“Being in the workforce is critical because your job ties into your sense of self, it’s a social connection and it’s also a distraction from your cancer because it reinforces a sense of normalcy,” Bradley told Moneyish.
And perhaps more importantly, it’s the source of income and health insurance essential to paying for treatment. Even patients with good coverage can get hit with thousands of dollars in out-of-pocket costs, The Pink Fund recently reported in time for Breast Cancer Awareness Month, with 64 percent of women diagnosed with breast cancer on the hook for $5,000 to treat the disease and one in five dropping between $5,000 to $10,000. And 36 percent of those surveyed lost their jobs or were unable to work due to a disability stemming from their treatment.
The Family & Medical Leave Act (FMLA) provides employees with up to 12 weeks of unpaid, job-protected leave per year. It also requires that their group health benefits be maintained during the leave. But federal law does not require employers to provide paid sick leave.
“Low-income patients, in particular, are vulnerable to job loss and what we think is driving that is lack of sick leave and lack of accommodations on the part of the employer,” Memorial Sloan Kettering medical oncologist Dr. Victoria Blinder told Moneyish.
Her research has found that only 57 percent of low-income minority breast cancer survivors kept their jobs after treatment, compared with 98 percent of non-Latina white women. Part of that is because low-income shift workers are easily replaceable.
While the Americans with Disabilities Act entitles cancer patients to “reasonable accommodations” at workplaces with more than 15 employees, what constitutes that is not clearly defined. And if an employer can say such accommodations cause their company harm – it drives their health insurance premiums too high, or they can’t afford to be without that staffer for the length of his or her treatment – it doesn’t have to offer them. Businesses with less than 15 employees are also exempt.
When career coach Kathy Flora told her boss she had breast cancer in 2004, he told her, “My wife had to stop working during her cancer treatment, so you should, too.” Yet she worked from home, which enabled her to perform while she recovered from a double mastectomy and chemotherapy.
“There’s this stigma that all people who have cancer are dying and you don’t have the same skills set and same capabilities as you did before, which isn’t true,” Flora, 64, from Bradenton, Fla. told Moneyish. “Coworkers are nervous about whether or not you’re still going to pull your weight. Cancer exhausts you, it’s true, but you can still contribute. And I wanted to work.”
Months later, she found that dropping the C-bomb during job interviews was also a deal-breaker. ‘Once I had a great first interview and then during the second round I let slip that I had just completed my cancer treatment and within a minute the interviewer ushered me to go have lunch with his secretary,” said Flora. She didn’t get that job, but she found others and is now a volunteer career coach for the Cancer and Careers nonprofit, which guides employers and employees through working during and after cancer treatment.
It’s even created a free toolkit for managers with step-by-step instructions for supporting employees affected by cancer at WorkplaceTransitions.org.
And Blinder’s research shows that women with accommodating employers are more than twice as likely to hold onto their positions as those whose employers were not sensitive to their needs. And these accommodations are often much less invasive and expensive than you think.
“I had one patient working at a post office, for instance, who was only allowed one break per day – and adding just one extra 15-minute break was all she needed to feel so much better,” Blinder said.
Or some patients undergoing chemo get nauseated by strong smells, but simply relocating their desk or cubicle away from the office kitchen or bathroom can provide relief, as well as asking coworkers sitting near them not to wear perfume.
Blinder had another patient suffering fatigue and tingling in her feet who wasn’t allowed to sit at all at her job, so she wrote the employer a letter explaining her patient’s residual symptoms. “She was provided with a stool, so she could sit and still continue to work with customers and not be bothered by those painful side effects,” said Blinder. “These are relatively minor things that employers can do that can make such a big difference.”
Problem is, there’s no one-size-fits-all solution to working through treatment and beyond.
“A person’s work circumstance and best path forward after a diagnosis is as unique as his or her treatment protocol. There are just so many variables that make each experience totally one-of-a-kind,” Rebecca Nellis, Executive Director of Cancer and Careers, told Moneyish.
That being said, there are some ways that employers and coworkers can help cancer survivors get back into the daily grind.
Ashley Thompson, 38, a San Antonio single mother who developed kidney cancer six years ago, found that a flexible schedule and working from home made all the difference. “Having cancer is a job in addition to your job: You’re keeping track of the doctor’s appointments, the chemotherapy and radiation appointments, the billing and the insurance, the medication schedule – it’s overwhelming,” she said. “Luckily I mostly worked from home, because I was so exhausted. I don’t know how I would have gotten through it otherwise. And it doesn’t matter exactly which hours I work (like 9 to 5 or 11 to 7) as long as I get my work done.”
Arming yourself with a plan for working through cancer can get your supervisor on your side. Once you’ve got your treatment mapped out with your doctor, you’ll go a long way toward convincing your boss to accommodate your needs if you can show that you’ve thought about how to make this work for them, too. During the weeks where you spend a day or two at chemo, offer to make up the work over the weekend, or show how you can split projects with coworkers. “Give as much heads up as you can on your treatment schedule, but also let them know that chemo is not always cut-and-dry and you may have some unanticipated hospital stays,” said Erika.
And tell your oncologist that you need to work and what your job entails, so that you both can find a course of treatment that lets you stay on the job. Speak up if your side effects are crippling your productivity, since there may be medications to mitigate that discomfort. And your oncologist can also write letters to your employer pushing for workplace accommodations.
But be careful in disclosing your diagnosis. Flora suggests going straight to the HR department if you’re at a bigger company first and then bringing someone from HR (or another trusted colleague) with you when you tell your direct supervisor about your condition. “You want to make sure there are no misunderstandings,” she said. Plus, HR can help you navigate your medical leave policy and upgrade your insurance coverage if needed.
“And if you’re in job search mode, there’s absolutely no reason on earth that someone needs to know that you’re in the midst of cancer treatment or survivorship – or any other medical condition,” Flora added, “because cancer doesn’t change who you are, it doesn’t change your skills set, but it can cause people to be afraid of you if they don’t understand.”
You can still ask for flexible hours or the ability to work from home without sharing your medical history, which is what Thompson did when interviewing for her current gig at the Educational Testing Service, which lets her work from home and adjust her hours as needed. And once she came out to them about her survivorship, they were so supportive that they even let Cancer and Careers film a video with her in their offices.
“With work and with treatment, you have to push for what you need and keep searching until you find it,” she said.