When Lisa Vento Nielsen was diagnosed with metastatic breast cancer at age 39, she was shocked. As an eighth-grade teacher and mom to two young kids, she struggled to absorb all the information about what was ahead—radiation, chemotherapy, doctor appointments, and numerous tests—but she also dreaded having to tell her principal, fearing that her work life was about to collapse.
“I feel there’s such a stigma around being sick,” Nielsen says. “I actually felt ashamed when I was diagnosed, as if I’d done something wrong. That made it more difficult to talk about.”
Although she worked throughout her treatment, Nielsen’s contract wasn’t renewed for the subsequent year, and it felt devastating.
“Work is part of our identity,” she says. “With cancer, you have to come to terms with who you are in a different way. I believe that’s true, no matter what kind of work you do.”
Nielsen is far from alone when it comes to facing work issues after a diagnosis. Although every workplace is unique in terms of culture, support, and resources, there are some steps that anyone with newly diagnosed metastatic breast cancer should consider before and after having “the conversation” with HR and supervisors.
1. Understand your timelines
To put together as much information for your employer as possible, talk to your medical care team about likely timeframes when it comes to surgery, chemo, or other treatments, according to Liz Nikol, a behavioral health therapist at Summit Medical Group in New Jersey who had breast cancer herself at age 29. Drawing on her skills as a former HR professional, she now counsels patients about work transitions as well as mental health challenges.
“The initial timeline of treatment may change as you begin to be treated, but at least it gives you and your employer a starting point,” she says. “That can also be helpful emotionally; it can give you a sense of stability at a time when everything feels in limbo.”
2. Be open to a different path
Another step before talking with your employer could be taking a hard look at whether you want to continue in your current job, Nikol advises.
“For some people, working is a great counterbalance to treatment; it makes them feel good,” she says. “For others, especially if they don’t really like their work, maybe this is a good opportunity to take some time off and consider the career path they really want.”
For example, rather than look for another teaching position, Nielsen decided to found a nonprofit called Career After Cancer, focused on helping people with cancer get back to meaningful work through online courses and in-person training. Based on her experience, she wants to help others with issues like interviewing, “chemo brain fog,” job loss, resume gaps, and work identity.
3. Be realistic about balancing work and treatment
Depending on your treatment plan and work responsibilities, you could end up taking surprisingly little time off, says Nikol. But that doesn’t mean you should count on that being the case.
“Be honest about how this diagnosis and the treatment will potentially affect you,” she says. “You may need to come back on a limited basis, or to take weeks off after a surgery.”
Also, she adds, understand that treatment may have short term effects on your focus, memory, and analysis skills. If your work depends heavily on those kind of skills, Nikol suggests re-evaluating your work plan after a few treatments.
4. Know your rights and keep documentation
If you work for a company with over 50 employees, it must follow the Family and Medical Leave Act, which mandates that you have 12 weeks unpaid time off, and that you come back to the same position or one that’s similar in terms of responsibility.
In addition, it’s helpful to look through an employer’s policies regarding medical leave, according to Mark Marsen, a member of the HR Disciplines Expertise Panel at the Society for Human Resource Management, and an HR professional for a non-profit health care organization.
When you approach your company about your diagnosis, he suggests talking with HR first, since that can get the documentation process started. Some companies will use a third-party firm that handles short-term disability approvals, which may require more paperwork.
“It may feel cold and sterile to have to fill out all these forms, but the more documentation you have, the better,” says Marsen. “Ask questions, get clarity about what the policies are, what the expectations might be, and get it all in writing. That helps to protect you and the employer and removes ambiguity.”
5. Draw on employer resources
Many companies and organizations, especially larger ones, may have health resources that can be beneficial. For example, there are wellness programs that could tie in with your cancer nutrition goals, or employee resource groups that connect you with others who have been diagnosed with cancer.
“It’s possible your workplace may be another source of support for you,” says Nikol. “That’s important, because once you move past the initial diagnosis and first rounds of treatment, the friends and family who were there for you may start to go back to their lives. It can feel like a lonely transition. But if you have workplace resources to fill in that gap, it’s very helpful.”