How to Talk About a Metastatic Breast Cancer Diagnosis at Work

Managing metastatic breast cancer (MBC) can feel like a full-time job in itself. But if you — like many people living with MBC — are working, it can be hard to balance your personal and professional life.

Deciding if and when to tell the people you work with about your condition is personal. How you approach it will depend on a variety of factors, such as what accommodations you may need to do your job, what kind of relationship you have with your boss and coworkers already, and how your state handles disability issues.

In the United States, most people are not legally required to tell their employer about a medical condition. So, it’s your choice what you do and don’t share about a diagnosis. 

Ask yourself: Do you want to continue to work? If the answer is yes, at some point you may need to talk with your employer about reasonable accommodations (for example, more breaks during your shift or a flexible schedule) so you can work during treatment. You may be asked to provide a medical certification from your doctor verifying why you need the accommodation, but these forms don’t need to list your diagnosis.

If you can’t work, review the options you have to take time off. You may be able to use sick, personal, vacation time, or disability benefits received through an employer. You should also look into state disability insurance, or federal programs such as Social Security Disability Insurance or Supplemental Security Income. “All of those have different standards of disability and different benefits and ways to qualify,” says Joanna Fawzy Doran, Esq., a cancer rights attorney. Doran is the CEO of Triage Cancer, a national nonprofit organization that helps to educate people with cancer and their caregivers about legal and practical issues they may face. 

Before you speak with anyone at work about your health, determine what you need and whether telling anyone makes sense for you. 

Some people — such as Breastcancer.org Community member JFL — choose to keep their health status to themselves. “I don’t share my diagnosis because I do not want to be written off professionally or personally, taken off of a career path, and treated with kid gloves like someone who is dying and beyond all hope. Thus, I remain in the closet about my diagnosis for the most part.”

But others have found sharing the information to be helpful. Community member Shutterbug73 says she had worked at her job for six years when she was diagnosed with MBC. “I chose to tell my boss and asked that she tell everyone in my department. I have a very busy job, and I take pride in staying on top of things. I wanted everyone to know why I wasn’t at the top of my game,” she said. “They were wonderful. I used my regular time off to get me through the hard days of chemo. My boss allowed me to work from home and encouraged me to take more breaks … I threw myself into work as much as I could. It gave me a sense of normalcy, and it was the first place that I would forget about cancer.”

As you consider who to tell at work, if anyone, research your options. Cancer+Careers provides expert advice on how to have these conversations in the workplace, including how to talk to your manager. 

There’s a good chance that the people you work with won’t know much about metastatic breast cancer. For instance, they may not understand that MBC is an illness that requires ongoing care or that some people with MBC can continue to work with minor changes.

It’s important to be aware of common misconceptions about MBC you may encounter at work, says Roz Kleban, LCSW, a clinical supervisor and program coordinator at the Breast Center at Memorial Sloan-Kettering Cancer Center in New York. 

Help your manager understand what you need, says Doran. “The thing you want to leave them with is that you are capable and can do the job with or without reasonable accommodations.”

When you know what you need for accommodations, understand your rights under both federal and state law and know your employer’s policies. That way, you can come up with a plan even before you talk to anyone, suggests Doran.

“Understand how to match your rights with your goals,” she says. “The Americans with Disabilities Act (ADA) and state fair employment laws that protect you from discrimination in the workplace and give access to reasonable accommodations.”

Choosing to share your health information is personal, and you’ll have to decide what’s right for you.

“Some people don’t have qualms at all, but we do know that discrimination exists,” says Doran. “Claims are filed all the time, but we think it’s underreported. When it comes to employment discrimination, it’s a difficult path for people to pursue legally, because they have to prove discrimination.”

Because of these concerns, it’s important to know you have choices about your privacy and that you can make conscious decisions about the information you disclose.

“Generally, disclosure of a medical condition isn’t required unless someone wants access to legal protections, such as accommodations under the ADA or medical leave,” says Doran. “You need to share enough information about a medical condition to show you are eligible, but you don’t need to specify a cancer or a metastatic cancer diagnosis.”

Instead, reporting any side effects you’re experiencing from breast cancer treatment may be sufficient to qualify for these protections.

“Most of the time, medical leave isn’t for the cancer diagnosis, but for a side effect from treatment,” says Doran. “Side effects are often medical conditions on their own. This can be talked about on certification forms without ever tying the leave back to a cancer diagnosis. This can provide a bit of cover for privacy.”

Triage Cancer offers a Quick Guide to Disclosure, Privacy, & Medical Certification Forms, which gives additional guidance on how to ensure that healthcare providers maintain the level of privacy you want when preparing forms that employers will see, as well as other related information.

It’s important to know what accommodations you can ask for at work and how the ADA can help.

“With respect to accessibility, first think about what is posing a challenge for you at work,” says Doran. “And then think about what your job responsibilities are, and what are the types of accommodations that could actually help you address those challenges.”

The ADA is written broadly, and Doran urges people to think broadly, too.

"Come up with a list of things that could be helpful, such as a potential challenge and a list of several solutions — this is more proactive,” she says. “The employer just wants to get the work done. If there is a potential problem, having the employee present several possible solutions shows a good-faith effort that the employee wants to be part of the solution.”

The Job Accommodation Network has information about how to ask for the accommodations you need. 

Some people are lucky that their employers are accommodating and eager to help. As Breastcancer.org Community member pajim says, “The ethos where I work is, ‘We’ll support you to the end.’ And I’ve seen them do it for two others. They will do it for me. In exchange, I’m as honest with my direct boss and the head of HR as possible. For instance, I told them both last year that I was on the last treatment before IV chemo, and I expect that IV chemo will interfere with my ability to do my job. Their response was, ‘What do you need?’ I realize I am luckier than I can imagine.”

Unfortunately, others sometimes face challenges with obtaining reasonable accommodations at work, such as Community member Lumpie.

Even though Lumpie scheduled her surgeries and doctor’s appointments on days adjacent to weekends to minimize time off, she says she was reclassified as part-time even though she was working full-time. “This reduced my access to benefits, although I was able to keep health insurance, which has been critical,” she says.

She also says she was denied pay rate increases awarded to other staff. “I was told explicitly that it was because I was less valuable since I was treated for cancer and did not deserve the increase awarded to all other staff members,” she wrote. “When I needed more treatment, I was told that my department had done enough for me and that I had 30 days to find a new job.”

If you request reasonable accommodations and find that your employer isn’t being supportive, it’s important to know your rights.

“If an employee is eligible for protection under the ADA or state fair employment law, the only excuse for an employer to deny accommodations is if it poses an undue burden for the employer, or a direct threat to the employee or others,” says Doran. “It is supposed to be an interactive process and a negotiation as to what accommodations get chosen, implemented, and monitored.”

But if you are told that none of your requests for accommodations can be provided, it may be time to find an attorney. “It’s a legal issue,” says Kleban. “If they are unaccommodating, the [person] needs to see if they are protected under the law.”

If you feel you need to seek legal assistance to deal with an unaccommodating workplace, Triage Cancer has resources that can help, Doran says.