Working While Living With Metastatic Breast Cancer

Receiving a metastatic breast cancer diagnosis can be frightening. As the most advanced stage of breast cancer, this is when cancer cells have spread to other parts of your body like your lungs, lymph nodes, bones, brain or liver.

That kind of unexpected news about your health has the potential to stop everything in its tracks. If it makes you want to put work on pause until you figure out your treatment plan and what your future will look like, you’re not alone in that feeling.

“Metastatic breast cancer is treated more like a chronic medical condition where you tend to remain on some form of treatment indefinitely,” says care coordinator Nancy Dalpiaz, RN, BSN.

But Dalpiaz quickly notes that the decision to work or not work is a personal matter, and many people choose to keep working despite their diagnosis.

“Working can give you a sense of purpose. It gives you a reason to get up every day, get dressed and get moving,” she says. “It serves as a great distraction.”

Dalpiaz walks us through how to navigate work, what modifications you may want to make and the benefits of keeping your job, along with what you can do if you need to step away from work, at least for a little while.

Can you work with metastatic breast cancer?

You can, but whether you choose to after receiving a diagnosis or while you’re receiving treatment is entirely up to you.

“There isn’t a one-size-fits-all answer,” says Dalpiaz. “It’s best if you talk things over with your care team about potential side effects of the treatment you may experience. Your team can also guide you on how they think you might tolerate treatment. And it’s also important to discuss your decision with your family. There are always options to continue with your career. But it’s important to identify what is important to you.”

For example, you may have a goal of reaching certain milestones, like going on a family trip or seeing your child graduate or get married — and work and your career may not be as important to you as making the most out of those other memories.

But for others, working can bring a sense of fulfillment and purpose. It can be the driving factor for a lot of people who’ve received a diagnosis because it gives them something to focus on and look forward to. Often, some of the most important things you can do are try to stay positive and maintain some sense of normalcy as you’re going through cancer treatment. Doing so can sometimes have positive effects on patient outcomes.

“You want to maintain as much normalcy as possible,” reiterates Dalpiaz. “Try to do your normal activities. You may have to make modifications due to side effects. But I find that people that continue to work do better overall with treatment.”

Some people choose to work because it also provides a much-needed distraction at an otherwise difficult time in their lives. But it also provides some other real-world payoffs in the form of health benefits and insurance coverage that you might need as your cancer treatment progresses.

How does breast cancer limit your ability to work?

With metastatic breast cancer, there is a variety of treatment options. Depending on the type of treatment you have, you may experience some side effects that can have a negative impact on your usual capacity to get work done. Some of these side effects can include:

• Fatigue.
• Nausea.
• Muscle pain and bone pain.
• Constipation and diarrhea.

And as treatments will be ongoing, you may want to make a few modifications to your work life based on how you’re feeling and what symptoms you’re dealing with.

Considering job modifications

“A lot of your decisions are going to come from knowing your body, knowing how you’re going to feel and knowing what you can and can’t do,” says Dalpiaz.

If you have a physically demanding job or are on your feet for most of your workday, you may want to talk to your boss about modifications like the option to take more breaks, especially when you’re experiencing nausea or feeling weak.

“We have a lot of workflow flexibility in the world today,” notes Dalpiaz. “Employers may be able to offer alternative work models like remote work, part-time/hybrid models or compressed work weeks, depending on your situation and what’s available at your company.”

Other modifications can include:

• Moving your desk closer to a restroom if you have a sedentary job.
• Adjusting your schedule to fit the hours that best suit your current abilities.
• Moving to a shorter work week to adjust for days you’re receiving treatment.
• Connecting you to employee assistance programs and services.
• Reassigning your role or changing positions without causing undue harm.

“A lot of people worry that they could be discriminated against in the workplace,” recognizes Dalpiaz. “But it’s unlawful for them to lose their job due to a cancer diagnosis.”

In the U.S., the Americans with Disabilities Act (ADA) requires private employers and state or local government employers to make reasonable accommodations for employees who need them. So, you shouldn’t need to quit your job if you don’t want to. Your employer and human resources department should work with you to make the proper modifications you need to get the job done.

Eligibility for disability

If you have metastatic breast cancer, you can’t be legally discriminated against or fired based on your medical condition. But you may be eligible for short-term and long-term disability should you need it through your employer.

Short-term disability can typically be up to 90 days, while long-term disability can be more than 90 days.

“A lot of times when you start treatment, you’re not sure what your side effects will be or how you’re going to react to the treatments,” says Dalpiaz. “You might want to take time off to just see how you’re going to feel.”

This can also help with peace of mind when it comes to scheduling appointments, testing and treatments. Many care teams can help navigate the world of paperwork with you, helping you fill out the necessary forms and giving you information on what options are available.

“I encourage anyone with metastatic breast cancer to apply for the Family Medical Leave Act (FMLA),” says Dalpiaz. “This allows people to keep their job, but to be able to take off a certain period of time or intermittently for treatments.”

Should you share your cancer diagnosis with people at work?

There’s no right or wrong way to navigate this conversation, should you decide to have it. How and what you choose to communicate with your boss and colleagues at work is up to you. It’s all about what you’re comfortable sharing and who you want to share it with.

If you want to apply for FMLA or other workplace modifications, keep in mind that those will need to involve discussions around why those changes will be needed — but you’re in the driver’s seat.

“This is a very personal decision,” emphasizes Dalpiaz. “It depends on the relationships that you have with your boss, employer and colleagues — and also how well you’re tolerating treatments.”

Talking about your diagnosis with your boss vs. your coworkers

These conversations can be shared with just your supervisor, your close friends at work or with your teams at large depending on your level of trust and comfort.

Some people prefer to inform their managers right away. This allows you to come up with a plan and open the door for conversations around what you might want or not want in terms of physical, mental and emotional support, as well as what your expectations are when it comes to your role at work.

In some cases, people might prefer to share this information with only a select few coworkers they feel closely connected with because it allows them to show up for you in big and small ways.

But others may choose not to say anything unless their diagnosis and treatment start affecting their work — and that’s OK, too. This is your journey, and it’s up to you how you wish to navigate it.

If you’re unsure of what the best course of action is, you can always talk it through with your care team or go to a trusted family member or friend for advice on sharing your diagnosis.

Regardless of your decision, Dalpiaz does recommend talking to your human resources representative because they’ll have any necessary paperwork for FMLA and short-term and long-term disability, and they can discretely answer any questions or concerns you may have about the process and what’s available.

Things to do if you choose to stop working after receiving a metastatic breast cancer diagnosis

Not having a job can be difficult, especially if you put so much of your life’s work into your career. And if you have kids or a family that you’re caring for, a lack of income can be a real stressor.

If at any point you choose to stop working, it’s important that you continue to surround yourself with people who care about you and that you take the steps you need to take to ensure your safety and survival while you’re living with metastatic breast cancer. This list, while not all-encompassing, can be a good place to start:

• Apply for federal Social Security programs that offer disability benefits.
• Research financial assistance programs through the Cancer Financial Assistance Coalition and other nonprofit organizations to help with financial difficulties.
• Stay connected to close co-workers, friends and family, and keep up with social activities that spark joy in your life. These social connections can provide mental health benefits that go a long way to making sure you know you’re not alone in your journey.
• Connect with mental health services by working with a social worker and finding a therapist or other healthcare provider who can help you through these lifestyle changes.
• Join a cancer-related community group that provides support and networking opportunities with other people who are or have been where you are today.
• Find something you love — art, yoga, mindfulness and meditation — and do it with full intention.

Many people choose to keep working after receiving a metastatic breast cancer diagnosis, while many others choose to quit or retire. Choose whatever option is best for you and feels right.

“You should not put your life on hold after being diagnosed with metastatic breast cancer,” advises Dalpiaz. “There are a lot of treatment options available. Whether you decide to continue working or not is a personal decision. What is most important is to continue to live, make those memories and spend time doing whatever brings you joy.”