Metastatic breast cancer and the workplace

Your job and your career path may be very important to you for financial and personal reasons. It’s normal to worry that a metastatic breast cancer (MBC) diagnosis could affect your ability to work and earn a living. Continuing to work after an MBC diagnosis can have many benefits, including:

• Helping you feel a sense of normalcy again
• Giving you the opportunity to earn needed income
• Allowing you to get your mind off medical issues
• Helping you maintain your social and professional contacts
• Helping you keep health insurance coverage
• Supporting your career involvement

While there can be a lot of good things about working after an MBC diagnosis, staying in the workforce can also be a challenge.

The information below can help you understand and navigate the workplace more easily.

Working during cancer treatment

If you decide you want to work during treatment, let your doctor know. Your healthcare team can provide guidance on how to prepare for working through treatment. For example:

• They may encourage you to schedule short rest breaks throughout your work day.
• They may recommend you keep a journal so you can track and remember important details, such as to-do lists and meeting notes.
• They can help you coordinate treatment days around your work hours so you can come up with a plan that works for your schedule.

If you’re planning to return to full-time work after an absence, ask your employer if you can start by working a few partial days before getting back to full time. This can help you measure your strength and adapt to any changes in the environment.

If you spent time away from work, ask coworkers you trust to help you with any adjustments you may need to make, or any new information you need to learn. Ask if they can help you catch up on new systems or procedures set up while you were gone.

Sharing information about your diagnosis at work

It’s hard to know how, when, or whether to disclose MBC diagnosis in the workplace. No matter how long you’ve been in the workforce, what you share is up to you.

At work, you have a right to privacy. You don’t have to give out personal information if you don’t want to.

Telling your boss or supervisor

How much to tell your boss or supervisor is one decision you may have to make. You are not obligated to tell your boss the details of your medical condition. You may find it helpful to give a general sense of what is going on, especially if you are going to need time off work or flexible hours to go to doctor appointments, treatments, and testing.

Check with your human resources (HR) department or your employee manual about what you are entitled to as far as sick days, vacation, paid time off, and medical and unpaid leaves in case you need them for treatments and recovery.

If you can continue to perform the essential duties of your job and you work for a private employer with 15 or more employees or a covered organization or agency, you may ask for “reasonable accommodations” under the Americans with Disabilities Act (ADA).

There are also some state and local laws governing medical-related time off.

It’s unlikely you are the first one in the office to have a major medical issue. Your HR department is there to help explain your company’s benefits to you.

Don’t hesitate to seek out advice from your healthcare team, accountant, financial advisor, and/or attorney as you make decisions related to work, medical leave, and disability benefits.

Managing relationships with coworkers

Everyone’s experiences and relationships at work are different. You may have known your coworkers for years, or only a few months. They may be some of your closest friends, or they may feel like just people you work with.

Consider whom, if anyone, you want to tell about your diagnosis. Keep in mind that your coworkers are not required to protect your privacy.

While sharing your diagnosis can mean your coworkers may give you extra support at work, it could also disrupt your day-to-day work life if, for instance, if coworkers ask a lot of questions about your health or your treatment. Figure out what feels right to you before you decide whether or what to share — and with whom you feel comfortable sharing it.

As you go through treatment, you may find it useful to establish boundaries by keeping conversations focused on work. You’ll likely appreciate having a good chunk of time when you’re seen as a professional and not a patient.

Again, you are not required to give updates or reveal details if a coworker asks how you are. If someone persists in seeking out personal details, you can always smile and say something like “Thanks for asking. Now where were we?”

Your rights and legal protections in the workplace

Just like anyone, you have legal rights in the workplace and the right to be given equal opportunities. You can’t be fired based on your medical condition.

You may also be able to move to a part-time schedule for a limited time or take off a few days a week through the Family and Medical Leave Act (FMLA) without the threat of losing your job or health insurance benefits. Not all employees are covered under these laws; it depends on the size of your employer and other factors.

If you work for a private employer with 15 or more employees or a covered agency or organization, and you are eligible, you may ask for “reasonable accommodations” under the ADA. These include shortened hours, modified work schedules, or reassignment to an open position. State or local laws may also protect you.

Employee Assistance Programs can help you manage personal issues that may affect your job performance, such as emotional and financial concerns.

Talk to your human resources representative to find out what your options are and if benefits are available. You can also visit the Job Accommodation Network for more information.

If you think your rights at work may have been violated, resources are available to help at the U.S. Department of Labor’s Wage and Hour Division.

Disability policies and taking time off

When illness prevents you from being able to work, short-term and long-term disability insurance policies can help.

Short-term disability policies:

• Provide 40% to 70% of your base salary
• Are not required by law to be offered, although many employers do offer them
• Can provide coverage for approximately 3 to 6 months
• Do not protect your job; allowing you to come back to work is determined by your employer’s policies and state and federal laws, such as FMLA and ADA

Long-term disability policies:

• Provide wage replacement for 50% to 70% of your wages
• Are not required by law to be offered, although many employers do offer them
• Do not protect your job
• Provide coverage that begins once short-term disability coverage ends
• Can sometimes provide coverage that lasts until your normal retirement date or until you become eligible for Social Security Disability Insurance benefits, although some policies are more limited and may end after 2 to 3 years

Talk to someone who works in your employer’s human resources department to learn more about whether disability insurance is available. If your employer offers this coverage, it’s important to review the benefits and limitations of each type of policy.

For more information about these laws and the state laws and resources that may be useful to you, visit Triage Cancer or Patient Advocate Foundation.

A complete overview of Work accommodations and disability insurance and benefits is available on our website. One of the programs discussed on that page is Social Security Disability Insurance.

State Disability Insurance

Five states offer short-term disability insurance. They are California, Hawaii, New Jersey, New York, and Rhode Island. Puerto Rico also offers short-term disability insurance. Details and coverage vary by state/territory.

Social Security Disability Insurance

Requirements for Social Security Disability Insurance (SSDI) are based on a system that considers a person’s last 5 years of work history and being out of work (or expected to be out of work) for at least 1 year due to a disability, as defined by the Social Security Administration (SSA).

The application process usually takes 3 to 5 months and in some cases may take longer, so consider applying as soon as you are unable to work.

If you are approved, you will not receive benefits until the sixth month of full disability. If your application is denied, you may appeal the decision.

After 2 years on SSDI, Americans are eligible for health coverage through Medicare.

SSDI and metastatic breast cancer: Compassionate Allowances List (CAL)

Some serious conditions and disabilities, including metastatic breast cancer (MBC), are included on an SSA list of Compassionate Allowances. This means if you have been diagnosed with MBC, the application review process for eligibility for SSDI benefits may be quicker. Keep in mind, having a condition on the CAL (including an MBC diagnosis) is not a guarantee of approval.

Challenges to SSDI waiting periods

The 5-month waiting period before people receive SSDI benefits and the 2-year waiting period on SSDI before becoming eligible for Medicare coverage have been challenged by metastatic breast cancer (MBC) and other advocates and lawmakers. At least four bills have been introduced in Congress (as of 2024) that aim to shorten or remove these waiting periods for some or all applicants:

• The Metastatic Breast Cancer Access to Care Act would exempt people with MBC from these waiting periods.
• The Stop the Wait Act would phase out waiting periods for people with disabilities.
• The Immediate Access for the Terminally Ill Act would remove waiting periods for people with a life expectancy of less than 5 years.
• The Social Security 2100 Act would make changes to Social Security, including the end of the 5-month waiting period for SSDI benefits.