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Metastatic Breast CancerBreast Cancer

Is It Realistic to Work While Undergoing Treatment for Metastatic Breast Cancer?

March 2019 Volume 5 – Patient Stories
Lillie D. Shockney, RN, BS, MAS, ONN-CG
26-year cancer survivor
University Distinguished Service Professor of Breast Cancer; Director, Cancer Survivorship Programs at the Sidney Kimmel Cancer Center at Johns Hopkins
In today’s world, most women are working outside of the home, employed in some ­capacity. Whether single, divorced, or married, today’s economy demands individuals to work to be able to pay their monthly living expenses, school expenses for themselves or their children, and other debts that accumulate as we transition from teens to young adults and beyond. There is no particular age anymore that people feel they are truly debt-free. Even retirement is now a moving target, moving in the direction of people working well past their traditional retirement age.

Weighing Your Work

If you have worked most or all your life, then working is part of your normal day-to-day routine, and keeping this going may be a deciding factor for some. Your identity may even be tied to the type of work you do. When we meet someone new, we tell that person our name, and then before you know it, this new person is asking what kind of work you do, and vice versa.

You are not just someone who now has metastatic breast cancer, and this is all you are, with all your previous identities erased. You may be an appointment scheduler for a company that installs security systems, and you are likely married, have 2 children under age 10, and your health insurance is provided through your employer and not through your husband’s. Maintaining your health insurance will be very important for you and your family, especially now.

Other reasons to work during treatment is because you spend an extraordinary amount of time in the workplace. This is also, usually, a place where you have made close friends, which can mean that part of your significant support system is indeed at work. These individuals want to help you, spend time with you, pray for you, and help you in whatever ways will be helpful to you and your family. They also realize that if this can happen to you, it could happen to them, too.

The Treatment Type Matters

So, can you work while undergoing treatment for stage IV breast cancer? It depends on several factors, and the first factor is how your treatment makes you feel.

For those with ER-positive, HER2-negative breast cancer, the treatment may be some form of hormone therapy rather than chemotherapy. Hormone therapy causes side effects that are similar to those common during menopause. So, just as most women work while going through “the change,” as my grandmother used to call menopause, it is also doable for women with stage IV breast cancer who are receiving hormone therapy for their cancer to continue working.

Those with triple-negative breast cancer, however, may be taking very toxic drugs, which makes it more of a challenge to maintain a work schedule. This doesn’t mean that you have to sit at home every day, but it will require a thoughtful discussion with your supervisor about your work schedule, to see what type of flexible accommodations may be possible, so you could work on days you are feeling okay and be home on days you are not.

The treatments you receive will likely have predictable days of illness versus wellness, and this will be evident after your first cycle of treatment. Also talk with your nurse navigator and oncologist about your need or desire to work, so that the treatments can be given on days that can provide you the ability to plan ahead, making it possible that your ill days could fall on the weekends.

What Else to Consider?

Other factors that influence your ability to work include where the cancer has spread to. If the cancer is limited to your bones, then it is more likely you may be able to work part-time or even maintain a full-time schedule. If the cancer has spread to your lungs, liver, or brain, however, this can make it more difficult to be physically and mentally active all day, every day. Your treatments may be harsher in some cases, with lingering side effects that don’t last for only a day or two.

The American Disabilities Act has labeled cancer as a disability. This means you can qualify for the time off under the Family and Medical Leave Act, for example. It also means that you can request reasonable accommodations while at work, to enable you to still do at least some necessary duties that are of benefit to the company you serve.

For example, let’s say that you are working on an assembly line in a factory. Because of your chronic fatigue from radiation, or from other systemic medicines you are receiving, you are simply not able to keep up with the normal speed of that conveyor belt. The solution, however, will not be to slow the entire line down and affect productivity for everyone. Instead, the conversation would steer toward discussing the feasibility of you working in a different capacity for the business.

This may mean a desk job, where you can sit and answer the phone, taking messages or routing calls to the right office. You are still a valuable and productive employee, filling a role that helps you to feel fulfilled, earning your salary, and maintaining your benefits, including your health insurance. It may even be possible, depending on the type of work you do, to work from home. This is often an option for those whose work is computer-based, so you can work in a virtual manner via e-mail, conference calls, skype, and telephone.

Talk Things Through

Sit down with your oncology navigator and discuss what is reasonable to consider from a working perspective. The type of work you do, your enjoyment of that work, who in your family covers health insurance benefits and life insurance coverage, and how dependent you are on your personal salary to make ends meet, can be frankly discussed with your navigator. Also discuss if your best friends are co-workers or not.

Your current working relationship with your supervisor also needs to be known. Some supervisors are incredibly supportive, but others are not. Of course they need to make sure the work gets done correctly and on time, but you are not the only employee they have ever had, or will ever have, who is battling cancer. Statistically, 1 in 3 women will be diagnosed with a life-threatening cancer in their lifetimes, and most of them will be working when it happens.

It Will Be an Adjustment

You may be asked odd questions from co-workers too. If you still look quite healthy, someone in the workplace may challenge you as to whether you really do have stage IV breast cancer. (Yes, this happens!) This is because of ignorance. With the improved treatments available today, and with more and more women living for years in harmony with their metastatic disease, people are confused, because their knowledge-base of stage IV cancer, no matter what kind, is that the patient would look like death warmed over. What they envision is someone with hair loss, who is very thin, walking slowly, fatigued, and needing to be horizontal most of the time.

This requires a thoughtful dialogue, in which you educate such individuals so that they know that stage IV disease is different for each person who is unfortunate enough to be diagnosed with it. Some are very ill from the beginning and don’t survive very long; others may live years with the disease and be able to continue working for years. The most important person to make this information clear to will, of course, be your supervisor.

So, meet with your HR person to find out what are your benefits related to short- and long-term disability, vacation time, sick time, or PTO, as is the case in most businesses today. What reasonable accommodations you may need now, or in the future. Then, sit down with your boss for the first of a series of discussions, because your clinical situation will likely change over time.

This is a fluid process you are going to be experiencing—feeling quite well one minute and not so much next week. Make sure your boss knows that you understand the importance of the company continuing with its business as usual, and that you want to be as productive as possible for the company, given your current clinical situation. Meet regularly.

Finally, you are not required to disclose that you have cancer; but you are required to say that you have an illness that will require treatment. However, the more information you are able and willing to provide to your employer, the easier it will be to request and receive reasonable accommodations.

See you at work!

Key Points

  • Tell your oncologist and nurse navigator that you would like to work, so they can coordinate a convenient treatment schedule
  • The American Disabilities Act has classified cancer as a disability, which means you can qualify for leave under the Family and Medical Leave Act
  • You can also request reasonable accommodations at work
  • Be ready to meet people who have preconceived ideas about what a person with advanced cancer should look like
  • Meet with your HR person to find out what benefits you are entitled to, such as short- and long-term disability, sick time, vacation
  • You are not required to disclose at work that you have cancer, but do need to disclose that you have an illness that requires treatment
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Last modified: April 18, 2019

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