Listen in on any online support group for people with advanced breast cancer, and you will find an amazing diversity of attitudes about leaving or maintaining employment. Some people want tips for how to manage cancer treatments and their jobs—others want to know how to get long-term disability. People work for money, but they also work because they find their jobs meaningful. How do you manage your work-cancer balance—and when should you decide that it’s all too much?
The journal Cancer published research in February 2016 about metastatic cancer patients and their employment. Amye J. Tevaarwerk, M.D., of the University of Wisconsin-Madison Carbone Cancer Center and her research colleagues found that 44 percent of the 668 working-age people in their study continued in their jobs. This number is similar to what Musa Mayer found in an online survey with metastatic breast cancer patients she did in 2006 and included in Silent Voices.
Working with symptoms
The survey found that one main factor determining whether people continued to work was the degree of symptoms they experienced. Those with higher levels of nerve pain, fatigue, memory issues, and drowsiness were most likely to stop work. One metastatic breast cancer patient told me, “Even though I have very good days (and that is a relative term), I do not want to go back to work. The main reason is how unpredictable the level of my body’s aches, pains, and fatigue can be. My position as a psychotherapist requires me to be consistent and reliable for those who are in need.”
Patients consider many factors in deciding whether to continue working. Dr. Tevarwerk points out that the issues for metastatic patients are different from those who are in treatment for earlier stage cancer where treatment is intense, but shorter term. Most metastatic patients can expect to be in some sort of treatment for the rest of their lives. Even if they take a break from active treatment, they will have frequent doctors’ appointments that will require them to miss work.
The study stresses the need for oncologists to discuss employment issues with their patients. Often, symptoms can be better managed to allow patients to continue work. For example, if a pain medication that causes drowsiness is making work difficult or even dangerous, the doctor might be able to find a better substitute.
Benefits of work
Another research project sponsored by Pfizer found that 77 percent of breast cancer patients at all stages felt that working was beneficial because, besides income, it offered them personal fulfillment along with a sense of normalcy and productivity. The same study discovered that 73 percent of employers report that they provide specific job modifications like flex time, more frequent breaks, and schedule changes to support cancer patients while only 22 percent of the women surveyed knew about such provisions.
Considering this information, plus the numerous conversations I have had with metastatic breast cancer patients personally and in online support groups, there seems to be a huge disconnect between what employers and doctors say and what patients experience. What’s a patient to do?
Consider what you want. Yes, metastatic patients often live years now, but your expected life span is shorter than it was the year before your diagnosis. You need to spend the rest of your life in ways that satisfy you. If your job is enjoyable and productive, find out what you need to do to keep it. If you long to have time to make memories with your little children, learn how to get long-term disability. Continuing with a job you love or need will bring major challenges. Stopping work has its own set of problems. There are no right or wrong answers here. Figure out what is best for you and what you ultimately want out of your life.
If money seems to be the determining factor in your decision, look over your budget with a social worker or financial planner. Cancer is a financial disaster no matter who you are or how much money you started with. But you may find out that there are some financial strategies you haven’t thought of to manage the situation. If you want to quit work, explore your disability options. Your employer and state may have disability insurance. If you have paid into Social Security, you may be eligible for long-term disability. While a disability check is less than a paycheck, some of your expenses, like transportation or work clothes, will also be less.
Talk to your doctors. Let your doctors know about your feelings regarding work. If work is creating problems for your health, share that information with them. You will need their help if you decide to apply for disability. If staying in the workplace is a priority for you, ask them what you can expect as side effects from treatments and how those will impact your ability to do your job. Let them know you would like a treatment plan that takes the ability to work into consideration.
Know your workplace rights. Although the Pfizer study found that three-quarters of employers offer workplace accommodations, people I talk to often don’t experience as much support as they would like at work. When I worked through chemo and radiation, some modifications that could have made work easier and safer for me weren’t available. Yet there were ways my employer could have helped me without major changes. However, my perception that my immediate supervisor disapproved made me reluctant to ask for anything beyond the most essential help like being able to leave early to get to my radiation treatments. I wish I had understood more about the Americans with Disabilities Act (ADA) and had been more willing to be upfront about accommodations that could have helped. The ADA covers people with cancer and provides a list of reasonable accommodations that people should be able to have.
Consider a change. If your current job description isn’t safe for you, you may be able to do something else with your same employer and keep your insurance and seniority with the company. With your weakened immune system, your doctor may not want you working with the public or germy toddlers. Neuropathy or lymphedema may prevent you from working safely with machinery. Talk to your employer about other options. Explore a brand-new type of work, or look for a flexible part-time job that will get you out of the house on your good days while allowing you to get to doctors’ appointments.
Ask for help. You probably will not be able to work full-time, keep a spotless house, take care of your family, and continue with all of your volunteer activities. Something has to go. When a person is going to be in treatment for a short time, there are often people showing up with casseroles and offers to babysit. A metastatic patient needs help for the long haul.
Talk to your family. Maybe they would be more willing to pick up some housekeeping chores than you realize. Maybe they would rather see you have the energy to socialize with friends than have a home-cooked meal. As a family set some priorities and strategies. Make a list of all the people who can help you. What is reasonable to ask them to do for you? If your sister is your ride to a monthly appointment, ask someone else to do the soccer carpool on days when you don’t feel well. Try not to burn out your support network. Ask about volunteer agencies in your community that offer help to cancer families.
Not all that long ago no one was talking about employment issues for metastatic cancer patients because those patients usually didn’t live long enough to continue in a career. Having long-term workplace problems to discuss is a wonderful problem to have!
See more helpful articles:
Cotter M. Breast Cancer in the Workplace. Oct. 9, 2015. Get Healthy Stay Healthy. Accessed from https://www.gethealthystayhealthy.com/articles/breast-cancer-survivors-working-women April 1, 2016.
Kilgore C. Study Reveals Impact of Cancer and Ability to Work. Oncology Times March 7, 2016. Accessed from https://journals.lww.com/oncology-times/blog/onlinefirst/Pages/post.aspx?PostID=1386 March 29, 2016.
Loy B. Accommodation and Compliance Center: Employees with Cancer.* Job Accommodation Network.* US Department of Labor. Accessed from https://askjan.org/media/Cancer.html April 1, 2016.
Tevaarwerk A.J., Lee J.W., Terhaar A., et al. Working after a metastatic cancer diagnosis: Factors affecting employment in the metastatic setting from ECOG-ACRIN’s Symptom Outcomes and Practice Patterns study. Cancer. 2016;122:438–446. doi: 10.1002/cncr.29656
Working during Cancer Treatment. April 2014. American Cancer Society. Accessed from https://www.cancer.org/treatment/survivorshipduringandaftertreatment/stayingactive/workingduringandaftertreatment/working-during-cancer-treatment April 1, 2016.
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.