Working can be a big source of anxiety for many patients. You may wonder what effect your diagnosis will have on your career, your ability to work, and your finances. But the good news is, the vast majority of patients continue to work through treatment.
Please note that this section focuses on working in the United States.
It’s a good idea to be prepared for the future. Here are some things to think about.
If you’re an early-stage patient, you will likely have surgery and will need to take some time off afterwards to recover. This will likely be at least 6-8 weeks for many patients, but could be longer if you have a physically active job.
If you are a stage III or IV patient, you may be having some combination of chemotherapy, radiation, and/or surgery. Your chemo infusions will probably be every two to three weeks, depending on the protocol, and you will need to spend most of the day at your infusion center. While some people don’t feel too poorly afterwards, others feel nauseated, fatigued, and generally unable to work for several days during each chemo cycle. You will also need to factor in time off for other medical appointments, scans, and lab tests.
It’s important to talk with your oncologist to understand exactly what treatments have been planned, so you are able to communicate clearly with your employer.
Talk to your oncologist about common side effects, how long they’re likely to last, and how severe they may be. You can also ask whether patients on similar treatment plans have been able to continue working, and whether your oncologist has specific recommendations based on your personal circumstances.
If you’re just starting chemotherapy, it might be a good idea to take off a bit more time than you think you need at first, until you can figure out how your body responds to treatment. Some people feel okay on infusion day, and a couple of days after that (hello, steroids!) but then crash. Other patients feel terrible on infusion day, then slowly recover as time goes on. These patterns can be different for everyone, so it’s important to listen to your body and be realistic about what you’re capable of doing while in treatment.
This may seem like a silly question, but it’s an important one. Some patients love their jobs, and find that continuing to work brings them a sense of satisfaction, normality, and routine that they crave. Other patients find their jobs stressful and draining, and would rather spend their time with family and friends and focusing on self-care. Of course, we all have logistical and financial considerations to think about, so quitting your job may not be an option at the moment. But it’s a good idea to consider what you really want, and how continuing to work is going to affect your quality of life.
If chemo and/or radiation is part of your treatment plan, you’ll need time off to attend medical appointments and to recover from side effects. If your job allows for flexible working hours and the opportunity to work from home, it will be much easier for you to continue working than for someone with a rigid schedule who has to be physically present at work every day.
However, in the US, you have the right to ask your employer to make “reasonable accommodations” (more on this later) to allow you to continue working if you want to. You may be able to ask for reduced hours or a change in your work schedule. It’s important to realize this may be much more feasible for an office worker than a restaurant server or delivery driver.
Cancer can be an emotional rollercoaster, and treatments can be very hard on the body. You’ll need extra time to rest, recover and focus on self-care. If you have a highly stressful or demanding job, where you are under pressure to meet strict deadlines and work long hours, you may find it difficult to balance everything. If you have a job that requires a lot of your energy, physical or mental, you will probably need to consider taking more time off than someone with a less demanding job.
You may be able to talk to your employer about modifying your schedule and/or daily tasks to reduce your stress.
This is probably the most important factor that will influence your decision whether or not to continue working. Unfortunately, most people are not able to continue paying their bills if they quit their jobs, particularly if they are single or don’t have much family support. In the US, health insurance is also tied to employment. If this is your case, it’s a good idea to be honest with your employer about that fact, ask for necessary accommodations, and try to come to an agreement that works for everyone and allows you to continue working.
If you do lose your job, or are unable to continue working for any reason, know that there are public benefits you may be able to access, as well as non-profit organizations who can provide some financial assistance.
Read more about financial assistance here.
Cancer treatments are expensive, and sometimes patients need to travel out-of-network for second opinions and treatments that may not be available locally. Having a good insurance policy can make a huge difference to your general well-being and treatment options (nobody likes fighting with insurance companies!) If you feel like you need to continue working because you rely on insurance from your employer, it may be a good idea to see if you can reduce your hours while maintaining your insurance.
If you lose your job, or are unable to continue working for any reason, there are several options that may be available to you.
Diagnosed: August 2020
Disease: Stage III rectal cancer, progressed to stage IV with lung metastases
I’m 78 years old. I had year-long bleeding, which was originally diagnosed as hemorrhoids. I went straight to chemo radiation in Oct 2020 and then three months of recovery. I got a permanent colostomy in Feb 2021 and a clean colonoscopy then too.
I am the executive director of a homeless agency in Los Angeles. Due to Covid, all of us were working remotely, so I continued to work through the first six months of diagnosis and treatment. I found working to be a great distraction. It was all on the computer. I didn’t have to travel, I kept my pay and my engagement with my employees and it just helped all around.
Fast forward post-APR surgery, I took a six-month medical leave. During this time I received Capox for seven infusions and then only Xeloda and Avastin since July of 2021. During that time, my scans showed stability, and just recently, small growth in lung nodules. So I became stage four.
Beginning in September 20 21 I went back to my original job as we’re still remote. I have been working 5 to 6 hours a day since September 2021.
It would have been difficult to work while receiving oxaliplatin due to fatigue and neuropathy, which I still have but I can manage while on maintenance. I hope this gives some encouragement to others.
If you live in the US, your rights at work are outlined by several different laws we have listed below. If you live outside the US, these laws will be different. It’s a good idea to check with a cancer support worker or social worker to help you understand your rights and the relevant laws in your country. Here are some US laws you need to be aware of:
This law was passed to help protect people with past, current, or perceived disabilities from discrimination at work. If you work for a private employer with more than 15 employees, or any type of public employer (local, state, or federal), you have a right to ask for “reasonable accommodations” if you have a medical condition that affects your ability to carry out your job. Some examples of reasonable accommodations include:
There are many accommodations that employers can make to allow you to continue working, however, employers are allowed to refuse accommodations if they will be an “undue burden” on the company. For more information, look at the ADA website.
Before asking for reasonable accommodations, think about how you will approach talking to your employer. Read more about this here.
The Family Medical Leave Act provides up to 12 weeks of unpaid leave for people who need to take time off due to medical or family reasons. If you work for a public agency, a public or private school, or a company with more than 50 employees, cancer patients and carepartners can request up to 12 weeks off work. You can request the entire 12 weeks at once, or break it up into smaller increments. For example, you can even use FMLA leave to request a few hours off work to attend a scan appointment. Unfortunately, time off under FMLA is unpaid, but it is often possible to combine it with sick leave, extra paid vacation time you may have saved, or payments from a short-term disability plan, if you have one.
To learn more about FMLA, head over to the US Department of Labor website.
This law ensures that your genetic information, including cancer-related genetic testing, remains private. It guarantees privacy for your results, as well as any discussions that you have had with a genetic counselor. Employers and insurance companies are not allowed to request or use this information to make decisions about employment or insurance coverage.
If you want to learn more, read about the law on the National Institute of Health website.
First of all, you are not legally required to disclose any aspect of a past or current diagnosis to your employer or anyone you work with. However, if you are planning on working through treatment, it may be difficult to keep your condition private. Furthermore, your employer is not required to provide you with any flexibility or accommodations if they’re unaware of the medical issues you have.
Before speaking with your employer, take some time to plan out what you are going to say. Consider the following questions:
Do you want your employer to know exactly what stage you’ve been diagnosed with, or just the fact you have cancer? Do you want to disclose your full treatment plan, or just the fact you’ll need time off for appointments and recovery? Do you want to leave the C word out completely, and focus on the time off you’ll need for a medical issue?
This depends on the relationship you have with your boss and employer. Some patients prefer to be totally open. Other patients prefer to keep things private. If you prefer privacy, you may be able to get time off and/or workplace accommodations without disclosing all the details of your diagnosis. Focus on the specific dates and times you need off for medical appointments.
You can also focus on your side effects, rather than your diagnosis. For example, if you need extra breaks, a letter from your doctor could state that you’re experiencing nausea and fatigue due to a medical condition without mentioning any specifics.
When asking for accommodations or time off, it’s always a good idea to have medical documentation ready to support your request.
What information you choose to disclose to your employer will influence what documents you provide. Medical notes from an appointment with your oncologist confirming your diagnosis and treatment plan might be sufficient. Or you can ask your oncologist to write a letter including some basic information about how your medical condition will affect your job.
It’s important to be clear with your employer about what exactly you’re asking for. You can make a list in advance. Here are some things you may want to consider:
If mornings are always busy in your store, and afternoons are a bit quieter, you might choose the afternoon to discuss the topic. That way, you are less likely to be interrupted. If your boss is stressed after meetings, you might want to wait until they are in a better mood. While there will never be a perfect time, thinking about a time that would be convenient for everyone involved may lead to a more thoughtful and productive conversation.
If you have to take time off work for treatment, the topic of your health will probably come up with coworkers. If you don’t want to share, that’s okay. But thinking about how and when you would like to approach the subject, and how much information you want to disclose, is a good idea.
You may also want to prepare responses to the questions “how are you doing?” and “how can I help?” It might be a good idea to prepare a list of things that would be helpful for you: home-cooked meals, a voucher for a housekeeping service, audiobooks to listen to during treatment, or more!
Unfortunately, it’s hard to know how people will respond to serious health issues. Many patients find their coworkers to be wonderfully caring, empathetic and supportive. However, you may find that some people become awkward and distant towards you. This is often because they don’t know how to respond, and don’t want to say the wrong thing. They may have personal experiences with cancer, or may be feeling anxious or insecure about their own health. While knowing this doesn’t make things any easier, you may want to prepare for the possibility of relationships changing.
If you are treated differently than other employees due to the fact that you have cancer, or had cancer in the past, that is discrimination.
Some examples of discrimination include:
In the US, the Equal Employment Opportunities Commission (EEOC) is in charge of dealing with complaints related to workplace discrimination. You can learn more about the work they do and how to file a complaint on their website.
In most cases, you have 180 days from the date of the incident to report to the EEOC. In some cases, such as reduction in pay, you may have longer than that. You can file a complaint by yourself, or you can consult with a legal advisor or attorney to help you.
These resources can help you better understand your rights at work:
This organization provides education and resources related to logistical issues such as finances and employment. They offer free educational webinars, lists of resources organized by topic, downloadable guides, and a great series of short animated videos that discuss a variety of topics related to work, insurance and finances after a cancer diagnosis.
This organization provides support to people touched by cancer. On their website, you can search for information and resources by topic, access online support groups and register to participate in free educational workshops and community education and wellness programs.
This organization provides career support for people who have been affected by cancer. They provide educational resources for people who are working during and after treatment, as well as resources for people living with cancer and cancer survivors who are looking for a new job or career. They also have downloadable guides and free webinars to help you learn more.
JAN provides education and support to employers and individuals regarding disability accommodations. On their website, you can access a free consultation service as well as lots of educational resources and sample letters to help you communicate with your employer around reasonable accommodations.
The Cancer Legal Resource Center offers free legal advice to cancer patients and carepartners. They also provide a free downloadable guide that details your legal rights related to work, finances, insurance and medical issues.
This website has several articles that give more information about working with cancer and your rights at work. They also have lists of resources regarding logistical issues such as finances, work and insurance.
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