Returning to Work After Cancer Treatment, with Fay Hlubocky, PhD, MA, FASCO, and Shelly Rosenfeld, Esq.

ASCO: You’re listening to a podcast from Cancer.Net (Cancer dot Net). This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the voice of the world's oncology professionals. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guests’ statements on this podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses. In this podcast, Dr. Fay Hlubocky  and Shelly Rosenfeld discuss what people should know about returning to work after cancer treatment. This podcast is intended for informational purposes only and does not constitute legal or medical advice.  Dr. Hlubocky is a licensed clinical health psychologist with an expertise in psychosocial oncology and a health care ethicist at the University of Chicago. She's also the Cancer.Net Associate Editor for Psychosocial Oncology. Ms. Rosenfeld is the director of the Disability Rights Legal Center’s Cancer Legal Resource Center, which provides free information and resources about cancer-related issues.  View disclosures for Dr. Hlubocky and Ms. Rosenfeld at Cancer.Net. Claire Smith: Hi, everyone. I'm Claire Smith, a member of the Cancer.Net team, and I'll be your host for today's Cancer.Net podcast. Cancer.Net is the patient education website of ASCO, the American Society of Clinical Oncology. Today, we'll be talking about what people with cancer should know about returning to work after treatment, including information about the legal protections available to people with cancer in the United States. Our guests today are Dr. Fay Hlubocky and Ms. Shelly Rosenfeld. Dr. Hlubocky is a licensed clinical health psychologist with an expertise in psychosocial oncology and a health care ethicist at the University of Chicago. She's also the Cancer.Net Associate Editor for Psychosocial Oncology. Thanks for joining us today, Dr. Hlubocky. Dr. Fay Hlubocky: Thank you, Claire. It's such an honor and a privilege to be with you and Shelly today. Claire Smith: Wonderful. Our next guest, Ms. Rosenfeld, is the director of Disability Rights Legal Center's Cancer Legal Resource Center, which provides free information and resources about cancer-related legal issues to members of the cancer community across the U.S. Thanks so much for being here, Ms. Rosenfeld. Shelly Rosenfeld: Thank you. I'm honored and grateful to be here today. Claire Smith: Before we begin, I should mention that Dr. Hlubocky and Ms. Rosenfeld do not have any relationships to disclose related to this podcast, and you can find their full disclosures on Cancer.Net. So, to start, Dr. Hlubocky, can you talk a little bit about some of the ways that people might think about work differently after an experience like cancer? Dr. Fay Hlubocky: Thank you, Claire. That's such an important question to start today's talk with. For many, the thoughts and decision-making surrounding returning to work can be very complex. Perspectives on if, how, and when to return to work will differ from person to person. Although one may feel quite motivated and even inspired to return to work after the cancer experience, the idea to return to work immediately after this post-cancer journey phase may simply seem overwhelming and bring about anxious and worrying thoughts. Thoughts and questions such as, "Am I ready to return to work after all I've been through?" or "Can I do the job like I did before?" are common and expected. For some who may experience financial burdens, these individuals feel compelled to return to work with thoughts of, "I have to get back to work," and feel like that's the only option is to return to work immediately even if not ready. Yet others may ask themselves, "Should I work full- or part-time? How can I return to work?" Or, "Can I return to that same busy schedule as I had engaged in before?" Finally, some may wonder if that same job is right for them after all one has been through. Again, these are very normal, common, and expected thoughts and questions regarding return to work that the individuals certainly may hold after the cancer experience. Claire Smith: Wonderful. Thank you for that overview. And next, you touched on some concerns, but I'd love to hear about what concerns someone might have about returning to work after cancer. Let's go to you, Ms. Rosenfeld. Shelly Rosenfeld: Well, one concern for someone returning to work, it could be either, of course, returning to their job, but it can also be returning to work and starting a new job. And that might be when one might need to perhaps take additional days off, and whether it's for treatment or follow-up care or perhaps just monitoring as well. But to use up those sick days and then to need additional sick days, there is protections out there such as Family and Medical Leave Act, or FMLA. But a concern for someone starting a new job is, in order to be covered by FMLA or the Family and Medical Leave Act, someone has to have worked for the employer for a total of 12 months and have worked at least 1,250 hours in the last 12 months, which comes out to a little more than part-time. But that is certainly a concern because taking time off whether to care-- actually, it could also be a caregiver taking care of someone with cancer, that they need to have worked for that employer for at least 12 months. Later, I think we might be talking about one way to work with the employer in terms of - just to kind of hint with the Americans with Disabilities Act - kind of a creative way to ask for additional time off and to see if that can work out with the employer. So I want to wait until we talk about that a little more in depth, but I just want to say there is hope and there is something that perhaps can be worked out with your employer if there is that concern. But I just want to say that while FMLA, and just to kind of briefly touch upon it, it allows certain employees to take up to 12 work weeks per year to take care of oneself or certain family members with a serious health condition. For example, that could include a spouse, parent, or child. So it is unpaid, but one's job has to stay open for that person until the end of that 12-week period, and the employer has to keep providing health benefits. So it's something to keep in mind if somebody is returning to work and is at their job now for some time and needs to take those days off. Beyond those sick days, there are protections out there. But if they're just returning to work and they haven't been at a job for that long, then they should consider, "OK. Maybe the state has additional protections that the federal law does not have," or to think about-- and we'll talk about reasonable accommodations in Americans with Disabilities Act in a bit, I think, as a solution. So with every challenge, I think there is some kind of option, but that is certainly a concern. Claire Smith: Yeah. Absolutely. I think it's so important to sort of think about these concerns as people are going to worry about them, but there are ways to sort of address and hopefully cope with them. Dr. Hlubocky, do you have anything else to add? Dr. Fay Hlubocky: I agree, many survivors we know with cancer do desire to return to work. Just recognizing the fact that holding a job provides a routine, a schedule, freedom, income, meaning, it makes us feel fulfilled, it gives us a sense of purpose, and work specifically for survivors can bring a sense of normality, especially after that cancer experience. Yet for others, we know that the thought of returning to work can be very concerning. Folks might be worried over their energy and their endurance and ability to really perform at their job due to continuing or existing cancer-related or treatment-related symptoms, such as fatigue or insomnia or pain. Others may worry about colleagues' attitudes and relationships, concerns and fears over if colleagues will judge them for their appearance or their performance may arise. As well, many survivors question, “How will I be treated?” or “Will they work with me as they did before?” These are also frequent and commonly held concerns by many patients and survivors. For all survivors, it's important to recognize that this is a new normal, a new phase in this journey post-cancer and cancer treatment that can really bring a new perspective with greater meaning and purpose. This new perspective - really, this growth - can be a motivator and inspire not only you in the work environment but your colleagues as well. Claire Smith: So talking about maybe some of the things that we can share with our listeners to help assuage some of these concerns that they may have. I want to start, if someone is applying for a new job after cancer treatment, maybe they've been out of the workforce for a little while while going through cancer and its treatment, are there any legal protections available to them during that process, Ms. Rosenfeld? Shelly Rosenfeld: There are. So I briefly mentioned the Americans with Disabilities Act, or ADA, which is a federal law that makes it illegal for employers with 15 or more employees to discriminate against, and it includes qualified job applicants or qualified employees with disabilities in any stage of the employment process. So that includes the interview process. A lot of people don't know that before someone even starts working, that they do have those protections. So that is really important for someone to keep in mind as they go through the interview process. So an employer is not allowed to ask about a job applicant's medical history, whether they've taken any leave in the past, or whether they expect to take leave. The only 2 questions related to disability or cancer that employees are allowed to ask are, "Are you able to perform the essential job functions?" and "How will you perform the essential job functions?" So, in order for someone to receive protection under the ADA, they have to be able to do the essential job functions. For example, without anyone knowing me, I don't have experience playing football. So, I do not have the ability currently to do the essential functions of being an NFL football player, not at this time and not in the past, so far. So, for example, the ADA, no matter what, wouldn't protect me because I can't do those job tasks. But if someone can do the essential functions of a job, right, they're applying for it, hopefully they're able to do those essential functions, if they have cancer or are affected by the effects of cancer treatment, they could be protected. So it is really important to keep in mind during that job application process, the employer can't ask if you're disabled. I know that sometimes they'll have things on the end of an application, but those are optional, right? So someone does not have to answer that, but they can ask, of course, if you can do the essential functions of the job. And so, yeah, I think that's just something to really keep in mind as someone's going out through that process. Claire Smith: You talked a little bit about the ADA and how we can use those protections. And a lot of people with cancer, they may have mental changes like brain fog or even physical changes, fatigue, or other side effects, long-term side effects of their cancer and treatment, where they might need some accommodations to be able to accomplish those essential job functions that they can do. Can you talk a little bit about what that process looks like to ask for those accommodations? Shelly Rosenfeld: Just to recap, cancer, the effects of cancer can be a disability under the Americans with Disabilities Act. I know for some people affected by cancer, thinking of the word “disabled” as it relates to cancer might be just a new way to think about it. So I'm only talking legally. So somebody might have been in the best health of their life and been in the best shape and then they're affected by cancer, and then the law may consider them as disabled. So we're talking about disability in terms of the legal definition for the Americans with Disabilities Act.  So let's talk about reasonable accommodations. So as you mentioned, of course, the effects of cancer can be a disability because they might substantially impair major life activities such as eating, sleeping, concentrating. And so reasonable accommodations can range anywhere from making changes to a physical environment, such as moving file drawers to a more accessible location, or changes to the way that someone works. For example, teleconferences into meetings rather than in person. Whether an employer has to give someone the type of accommodation they're trying to get depends on whether giving it would be an undue hardship to the employer. Being an undue hardship usually means practically that it will cost the employer too much to give someone the accommodations, so what costs too much really depends on the specific job and the specific employer at issue. So, for example, what might be easy to do for one employer may actually be really difficult for another, but we usually ask for folks to ask for accommodations before their work performance starts to suffer. So if your performance suffers at work, an employer may take negative action against you if they don't know you have a disability or a need for accommodation. So if an employer sees someone sleeping at their desk, they can be fired. So if the employee decides to ask for a reasonable accommodation under the ADA and tells the employer that they have fatigue from cancer treatment and need more frequent breaks due to fatigue before the employer has a chance to see them sleeping on the job, the employee has more protection at work. It is a personal decision, and I just want to touch upon this because this question sometimes comes up where people say, "Should I talk to my employer or not?" I know, the CLRC, we don't take a position, yes or no. It is completely that person's decision, and I would respect someone either way. So that might on the one side be a little nerve-racking, but it could also on the flip side be reassuring. But there's no wrong choice. It's best to do what is best for that person. I do recommend, however, if you do want to have that discussion with your employer, if you can find someone trusted, whether it's a parent or a friend or just even a doctor or patient navigator, and try to have that conversation, because it can be difficult talking to an employer about that. Even if you feel like you really have a good relationship with that employer, it is still a different type of discussion. And I just want to also mention that it is an interactive process. So suppose someone asks for accommodation, a reasonable accommodation under the ADA, and the employer says, "This is not something that we can do. It's going to cost too much. It's not practical." Then hopefully they come back with something and say, "How about this option?" And then the employee could say, "It still doesn't really help what is the ultimate challenge here. How about this?" And hopefully it's both sides working together in the interactive process. Now, of course, if someone asks for a reasonable accommodation, it may very well be granted in its original request. But just to keep in mind that if an employer pushes back, it is designed to be reasonable for both sides. And just to give an example, because I think it could be hard when someone says, "It depends on the employer. It depends on the employee." Right? So many people have such different jobs and employers are also so different, but here's an example. Suppose, for example, someone is a cashier, and they have to interact with people. They have to ring them up and take money and work at the cash register, but they're going through cancer treatment. And they're still able to work, but they do need a reasonable accommodation. So, for example, they might ask for a stool to sit between helping people. So if there's not someone else next in line, they can at least sit down. Giving them a separate office with a gold chair might not be reasonable, because they actually have to be there to help folks, but a stool doesn't take too much space, gives someone the opportunity to sit down, could very well be reasonable. So that's just kind of a way to think about it as an example. And I think the doctor or also patient navigator team can be partners in this. You can ask, "When someone has this treatment, what side effects can I expect? I do this as my job. Have you had patients like this in the past? What are some things that might have helped them?" And you just start that conversation going and also think about your job and how you go about your job and what might help, or how you're feeling and what could really make a big difference. It might be that snacks are not allowed at the desk, but having a snack and being able to eat it can really combat nausea. It can also be more than one accommodation. There might be more than one side effect that needs to be addressed. So it is something to keep in mind. Be aware of yourself and what helps you ultimately succeed so you can keep having that income, keep having that job, and hopefully keep having that health insurance. Of course, there's the FMLA protections if someone needs to take that time off, but that is something to keep in mind. And because I promised this, I just want to raise it now, is that if someone is not eligible for FMLA based on they haven't worked at their job long enough to qualify and there's no additional state protections that apply, they may be able to ask for some additional time off under the Americans with Disabilities Act beyond their sick days. Saying, "I don't know when I'll get back," and kind of an indefinite time of leave, that might be harder to get approval for as a reasonable accommodation. But saying, "I need X number of days, and then I'll check in with you about that." Or, "I need X number of days," might be something that the employer might be more willing to work with that person. So like I said, there is something to be worked out potentially. Claire Smith: Oh, wonderful. Thank you for outlining all of that. I think that's really helpful to sort of understand what that process looks like, what maybe some reasonable accommodations are, and the fact that it is sort of an interactive process. So another thing that Dr. Hlubocky mentioned earlier as maybe being a concern is how to talk to coworkers. Are there questions that coworkers might have after you've been out for cancer treatment, how to manage perhaps uncomfortable conversations. Can you talk about some of the ways that someone with cancer can kind of help prepare mentally for those kinds of conversations, Dr. Hlubocky? Dr. Fay Hlubocky: Reactions will be different, and they'll vary from person to person, colleague to colleague. Some colleagues will be supportive, know when to ask or not to ask questions, and these colleagues will also try to be helpful with tasks as you return to work. Yet others might be very avoidant because they simply don't know what to say, and that can be hurtful because we all want to feel supported by our colleagues, especially after an experience like cancer. Therefore, it's important for you to prepare and plan on what you want to say before you're returning to work. Honestly, there's really no right or wrong way to address this, as everybody deals with the cancer experience differently. You may desire to talk openly about the cancer experience, or you might wish to simply move on in order not to be treated differently by colleagues. Empowering yourself by setting boundaries on how to address these questions is key. For example, you can thank your colleagues for their concerns. However, express that, for you, now is not the time or the place to discuss your experience. Remember, you have to feel comfortable and safe in discussing your experience. Accept help if offered, especially in the initial stages of returning to work. Also, it's important to be prepared that some relationships may change. For example, those who were supportive and close to you before the cancer may distance themselves afterwards. You will learn who you can count on, and that is what's important. If you do feel comfortable, talk to your supervisor regarding any concerns that you may have about returning to work and addressing colleagues' questions so the supervisor can also help prepare the staff as well. But, again, only if you are comfortable. Be sure to check in with your supervisor, especially if you feel that the work environment is not supportive. Claire Smith: Wonderful. Great advice. And working can sometimes be stressful under the best of circumstances, and especially if you've gone through cancer treatment, you're maybe starting a new job or returning to a workplace. What are some tips for coping with some of those emotions and stresses that might arise? Dr. Fay Hlubocky: First and foremost, it's talking with your oncology team about when is the best time to return to work given your specific phase in the cancer survivorship journey, as well as inquiring about symptoms that you may have, like fatigue or cancer-related cognitive dysfunction and any other worries or symptoms that may interfere with returning to work. We want to be sure that you're physically healthy to return to work, and be sure to talk to them about any fears associated with working. Remember, we, your cancer team, are here to help you. Also, knowledge is power, and thus education on what is needed or how to return to work after cancer, taking into consideration life changes and symptoms can help to alleviate some of this distress. Also, again, if comfortable, talk to your supervisor about your options and to determine a plan. With the change in work environment, you may have the option to return slowly, gradually to the work environment first, maybe virtually, then part-time with fewer hours and gradually full-time. Again, if comfortable, talk to your supervisor about any time and work accommodations you may feel. Planning this return to work in partnership with your supervisor can really help you prepare as well as address any worries and anxieties you may hold. If the stress and the anxiety associated with returning to work is just really simply too overwhelming, talk to your therapist to help you plan to return to work. If you're not already connected to psychosocial support, engaging in the service can be a really valuable tool to help you determine your readiness to return to work. A psychologist, a social worker can really help you with preparing and problem-solving and planning when or if returning to work is an option now or in the future. Cognitive behavioral therapy, or CBT, is a research-based psychotherapy that we use that can help to address anxious and worried thoughts that you may have. And the goal of CBT is really to learn to control, challenge, and overcome distressing thoughts and beliefs about returning to work and helps you learn skills to really change your behaviors. It's also OK to realize that your job is now not right for you. Remember, a comprehensive plan in collaboration with your doctor, potentially your supervisor and psychosocial support, can really help prepare you, empower you as you begin the process of returning to work. Claire Smith: One other thing I wanted to touch on a little bit is issues around workplace discrimination. If someone is worried that they might face workplace discrimination after cancer, are there any resources available to them, Ms. Rosenfeld? Shelly Rosenfeld: Yes. If someone believes they've been discriminated against in the workplace or have questions about anti-discrimination protections, first of all, the Cancer Legal Resource Center, or CLRC, we have handouts on our website about someone's right to be free from discrimination in the workplace. Our website is thedrlc.org/cancer, and we recommend that someone speak with an employment attorney to discuss their legal options if someone thinks that they've been faced with discrimination. Someone also might want to file a complaint with the Equal Employment Opportunity Commission, or EEOC. The person can bring a claim for a violation of the Americans with Disabilities Act, or ADA, file a complaint with their state fair employment agency - of course, that depends on the person's state, where they live and work - or file a lawsuit against their employer. So, there's also an organization called the Job Accommodation Network, or JAN, which is a service of the U.S. Department of Labor's Office of Disability Employment Policy, where someone can learn more about resources available to them. So certainly, there are different options. We hope that no one experiences discrimination because of cancer, their history of cancer, an association with someone with cancer. Hopefully, no one ever experiences that. But if they do, hopefully they feel empowered already that there are options out there for them to assert their rights and hopefully ensure that others in the future will be free from discrimination as a result of cancer in the workplace. Claire Smith: Thank you for sharing those resources. Absolutely. Do either of you have any final thoughts before I let you go today or anything else you wanted to touch on for our listeners? Shelly Rosenfeld: I just want to say that, at times, it can be overwhelming, in addition to having a cancer diagnosis, to encounter so many different legal issues that are kind of these non-medical side effects of cancer. And I just want to say that at the Cancer Legal Resource Center, and I know that patient care teams really do care about keeping someone informed of their rights, and so it is important to know that there are rights out there and not to be hopeless about their rights because there might be things that you just never knew were possible. But just by making that effort to learn more about what's out there and what you might be entitled to, whether it's a health insurance appeal, whether if someone has to take a longer time off their job more than a year because of cancer, that there are income replacement options potentially through Social Security, that there are just health insurance options potentially out there for them, that there is hope and it is worth trying. It is worth appealing. And to work with your doctor and medical team saying, "Can you give me a letter? Can you write this for me? Do you have something that you've submitted for someone else for appeal for this medication or for this type of treatment?" And try to seek support in a practical way to stand up for yourself because the results and the upside of doing so are so important. So I just hope that someone comes away with this knowing-- you don't have to memorize or take notes or be an expert to know this after this podcast, just know that it's out there and that there are resources, and you can learn. And what the CLRC does, we do free. So just to know that there is something out there for them. Claire Smith: Wonderful. Great message. Dr. Fay Hlubocky: That's great, Shelly. Thank you. I've learned so much from this podcast. And to all the Cancer.Net audience out there, whether you're a patient or a caregiver or even part of the team, please know that we're here to help you in any capacity. Don't fight this alone, have self-compassion, be patient with oneself. This process does take time, and there's lots of resources here to help you to decide if returning to work is right for you now or in the future. Again, we're here to help you. Claire Smith: I love that. Thank you. And thank you both so much for sharing your expertise today. It was really wonderful having you, Dr. Hlubocky and Ms. Rosenfeld. Thanks for joining us. Shelly Rosenfeld: Thank you. Dr. Fay Hlubocky: Thank you so much. It was an honor and a pleasure to be with you all. Thank you. ASCO: Thank you, Dr. Hlubocky and Ms. Rosenfeld. You can find more resources and information about life during and after cancer treatment at www.cancer.net/survivorship. 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