In this section, we outline how participants’ experiences in the workplace and their perceptions about careers were and were not changed by having cancer. First, we describe what happened while participants underwent treatment, including the perceived tenor of their workplace environment, access to reasonable accommodations, and how these experiences may have been shaped by their relatively early tenure as working adults. Next, we outline how the workplace did and did not change after they finished treatment. Finally, we discuss how experiencing cancer influenced how many of these young adults imagined their career trajectories.
Influences on career while undergoing treatment
Almost all participants (N = 24) disclosed their cancer diagnosis to a supervisor or someone in position of authority at their workplace. The ADA and FMLA both require the employer to receive notice of the disability or serious medical condition before providing leave or other job accommodations to the employee. The most cited reason for disclosing was to explain why they would be missing work—doctor’s appointment or surgery—so that their superiors would not interpret their absence as a lack of commitment to their job or a lackadaisical work ethic. Once their diagnosis had been disclosed to at least a small circle, workplace experiences generally fell into one of three categories. Six participants had overwhelmingly positive experiences, one in which they received the accommodations they needed along with strong support from colleagues that buoyed their health and career.
A woman who was diagnosed with breast cancer at age 31 explained that her colleagues at her government job offered unequivocal support.
It didn’t cross my mind that they were going to fire me or cut my pay or anything because I had got cancer. They actually gave me a raise when I got cancer. I was going through treatment and they said, “You’ve got a lot of bad news so we’re going to give you a raise and hopefully this will make things a little bit better.” (Participant No. 13)
Another woman who was diagnosed with breast cancer at 39 found that the positive work environment ameliorated some of her medical anguish.
My work was a wonderful, wonderful distraction from this horrific diagnosis at such a young age. It was like I could come here and for eight to nine hours forget about it. And that’s what I did—and it was beautiful. (Participant No. 4)
In these cases, where work played a supportive role, each participant had a well-placed advocate who either buffered them from other negative workplace influences or had the authority and desire to craft a flexible (and often informal) solution that fit the needs of the particular participant. The story of a woman who, at age 25, was diagnosed with non-Hodgkin’s lymphoma, illustrates this dynamic: “I think it also helped to have my direct manager be someone who was very compassionate and, for lack of a better word, just liked me. So that probably worked in my favor.” (Participant No. 3)
Seventeen participants fell into a second group: colleagues offered support but also engaged in subtle acts that made the participant feel uncertain about their employment future. In these cases, participants were ultimately able to receive most if not all of the accommodations requested, but they did encounter some barriers from their employers in the process. For example, a woman diagnosed with melanoma at 22 recalled a meeting with her supervisor.
I remember telling [my supervisor] when I went for the appointment with the surgeon, [that] they’re going to call me with a date, and it’s not flexible at all. And I said, “Once I know, I’m pretty much just going to tell you—this is when I need off from this time until, whatever.” And she’s like, “Well, I might need you to work around that time a couple days before…. maybe you’re going to have to try to switch with people so that you’re not taking PTO [paid time off].” And I was like, “I shouldn’t have to be emailing people to switch to get PTO time off for this.” (Participant No. 2)
Participants most often viewed these actions as insensitive or thoughtless, not discriminatory. Even when they did believe that legal intervention may be warranted, the other demands in their lives made this option less viable. A woman who worked as a hairstylist when diagnosed with breast cancer at 37 commented:
I had to cover my head when I lost my hair. I wasn’t allowed to be bald. I needed to either have a scarf, or a hat, or something on. I couldn’t wear a wig because my head is giant and my wig didn’t fit well. And it was hideous. Seriously, it was like the worst wig ever. Legally, I know that that’s a lot of things that [the supervisor] is not really supposed to say. But it wasn’t, at the time, anything that I really felt like pursuing because I had enough on my plate. My staff sometimes would be great. And then sometimes, I would walk in the back room and I would hear them saying, “Well, she can’t do that because she has cancer.” And I’m talking about things like I can’t scrub the toilet that 45 other people have used today. I have had so much muscle wasting that carrying this giant bag of trash 100 yards to the dumpster, I can’t do. I didn’t ask for a whole lot of accommodations, but people get tired of hearing about it after a while. (Participant No. 22)
The third category, experienced by four participants, is characterized by overt hostile at work after disclosing cancer. These participants’ employers refused to offer accommodations. Here, participants encountered open hostility or refusal to offer accommodations. For example, a female participant described her work environment after she received her second breast cancer diagnosis at 42.
I was living under such an umbrella of fear that I went back to work less than two weeks after a complete mastectomy. I was at my desk. My husband was like, “Are you are you kidding?” And I said, “She’ll fire me.” So I tried really hard—excessively so—to make sure that there were no accommodations or requests made, period.
Later, she recounts a particular exchange with her boss.
[My boss’s comments] were more focused on the physical. So, a perfect example, when I was heading out the door to go to my complete mastectomy. My husband was out in the car waiting for me because I worked in the morning, and then we were going to drive down to the surgical center. She said to me, “Hey, before you leave I want you to stand against this wall and turn sideways so I can take a picture of you because I think the before and after what will be funny.” (Participant No. 14)
In another case, a participant diagnosed with breast cancer at 29, took legal action. After being fired from her job as an administrative assistant after asking for reasonable accommodations, she filed a lawsuit. However, she settled in arbitration because she lacked the funds to proceed with the court case. She explained her situation.
Participant No. 12: It did go to arbitration and lawsuits were filed. Basically, I asked to be accommodated for my treatment. My doctors provided notes and everything, and they weren’t. At the time I worked in a title department. I was having to file the titles into very heavy drawers that, going through with this, I was having a hard time with it. I’m tired all the time, these drawers are really heavy. And my doc even signed a thing, do not have her pushing, lifting or anything over 10 pounds. They didn’t even follow it. So no matter what I did they didn’t. They ended up firing me. It was like an uphill battle. I tried going to HR. My boss, she wasn’t nice at all. You could not go to her about anything. So it was just a lot of that. They weren’t very accommodating and a lot was put on me and I’m like, OK, I’m done here. Once I got fired it’s like, OK, I’m hiring an attorney over the documents they gave me.
INTERVIEWER: What did the attorneys or others explain to you were your rights and that you have as an employee?
Participant No. 12: They had to accommodate me. That’s a part of the ADA act, they were supposed to accommodate me, which they didn’t do. That was something that they violated. But I only had so much money to go on legal stuff, that’s where everything was settled in arbitration. Yeah, they said a lot of my rights had been violated because of that. And it didn’t go to trial because [I didn’t have] the money.
The most frequent type of reasonable accommodation was requesting time off for treatments or doctor’s visits. Over 77 percent of participants explicitly asked their employer about taking time away from the work place during business hours. About half (55.6%) asked for flexible hours or work schedules to accommodate their treatment regime. Other types of accommodations included changing job duties, establishing or increasing a telework schedule, and/or reduced or flexible work hours. For some, asking for time off was not viewed as an accommodation per se because the participant was using his or her paid leave, which was a benefit that any employee at their company could enjoy regardless of the reason. That said, many of these workers needed more time off than they had available, and those who worked retail or nursing did not have as much flexibility or autonomy around their schedule.
Office culture and one’s immediate supervisor influenced response to a request for reasonable accommodations. Some supervisors “probably looked the other way” as one participant put it, or developed their own informal processes for taking paid leave. In other situations, participants found that their requesting time off was viewed as lacking commitment to the job.
In general, while participants had heard of the American with Disabilities Act (ADA) only four knew that employers could not discriminate people with cancer. Of those who knew they had rights they did not specifically know what those rights were or how to exercise them. they often did not know in practice what that looked like. One participant who had done research on the ADA noted that many employers, includes hers, were not adept at communicating workers’ rights.
My job did a really terrible job of telling me what I needed to do, and what my rights were, and what my benefits were. I knew my job was protected, but I also knew that it was only protected for a short period of time. And my doctor had to be very specific about how long they had anticipated me being out. (Participant No. 22)
About half of participants knew about the Family Medical Leave Act (FMLA) with many noting that they had taken that leave. A few who talked about the process shared that they were too sick to fill out the necessary paperwork and had family members or coworkers do much of it for them. No one interviewed accessed vocational rehabilitation services or knew that these services could help people with cancer.
Resources As A Young Adult
In addition to the support—or lack of support—they encountered, about half of participants noted that they lacked certain resources because they were early in their careers. Several mentioned that they had not accrued enough Paid Time Off (PTO) to adhere to the time-consuming schedule that treatment demanded. Some participants devised a workable plan either by taking a leave of absence (formal or informal), working a reduced work week, or accepting donated leave from fellow employees. However, participants who discussed needing time off shared that these restrictions changed how they handled treatment. A social worker, aged 33 when diagnosed with ovarian cancer shared: “I went back to work as fast as I did because I only had about a month and a half worth of sick leave saved up. So I knew I was running out. If I don’t have sick leave, I don’t get paid, so I had to go back.” (Participant No. 16)
Five participants said that because this was their first job, they did not pay attention to employee benefits. Others reported that their job did not offer disability benefits but this did not concern them initially. Still others did not sign up for such benefits to avoid paycheck deductions. A male participant who was diagnosed with testicular cancer at 23 explained his situation:
I had not signed up for short-term or long-term disability. So after I used my paid time off, which went through in about three weeks. I wasn’t paid at all from the company. So I ended up having to be on Social Security, which [meant] I actually didn’t get the check for eight months. (Participant No. 17)
Several participants recommended that young adults look at benefits like insurance and leave policies when on the job market and not make career decisions based on salary alone. They noted that most young adults, themselves included, can be more focused on take-home pay than benefits that may not seem relevant because of their age.
Influences on career after treatment
Expectations After Treatment: Almost all participants noted that their colleagues assumed that, once active treatment stopped, work life would return to normal, which turned out not to be the case for most participants. Some experienced bouts of debilitating fatigue because of chemotherapy and/or radiation. Others felt they lost cognitive skills due to “chemo brain” and could not resume the level of activity they once did. Even when support was initially present, it often waned over time. A female participant diagnosed with Hodgkin’s lymphoma at 32 summarized it this way: “At first, you have everybody’s support, and of course, it dies down towards the end.” (Participant No. 24)
The duration of the treatment side effects surprised even those going through treatments. A male participant who had Hodgkin’s lymphoma at 27 contrasted the expectations young adults have with the realities of cancer:
I had zero idea that shingles could be a byproduct of cancer treatment and things like that. So knowing those kinds of things, like, okay yeah, your treatment’s done, but you’re not out of the woods. You need to be very careful of how you pace yourself and what you take on and your stress levels and things like that. Especially for 20 and 30-year-olds, that’s a pretty foreign concept too. (Participant No. 10)
In other cases, treatment timelines kept changing as new surgeries or medication options were added. Diagnosed with acute myeloblastic leukemia at 24, one female participant explained how she and her workplace did not understand originally how long she would be unable to work. “I definitely didn’t understand that it was going to be 11 months, I thought that it was maybe going to be a few months, and then I’d be able to start again. I remember getting texts from colleagues being like, ‘I can’t believe you’re still not back.’” (Participant No. 19)
Change in Job Responsibilities: Cancer treatment and its side effects frequently affected the participant’s job responsibilities. For some, a flexible work schedule ameliorated some issues and they could resume their responsibilities in time. For others, receiving a cancer diagnosis and undergoing treatments directly changed their career trajectory. In some cases, the employer demoted or changed the person’s job responsibilities. One participant diagnosed with ovarian cancer at 33 reported back to work, ready to resume her job, and was told by another employee that she had taken over those duties. Another participant, who earlier discussed how she was on leave for 11 months, was demoted once she returned.
I felt like they were going to be really supportive because they kept saying it. But then once I was actually ready to come back, unfortunately, [my] position had been filled. Legally they couldn’t tell me that I was fired; they kept it at the same pay. But professionally I was really upset because I had worked really hard for that promotion. (Participant No. 19)
Some participants, particularly those who were on track to obtaining leadership positions in their organization, decided that the high stress and multiple responsibilities that come with these positions made this path no longer viable. A female participant, diagnosed at 33 with breast cancer while working for a large corporation, illustrated this dilemma:
I just really found out I couldn’t hack the hours and the demands of that senior program management job. As you go up the chain, you have more responsibility, more things fall on your head to make decisions. And if my brain’s a little foggy or doesn’t work all the time, that probably wouldn’t lead me to be successful in one of those jobs. (Participant No. 20)
Influences on future career choices
Physical and Mental Side Effects: About three in four participants expressed that treatment left them with physical or cognitive challenges that influenced the viability of certain careers. A few stayed in their current career with the help of accommodations. A hairdresser was able to stay employed in her chosen profession once she able to acquire certain type of seating and arrange to have regular breaks. Others changed career paths completely. A former social worker transitioned into teaching so she could have regular vacations. A high-end gardener left that field because she no longer had the physical endurance needed to complete the tasks. The psychological trauma of facing cancer also influenced a few participants’ career tracks. One participant was a nurse in a hospital before she was diagnosed with Hodgkin’s lymphoma at age 32. Here, she explained her decision to leave the healthcare field.
I think that my empathy kind of just isn’t 100% there. And I think that I need to have 100% empathy to be working with [patients]. The smell of saline makes me nauseous to the point where I want to puke. I don’t know. I think that it’s something that I can go back to, but I don’t want to do it right now. I mean, if I wasn’t home sick, then I was at the hospital sick. So don’t want to [go back]. I’m not ready for it yet. (Participant No. 24)
Desire to Stay with Current Employer: About a third of the participants remained employed by the same company at which they experienced their cancer diagnosis and treatment. A few remained because they liked their jobs, but most of these participants explicitly tied their decision to remain with the same employer to their medical history. They felt unsure what would happen with their health insurance and other benefits if they left and it was not a risk some were willing to take. Many of these participants also felt loyal or indebted to their employers for superb handling of their illness. As one participant noted: “This is just the most loyal place and that’s why I’m so loyal to them.” For the most part, these participants felt ambivalent about their position, grateful for employment but also “felt stuck” or believed that they have “settled” for a less optimal career. One participant, diagnosed breast cancer at 28, conveys that ambivalence in her story.
[My colleagues have] been very generous to me. This is not exactly what I imagined doing for the rest of my life, and I do feel stuck in that regard. I went back to get my master’s in public health because I’m really interested in health issues, having been exposed now to this whole system. So I’m interested in health policy, all of these things that I would really love to explore. But, at this point in my life, there’s no way that I could make a career change or have that level of flexibility. So it’s frustrating in that regard because I do feel trapped. At the same time, I feel like a jerk saying that because it’s the gilded bird cage. I have it better than, I’m sure, 99% of people do who would be in my situation. (Participant No. 27)
Reevaluating priorities: Facing cancer at a young age caused most participants to reevaluate their priorities in life. For those that stayed with the current job, they often sought ways to improve the work/life balance or to make their job more meaningful. A woman working in finance when her non-Hodgkin’s lymphoma was diagnosed commented
When you get close to death—which, I was pretty close—you’re looking for meaningful work. There’s this balance between that realization that, oh, I don’t want to just work to work, but I want to do something more meaningful and try to incorporate things to make me happy. (Participant No. 18)
For over half of the participants in this study, this contemplation prompted a change in career path. For some, their experience motivated them to help others with cancer. Four participants currently work with or advocate for people with cancer. Other participants left their careers in search of more meaningful employment or a better work/life balance. A female participant, diagnosed with breast cancer at 26, believed her experiences could benefit others. “I feel like my continued diagnosis and medical issues and my experience through the cancer and being a young woman, that I feel like this all of this helps me to be able to counsel other families and other women that are going to through similar situations.” Another participant explains his story this way:
I think the biggest thing for me was the emotional aspects, that the person who you are before you’re diagnosed at work is—for me—a very different person from one who I came back. In a way it’s a good thing. It just doesn’t get you up the corporate ladder as fast. I wanted to spend more time with my family after, and I wanted to have other passions in life that did not involve my job. And I just felt like I feel sometimes when I came back, this overwhelming feeling I need to make the most out of my life. Oh my God, I don’t know how much longer I have, I need to make sure that I’m living the best possible way for me. And if this is not the job then I need to get out. (Participant No. 19)
For many participants, one of the larger challenges they faced post-retreatment were fears about employment, and very few participants felt adequately supported in the process of working after a cancer diagnosis.