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When disease disrupts a degree

For Natalie Baker*, the evening began like any typical weeknight. The 28-year-old runner was lounging on the couch, icing a sore knee, when she felt a lump under her arm. Within hours of going to the student health center, the fifth-year biochemistry graduate student found herself speaking with a breast surgeon who suspected cancer. Baker left the doctor’s office fairly certain that she had the disease; the official diagnosis came a week later.

Like many graduate students, Baker’s life until that week in October 2015 had largely revolved around the lab, where she worked on developing chemical probes to image cancer cells. “Most of my experience dealing with cancer was in a lab, not with people who had it,” she says. “Breast cancer is not something I had thought about people my age getting.”

After speaking with her family, Baker broke the news of her diagnosis to her adviser. “I maintained from the beginning that I wanted to keep working in the lab, and he was really supportive about that,” she says. But she had to make some adjustments, particularly to her then-typical schedule of working 12-hour days and weekends. During chemotherapy, she worked half days in the lab and took several days off after each of six treatment cycles to recover.

Baker now has no signs of cancer, and will begin a postdoc after she graduates this month, but she is still dealing with the disease’s aftermath. Regaining her former stamina could take years, her doctor tells her, and she was recently diagnosed with general anxiety disorder and post-traumatic stress disorder stemming from the cancer. She worries that others could see her ongoing medical needs as a drain on time and resources. (For these reasons, she and others in this piece have requested that they be referred to by pseudonyms.)

She has also slightly adjusted some of her career plans. Instead of relocating and continuing in cancer research for her postdoc, as she had originally intended, she found a post near her current location, where she will be working on protein probes for brain MRIs. Staying close allows her to keep her team of doctors, and she’s looking forward to working in a new field, at least for a while. “I just wanted a few years that didn’t involve cancer in any way,” she says.

Coping with an unexpected medical diagnosis is never simple, and few graduate students are prepared to deal with the dual demands of research and challenging health decisions. “There isn’t really a handbook to tell you what to do if you suddenly get sick in the middle of your Ph.D.,” says Yamini Kesavan Ranchod, who was diagnosed with breast cancer in 2010, as a third-year epidemiology Ph.D. student at the University of Michigan in Ann Arbor. Even so, with some flexibility, planning, and communication—and finding the necessary support systems—many find that a diagnosis doesn’t equal a career derailed.

After the diagnosis

There’s no one right way to manage an illness. Some graduate students prefer keeping up with work through treatments, taking time off as needed. Others choose to take extended periods of time off, either as a leave of absence or medical leave. When deciding on a course of action, balancing input from doctors, personal needs, and logistics is crucial. But figuring out what your institution and funding source will allow in terms of financial support and health insurance during a break can prove tricky. “Even two students in the same lab being paid on different grants can be subject to different medical leave policies,” says ecologist Catherine Peichel of the University of Bern, who advised a Ph.D. student who needed brain surgery. So, Ranchod explains, “you have to get all your resources together, whether it’s your department handbook or university documentation, [and] make a list of what all the different options are and what they mean for you.”

Many students who have gone through serious medical issues say that their advisers were key sources of support. Because good principal investigators (PIs) are invested in their students’ success, they’re often willing to make accommodations, such as continuing funding or stepping in to cover a student’s conference presentation, to help a student get through a tough time. “The most important thing,” says Peichel’s former student Joseph Ross, now an assistant professor of biology at California State University in Fresno, “is to have already met with your medical team, family, and friends, and be prepared with information to give your adviser so you can give straight answers when they have questions.” After Ross was diagnosed with an abnormal blood vessel connection in his brain that required surgery, he approached the discussion with Peichel as a negotiation. Being clear on what her expectations were, and finding middle ground that satisfied both their requirements, were key to keeping things smooth during his treatment and recovery. He ended up taking approximately 6 weeks off from work after his surgery—a solution that satisfied himself, his doctors, and his adviser, and set him on a path to continue pursuing his long-term plans for an academic research career.

Some find that academic culture works in their favor. Marie Coppola, an assistant professor of psychology at the University of Connecticut in Storrs and adviser to a student who underwent a cancer diagnosis and treatment, sees academia as being a more accepting work environment than industry when it comes to taking time off for medical reasons. “Everyone in academia is aware that your energy for projects ebbs and flows, so it’s much more flexible,” she says. Labmates can also provide valuable support, as Maithili Shah* discovered when she was diagnosed with leukemia in 2008, 18 months into her Ph.D. research in epigenetics at a large research university in the United Kingdom. She took a year away from the lab—most of it spent in the hospital—as she grappled with treatments, but her colleagues didn’t write her off. When they gave talks that cited her experiments, they credited her and often mentioned her plans to follow up on the work. “There was this whole narrative that I’d get better and return to the lab,” says Shah, who is now a postdoc at Massachusetts General Hospital in Boston. “It made me feel a lot more confident of getting back to things.” When she returned to lab, colleagues also stepped in to help with long experiments or those that posed health risks to her.

For others, though, academic culture can make students struggle with the decision to take time away from work. “There’s a certain pressure when you see people around you going to conferences or presenting their work. … It’s very hard to feel like you’re allowed to take a break,” says Ranchod, who at first chose to work through several months of active treatments—including chemotherapy and radiation—before eventually taking a 4-month medical leave. “It took me a while to realize that it was okay to take a step back and focus on my health. … In retrospect, I wish I had taken the leave earlier.”

Part of the reason she had hesitated was financial, when she was offered a teaching assistantship but could not commit to fulfilling her teaching responsibilities. In the end, she decided that taking medical leave—which would allow her to keep benefits such as health insurance (though she wouldn’t receive her stipend) without paying tuition or being expected to make progress on her research—was the right move. But, because taking a medical leave is uncommon, figuring out the logistics of doing so—financially, for health insurance, and in terms of completing her degree—required several discussions with her department and the university’s human resources team, Ranchod says.

Financial concerns were also one of the reasons that Akilah Wilson*, now a biology postdoc at the University of North Carolina in Chapel Hill, didn’t take a leave of absence when she was ill in grad school. For nearly 2 years, she experienced intense bouts of pain that repeatedly landed her in the hospital for days at a time before a team of specialists was able to diagnose her condition—a rare muscular disorder that affected her gastrointestinal tract, known as familial visceral myopathy with dysmotility of the large intestine. Wilson tried to keep up with her fruit fly experiments through this period, but the challenge of juggling hospitalizations, experiments, and her responsibilities as a teaching assistant made her wonder whether taking a leave of absence was the right move. Doing so would have lessened her stress and may have helped her cope with her condition, and, she says, “My PI was very supportive of the idea. … But stipends are already small, and I would get nervous about other life things—rent, car payments, and so on. That’s why I pushed through.”

Instead of taking a leave, she altered her schedule to work around her medical appointments, and had regular meetings with her adviser to come up with short-term work plans that accounted for the time she needed for medical tests, her teaching duties, and the status of her lab work. Both she and her adviser clearly laid out their expectations for her project’s progress, and then worked to find common ground. “At times it felt difficult to meet the goals we set to publish a paper, or constantly having to reconsider the progression of the project,” she says. “But keeping an open dialogue was important—that relationship with your PI is really important to being successful.”

Wilson also recalls several other crucial sources of support. Colleagues in the lab who helped her with lengthy experiments or stepped in when she needed to unexpectedly leave the lab were instrumental in keeping her work moving, she says. Graduate student friends who were further along in their degrees offered perspectives on maintaining work-life balance, and a professional counselor provided emotional support. “The thing that helped me the most was going to the counseling center on campus,” she says. “I recommend it for all grad students, but especially those facing difficult personal situations.”

Patient progress

Whether students take a break or work through treatments, some find it tough to get back into the pace and culture of academia, so it’s important for colleagues and advisers—and the students themselves—to be understanding. When Ross returned to working full days in the lab several weeks after his brain surgery, for example, he found it difficult to work as he had before the procedure. Peichel recalls noticing the lingering effects—and how she had to make a conscious effort to be supportive as he recovered. “He’s very smart, but there was a noticeable slowdown in his capacity for almost a year,” she says. Even so, it’s especially important to not pressure students at such phases, Peichel adds. “His expectations of himself were already high, so I tried really hard to be patient.”

For many who had cancer, “chemo brain”—thinking and memory problems that are a common side effect of treatments—can be persistent, as Shah discovered when she returned to the lab. Even as she recovered physically after completing her treatments in 2011, mild cognitive issues persisted. “I found it hard to formulate arguments. … I’d start making a point and then couldn’t find the words,” she recalls. “And in a scientific setting, where everyone is so smart and accomplished, when people see you as inarticulate or foggy they look at you like you’re in the wrong place or there’s something very wrong with you.”

To Baker, the lack of awareness of such issues during recovery was among the toughest things she had to face. “It takes a lot more energy to maintain my schedule than it did before I had cancer,” she says. And although her adviser was very supportive of her during treatments, she feels he and others don’t realize how long it takes to recover. “The effects of those things can last years.” 

Coping with cancer had a more subtle influence on Shah’s aspirations. She would still like to remain in academia, but “my diagnosis and experience definitely changed my resolve,” she says. “Earlier, I was prepared to not eat or sleep and have this high-octane career. I don’t want a life like that now. … I’d like to take time for lunch.”

*Names have been changed.

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