Personal experiences with cancer help clinicians ‘share the journey’ with patients

Christian S. Hinrichs, MD, is reluctant to give cancer credit for anything good.

He admitted, however, that his personal experience with the disease played a role in guiding him toward a career in immunotherapy research.

“It’s a strange thing, but my career path almost certainly would have been different if it weren’t for the cancer,” he told Healio. “I don’t know that I would have ended up doing the research I’m doing.”

Hinrichs had completed two surgical oncology fellowships and was fully trained as a surgeon when he was diagnosed with ocular melanoma, which led to the removal of his right eye.

“After the eye was removed, I realized I was not going to be able to do surgery anymore,” he said.

Hinrichs kept the impact of the cancer on his life in perspective.

“I had cancer,” he said. “So, I was mostly grateful not to die.”

Hinrichs didn’t take long to pivot professionally. He had been doing preclinical laboratory work and had begun to take an interest in improving therapeutic T cells for cell therapy. Yet, he didn’t forget the often-overwhelming psychological and emotional burdens faced by individuals with cancer.

“A lot of my patients struggle with uncertainty — with never knowing for sure whether the cancer will come back,” he said. “For me, it’s been a long time, so I’m relatively certain, but it’s never 100%. So, that’s something I commiserate with my patients about.”

Although medicine historically has encouraged clinicians to maintain a professional detachment, this paradigm may have shifted in recent decades. With an increased focus on work/life balance, the image of the stoic, superhuman physician with no personal needs or motivations may be dissipating, as well.

Some physicians are not only acknowledging their personal histories with cancer but have come to embrace these stories as an important source of meaning and professional identity.

“I think when you really dig down into why people enter this field, it’s usually a combination of the head and the heart,” Mark A. Lewis, MD, director of gastrointestinal oncology at Intermountain Healthcare in Utah, said in an interview with Healio. “You can absolutely love the science and the incredible pace of research and progress, but in my experience, that doesn’t sustain everyone emotionally, and it doesn’t necessarily explain the pull to the field in the first place. When I scratch the surface just with my peers, almost all of us have had some sort of personal encounter with cancer.”

A successful pivot

After coming to terms with the loss of his eye and his surgical career, Hinrichs went back to residency and fellowship to train in internal medicine and then medical oncology. As a medical oncology fellow, he initiated a clinical trial using tumor-infiltrating lymphocytes to treat cervical cancer.

“We had some success in the first nine patients with cervical cancer, and I published this in Journal of Clinical Oncology,” Hinrichs said. “Two of the nine patients with cervical cancer — and this is advanced, metastatic disease — had their tumors go away and stay away. They’re both 8 years out with no cancer.”

Hinrichs has gone on to build a career in immunotherapy research focused on developing treatments for cancers that originate in epithelial cells. He is also developing new treatments for HPV-associated cancers and has discovered genes for T-cell receptors that target HPV.

In 2015 he was chosen by the NIH as a Lasker Clinical Research Scholar, and earlier this year he was appointed chief of the section cancer immunotherapy at Rutgers Cancer Institute, New Jersey’s only NCI-designated comprehensive cancer center, where he has continued his research.

Hinrichs said he was fortunate in that he had not gotten far into a surgical career when he found himself forced to consider another option.

“I also had a bit of an obvious potential new career direction — I was already in the lab. I’d been there for a few years at that point,” he said. “So, I had multiple possible career directions.”

In his work to develop new cancer treatments, one goal Hinrichs constantly strives for is to find a one-time treatment that can eliminate cancer entirely. He noted that this was in part influenced by his own experience with cancer.

“One of the themes of my research is that I don’t want a treatment that will slow it down by weeks or some other finite amount of time,” he said. “I want something that can eliminate the cancer and solve the problem so that the patient can go on with their life.”

The ‘eureka moment’

Lewis learned about the cancer that would change his life not from a physician, but from the U.S. Embassy.

“We thought my father was in excellent health at the age of 42 when my family immigrated from Scotland to America,” he said. “Part of that process involves getting a chest X-ray, to make sure that new immigrants aren’t harboring tuberculosis. So, we got a call from the embassy — not a doctor breaking the bad news, but a government agency — saying that my dad’s chest X-ray was abnormal. That was the harbinger of his cancer diagnosis. My whole childhood changed after that.”

Lewis’ father was near death when Lewis was 11 years old, but his doctors were able to stabilize him, effectively treat him and give him 3 more years of life.

“They really brought him back from the precipice. It was an amazing thing,” he said. “He died when I was 14, and that sent me down the path of wanting to do oncology. I was amazed by what cancer physicians do. Also, in an immature way, I thought, ‘this is how I get revenge on my dad’s cancer.’”

Unfortunately, revenge was not in the cards.

“Fast-forward to my 20s, I was a resident and working very hard,” Lewis said. “I was having abdominal pain, but frankly I just thought that was the price of training. Finally, I was diagnosed with having high calcium levels — this was just as I was starting my oncology fellowship. That was my eureka moment, because my father had suffered from that, too.”

Lewis knew there were only a few possible explanations for the high calcium levels. Ultimately, the young physician was able to use his training to diagnose himself with the same condition his father had: a genetic defect called multiple endocrine neoplasia type 1 (MEN1). This condition predisposes those who live with it to benign or malignant tumors in their endocrine organs.

Lewis underwent surgery for his condition, which has long been managed as a chronic disease. However, upon learning of his own cancer as an oncology trainee, his perspective changed again. Lewis found he was less motivated by an adolescent quest for revenge, and more inspired by empathy for his patients.

“That has really made my education resonate in a whole different way,” Lewis said. “Even now, it’s given me empathy that I can rely upon in my practice. What I’ve found is that you can have the most brilliant mind in the world, and you can memorize all the statistics you want, but a lot of oncology — maybe the heart of oncology — is connecting with your patients.”

Lewis has not attempted to conceal his cancer from patients. He has written and published online articles discussing his personal survivorship story.

“Maybe my diagnosis came at a moment in our history where there was a turning point, and there was recognition that doctors are people, too,” he said. “A lot of my faculty have said to me, ‘I’ve had this tumor’ or ‘I’ve had cancer, too.’ It was really meaningful to me that they would share that.”

Lewis has learned that his son carries the genetic mutation for MEN1, but he and his family are very prepared and equipped to handle it as a chronic condition.

“I’ve told him that he is going to have a chronic condition, and one that can be managed with a lot of foresight,” he said. “I think that forewarned is forearmed. Many patients are blindsided by this diagnosis, but I have the opposite situation. I have a very long view of what’s coming, and my wife is a pediatrician. We’re not that worried about the future, because we feel as though we’re as prepared as anybody to deal with the health challenges this presents.”

Because he has been public about living with MEN1, Lewis has attracted patients with this and other rare cancers. He has made a point of encouraging patients with these conditions to adjust their mindsets in terms of being “cured.”

“I tell them one of the things we need to do is think about this differently,” he said. “If I can’t cure you, we need to consider this a chronic illness we are going to work on controlling together. Not everybody is able to turn that corner psychologically, but when they do, it really changes the way we approach their disease.”

Flattening hierarchies

Liz Salmi never planned on a career even remotely connected to science or medicine — she was always more of a word person.

“My background was in digital communications,” Salmi told Healio. “I wasn’t a STEM person; that was not the plan. It had never occurred to me to pursue any sort of medical career.”

In 2008, when Salmi was 29, that all changed.

“I had a massive seizure, went to the hospital and learned I had a malignant brain tumor,” she said.

After a 9-hour surgery that led to a diagnosis of grade 2 astrocytoma, Salmi underwent two craniotomies and 24 months of oral chemotherapy. She had to relearn how to walk and took medicine to control subsequent seizures.

During that difficult period, she found community among cancer survivors and patients with brain tumors.

“As a person living with a brain tumor, I wanted to connect with other people living with cancer,” she said. “And I learned that it wasn’t just the patients with cancer I felt I could connect with; it was specifically the other patients with brain tumors, because we were all dealing with this brain/oncology experience.”

When Salmi’s treatment ended, she began to rebuild her life, but her interest in cancer and neurology continued.

“I started thinking about working in health care,” she said. “I decided that the logical transition for me was to work in communications within a health care nonprofit. I did that for a number of years.”

As the director of communications for a statewide nonprofit in California, Salmi took some of the complicated medical concepts she had learned and made them easier to understand for the community and the public.

“That also exposed me to working with researchers and clinicians — you go to these conferences and you’re reading papers, and I was learning to soak up that information,” she said. “I believe everyone has the capacity to read a research paper and get the gist of it, but as regular people, we’re usually not exposed to that kind of writing. It’s not as freely accessible.”

Salmi began diving deeper into research papers, and as she gained an understanding of the writing, she felt compelled to “translate” the complicated material into simple, clear terms.

“I had fun reading these papers, articles and research and filtering it through my patient brain,” she said. “Then, when I spoke with patient friends and advocates, I found myself explaining a lot of these concepts to them.”

Eventually, she was hired to work at OpenNotes, a research group housed at Beth Israel Deaconess Medical Center, in a job she holds remotely from California to this day. Open Notes promotes transparency in health care, especially through sharing and utilizing visit notes.

“I was hired specifically because of my communications skills,” she said. “These are research teams doing all this great work, and an important part of research is dissemination and translation of these concepts back to clinical practice settings.”

Salmi’s ability to speak specifically to oncologists and oncology audiences is another important skill set in her work. In addition to being an invited presenter at major medical conferences such as ASCO Annual Meeting, she has also been involved in conducting research and has approximately 30 publications to her name. She said serving as an intermediary between patients and clinical researchers enables her to use her communication skills to raise awareness of topics about which she is passionate.

“These stakeholder engagement processes of bringing researchers and patients into the same room is intimidating for a lot of researchers, because they don’t know where to start,” she said. “And patients don’t know what we know. So, I’ve been in the middle of that as a co-investigator. My role is to bridge that gap and make sure the right education is provided and everyone is comfortable. I want to flatten the hierarchies that maybe stop patients from asking questions for fear of looking stupid. Flattening the hierarchy in those relationships is what I’m excited about.”

‘You’re one of them’

Rebecca H. Johnson, MD, was an internal medicine/pediatrics resident aged 27 years when she noticed a tiny, painful lump in her breast.

“I was very sleep-deprived and tired, and cancer never entered my mind because it was a painful lump and I’d heard cancer was painless,” Johnson, now a pediatric hematology-oncology specialist and medical director of the adolescent and young adult oncology program at Mary Bridge Children’s Hospital/MultiCare Health System in Tacoma, Washington, said in an interview with Healio. “It grew over the next several months, and I finally realized it was really bothering me.”

One day, with a few minutes to spare, Johnson walked down the hall to the OB-GYN clinic, where she had some friends, and asked them to check it out. She was hoping to be reassured, but instead a fine-needle aspiration showed no fluid, meaning the lump was not a cyst.

“They said, ‘Oh, you need a biopsy,’” Johnson said. “The good news was I had it done promptly, because it was the hospital where I worked. The bad news was that it ended up being invasive cancer.”

Given the choice between mastectomy or lumpectomy and radiation, Johnson chose mastectomy.

“First of all, I wanted the cancer out, but secondly, I was definitely not going to choose to take a break from work every day for 6 weeks to get radiation, so a lumpectomy wasn’t really on the table,” she said. “So, I had the mastectomy. Residency programs were a bit more flexible in those days. Now, they count every single day, and you could be delayed starting your fellowship if you need 2 extra days off.”

After taking approximately a week and a half off for the surgery, Johnson went back to work and initiated chemotherapy. This was in the 1990s, before routine availability of antinausea medications such as ondansetron.

“My oncologist said, ‘Well, we’re going to start you with some Phenergan [promethazine] and Compazine [prochlorperazine, PBM Pharma] and see how you do,’” Johnson recalled. “And I said, ‘I’m going to be working in clinics while taking these; is that really the right thing to do?’ And he said, ‘Yes, some people tolerate it.’”

Instead, Johnson had a dystonic reaction while in the clinic treating patients.

“All of a sudden, my jaw tightened up and I couldn’t talk,” she said. “I went into the back room, and my residency director grabbed some Benadryl [diphenhydramine, Johnson & Johnson] from the pharmacy. I was better in a half an hour, but it was really disconcerting.”

Nevertheless, Johnson kept working through her chemotherapy treatments. During this time in her life, she said she noticed two immediate changes. The first was something positive that would serve her well for the rest of her career: she became a better physician.

“I suddenly could understand how scared everyone was in a way that I had never been able to before, because of my firsthand experience,” she said. “It was hard for a while to empathize so completely and directly with every patient, but ultimately, I’m so glad I have that.”

The other change she noticed was less empowering: she found herself being treated differently by a few of her medical colleagues.

“Residents are generally a very young, healthy, active group. On several occasions we’d be having an animated conversation about patients, and I would happen to mention my own diagnosis or chemotherapy. The collegial discussion would suddenly turn into something else,” she said. “All of a sudden, it was as if a veil came down over their eyes, like a curtain descending. I would sense the sudden attitude of, ‘Oh, wait — you’re one of them.’ And immediately, on a couple of occasions, a colleague would blurt out something insensitive like, ‘well, it’s not a sure thing that your chemotherapy will work, you know.’

“It was chilling because, suddenly, in their eyes, I went from being part of the healthy team that was curing the sick to being one of the sick, who might die,” she added. “The sudden off-putting words were a distancing maneuver of those colleagues, I think. In their minds, they wanted to put me squarely in the group of sick people, away from themselves. They wanted to separate themselves from that group and not think about their own mortality.”

Johnson said she also sometimes encountered this message to emotionally distance from patients as part of her medical training.

“I sometimes heard physicians teach students that doctors should put a wall between themselves and the patient, that that is the only way to be healthy,” she said. “But in fact, from the day I was diagnosed, I would look at every patient that I had and think, ‘They’re me. I’m them. We are all each other.’ And so, how can you put up a wall? Why would you put up a wall?”

Johnson ended up doing fellowships in pediatric hematology/oncology and clinical genetics, and she decided to make oncology her career. She said in this setting, her ability to practice without walls proved to be an asset.

“When I got into oncology, I realized that not distancing myself and staying with people, even though bad things are happening, had become my skill set,” she said.

She now believes that medical schools should dedicate time to teaching and supporting students in coming to grips with their own mortality.

“Once we accept that we’re all mortal, we can make our clinical encounters all about our patients and not a reflection of us and our own fears,” she said. “I think our goal in medical education should be to get doctors to the place where we can go there with people, and it’s not too scary for us to share the journey. Because sometimes things go well and people are cured, and sometimes people die.”

Navigating the future

Emily K. Browne, DNP, RN, CPNP, pediatric nurse practitioner and director of the transition oncology program at St. Jude Children’s Research Hospital, knows a thing or two about long-term cancer survivorship — she’s living it.

Diagnosed with acute lymphoblastic leukemia during her senior year of high school, Browne finished cancer treatment at age 20 years. As she prepared to embark on a career, she found her cancer experience had a profound impact on her direction.

“I always planned to become a teacher. I knew I wanted to work with kids,” Browne told Healio. “But when you survive cancer, suddenly everything you’re used to goes out the window, and you lose a safety net from under you. As an adolescent and a young adult, I really was questioning what cancer was going to mean for me long-term. I personally struggled with what to do with this thing — how much do I bring it along with me for the rest of my life?”

Browne had been inspired and impressed by some of the nurse practitioners who were involved in her treatment. She began to consider a new career path — one that would enable her to assist young cancer survivors while also honoring her own past.

“My mom kept encouraging me to do it. She said, ‘Look, you’ve been exposed to this, you’re smart, you can help these kids,’” Browne said. “I really liked the hands-on, direct patient care. Also, the role of the nurse practitioner was something I hadn’t known about previously and it really appealed to me. So, I read more about it and I was sold. I thought, ‘This is what I have to do.’”

In her current role, Browne often juggles administrative responsibilities with patient care. She helps survivors access resources within their schools and communities, acting as a liaison between local health care providers and the oncology team. She also helps overwhelmed parents in guiding their children through this difficult transition.

“I reach out to families between their visits, to help them problem-solve and get pointed in the right direction,” she said. “I had a mom email me the other day that her daughter was starting to struggle academically, and I got her matched up with our school advocacy coordinator to make sure those needs were addressed. The day before, it was someone whose son was having some symptoms of depression. So, we helped him identify mental health resources in his community. I’m helping families to navigate their lives after cancer. The goal is not so much to ‘go back to normal,’ but to find a new normal.”

For more information:

Emily K. Browne, DNP, RN, CPNP, can be reached at St. Jude Children’s Research Hospital, 262 Danny Thomas Place, Memphis, TN 38105-3678; email: emily.browne@stjude.org.

Christian S. Hinrichs, MD, can be reached at Rutgers Cancer Institute, 195 Little Albany St., New Brunswick, NJ 08903-2681; email: ch977@cinj.rutgers.edu.

Rebecca H. Johnson, MD, can be reached at Mary Bridge Children’s Outpatient Center, 311 South L St., West Wing, First Floor, Tacoma, WA 98405; email: beckyj100@gmail.com.

Mark A. Lewis, MD, can be reached at Intermountain Health, 171 Cottonwood St., Bldg. 1, Suite 610, Murray, UT 84107; email: mark.lewis2@imail.org and follow him on Twitter @marklewismd.

Liz Salmi can be followed on Twitter @TheLizArmy.