What my kidney cancer is teaching me about serendipity and persistence

During the height of World War II, an artillery shell fired by German forces landed 10 feet from my grandfather. It didn’t explode. Before he died last year, he would take stock at family gatherings and marvel, “Look at all that was possible because that shell didn’t go off.”

I’ve recently learned that sometimes the shell actually does explode. Earlier this year, I was diagnosed at the age of 33 with an aggressive form of kidney cancer. The diagnosis came suddenly after excruciating back pain and seeing blood in my urine led me to have a CT scan one Friday afternoon. It was only in hindsight that I appreciated the significance of the last month’s unexplained weight loss and night sweats.

Of the many things going through my mind on the night of the diagnosis, the one that kept rising to the top was, “This was not supposed to happen to me.” I know that people are told every day they have cancer. As a doctor, I’ve seen this scenario unfold before my eyes — but to other people.

When I was in medical school, I remember being shocked that even in healthy young bodies, some cells are naturally predisposed to mutate and develop into cancer. Fortunately, they are generally held back by a multitude of protective mechanisms. Back then, I wondered with naïve curiosity how it was possible that most of us didn’t have cancer when all it takes is a couple of faulty tumor suppressor genes or a mutated proto-oncogene.

But I slept fine at night for 10 years, knowing that I was, indeed, young and healthy, and that while I might not understand how or why bodies worked that way, they worked — until I was standing in the foyer of our home hugging my wife, whispering that somehow we were going to get through this together simply because we had to.

It occurs to me now that those words mirrored the actions of my cancer cells. It takes a certain tragic serendipity for cancer to exist, but its persistence is what makes it blossom into a life-threatening illness.

My cancer cells — like all cancer cells — are programmed to survive and grow. Through no fault of their own, they have genes that help them divide faster than neighboring kidney cells and stave off death, even in the low-oxygen environment of a kidney tumor that other cells simply can’t bear. Cells from many different kinds of tumors, including my own, even develop a “do not disturb” signal, a protein called programmed cell death ligand-1 (PD-L1), to hold off the immune system, not because they are clever but because the ones that didn’t survive were probably killed off by the immune system.

If the primary tumor in my kidney had the chance to shoot off cells to colonize my lungs or liver or bones before it was cut out of me, it wasn’t because it was following some faulty code of ethics aimed at killing its host — me — but because of an insuppressible drive to survive in spite of many other signals telling it to die off.

After my diagnosis, I, too, shifted into survival mode. As an assistant professor at Harvard Medical School and a psychiatrist at Beth Israel Deaconess Medical Center, I had the advantage of working in a world-class institution and down the street from one of the premier cancer centers in the world —the Dana-Farber Cancer Institute. The director of my center at Beth Israel Deaconess knew another faculty member who had been diagnosed with kidney cancer, and pointed me toward a magnificent team of oncology and surgery specialists at Dana-Farber and Brigham and Women’s Hospital.

The necessary short-term actions were quickly outlined by my expert medical team — Dr. Toni Choueiri, nurse practitioner Ally Mulloy, and Dr. Steven Chang. Within seven days, the tumor, along with the rest of my left kidney, had been removed. Because my cancer had a high likelihood of recurring, I started an experimental immunotherapy regimen aimed at preventing that from happening.

I returned to an eerie simulation of my old life. It seemed like I was the only one who could tell that everything had changed, and it made me uneasy — but also motivated — to have such an altered viewpoint. I decided that, if for no other reason than my own mental well-being, the status quo wasn’t going to suffice. I wanted to do more, not just for myself but for my 2-year-old son who has a father — and three other relatives — who have been diagnosed with kidney cancer. What I yearn for more strongly than watching with my wife as he grows up is to know that he won’t have to face this disease as I have.

I began to write about my experience as a young physician living with cancer in medical journals and other platforms. Writing gave me an outlet for coping, and also helped me give voice to others experiencing the same struggle.

About a month after my diagnosis, I connected with Dena Battle, who had read one of my essays. She had lost her husband to kidney cancer a few years before. Needing to do more, she started using the skills she had developed as a legislative director and policy lobbyist in Washington, D.C., and created the Kidney Cancer Research Alliance (KCCure), a grassroots organization of patients, caregivers, doctors, and medical researchers dedicated to accelerating research toward a cure. I decided to help out with the organization’s fundraising efforts.

Last year, KCCure awarded its first-ever innovation award to Dr. Wayne Marasco, a Dana-Farber researcher. His lab is attempting to discover and operationalize immunotherapy against multiple cancers, including kidney cancer. Knowing that the lab was just up the street from where I work, Dena arranged for me to meet with Marasco and his team to discuss their progress.

In that meeting, I learned that the Marasco lab’s approach taps into the strength of patients’ immune cells. They are engineered in the lab to be CAR-T cells, great numbers of which are generated and infused back into the patient. They attack only those cells that carry antigens unique to the cancer. Similar approaches are already being used against blood cancers with great success, but using CAR T-cell therapy in solid tumors has been elusive because the tumor microenvironment suppresses the activity of immune cells.

New immunotherapy techniques, such as checkpoint inhibition, may allow this technique to be extended to solid tumors like those found in kidney cancer. Based on promising animal work, Marasco and his colleagues hope to launch clinical trials in humans in the near future.

What I didn’t know when I set up the meeting with Marasco was that his life course was also irreparably altered by kidney cancer. About 15 years ago, he told me, his family was in Hawaii celebrating his daughter’s completion of chemotherapy for leukemia. For fun, he went on a run up and down a volcano. It was a vigorous workout that put just enough pressure on his kidneys to produce the first visible symptoms of disease — blood in the urine. That run was fortuitous because it detected his kidney cancer early. While in his hospital room recovering from surgery, Marasco began working on his first immunotherapy research grant proposal for kidney cancer.

When I think about all of the circumstances that had to go just right for me to be born and just wrong for me to be diagnosed with kidney cancer, I realize there is so much serendipity in this world that it cannot be understood or predicted. The same universal chaos that caused an artillery shell not to explode 75 years ago — allowing me to exist at all — also led to my diagnosis. It’s the same mysterious force that connected me to a stranger a thousand miles away with a foundation that sent me to meet one of the scientists working to find a cure for kidney cancer just down the street, who had his own serendipitous route to studying it.

I cannot possibly predict what comes next for me or the millions of other people with cancer trying to survive right now. What I do know is that I will contribute however I can to fighting kidney cancer and that, like the cells that threaten my life, I will persist.

Adam Philip Stern, M.D., is the director of psychiatric applications at the Berenson-Allen Center for Noninvasive Brain Stimulation at Beth Israel Deaconess Medical Center and an assistant professor of psychiatry at Harvard Medical School.