There is a classic image in cancer treatment of a patient triumphantly ringing a bell to commemorate the end of chemotherapy or radiation. When he completed 15 rounds of radiation to his metastatic kidney cancer, Shed Boren was offered the chance to ring the bell at his treatment center. Though he did so, the ritual, he said, felt “performative,” hardly the celebration that was intended.
When Mr. Boren was diagnosed this past summer at age 60, he said his goodbyes to his elderly parents and selected the music for his funeral. His cancer has, remarkably, responded to immunotherapy and most of his metastatic disease has melted away. But he knows that he will never be cured. Even if his cancer continues to respond to treatment and he lives for years longer, such an advanced cancer will always be with him.
When I was training to become a doctor not so long ago, a Stage 4 cancer diagnosis like Mr. Boren’s meant that the end was almost certainly near. Now, drugs that harness the body’s immune system and target cancer cells have created a class of people for whom advanced cancer is more like a chronic disease. But such a change in fate comes with a psychological burden. If you knew you had a year or less to live, you would make certain choices. If you suddenly learned that your one year could extend to five — but then again it might not — you may feel unmoored amid your relief. Do you continue to work? Do you commit to new relationships, to children?
Though medicine has made extraordinary strides in extending life, we have yet to learn how to prepare patients for the kind of life that gets extended. Oncology can offer a bell to ring, but no script for “you are not cured, but you are also not dying.” The absence of that script is itself a kind of harm, leaving patients and their families to find their way through the uncertainty alone.
In his early conversations with his oncologist, Mr. Boren learned that he would die in months without treatment. But with treatment, there was a chance that his cancer would respond, and he would live for months or even years. The cancer studded his lungs and had eaten away at the bones in his hips. He could barely breathe. Shortly after diagnosis, he started on immunotherapy, a two-drug cocktail that has transformed outcomes in people with even very advanced kidney cancer.
“I could feel the disease burden going away, but I still had the constant thought of death,” Mr. Boren said, referring to when his cancer started responding to treatment. Though he was ultimately able to return to teaching social work classes, he finds himself grieving the loss of control over his future. He does not know if cancer will ultimately shorten his life, and if so, by how long. When doctors tell him his disease is “stable,” he knows this is good news, though doesn’t quite feel like it. The cancer is always there.
Mr. Boren will need to take his cancer drugs for the rest of his life, most likely, or until his disease progresses, at which time his treatment will shift. He doesn’t know how to plan his life. “When your life is so future-focused, what do you do if you might not have a future?” he asks.
On a recent visit, a doctor was very clear with Mr. Boren and his husband that the cancer would never be cured. Even though Mr. Boren knew that to be true and maybe it needed to be said aloud, hearing it said so clearly felt cold, jarring. “We’re already living in the gray. How that truth gets delivered really matters,” he told me.
The experience has reminded Mr. Boren of when he worked as a social worker with H.I.V. -positive patients and early antiretroviral therapy started saving lives. In some ways, he said, it was easier to work with people who were dying than those who were living with H.I.V., but not yet sick. “With end-of-life, we knew what to do,” he said. “In the gray zone, you have to keep figuring it out.”
I’ve spoken to a mother in her 40s, with metastatic lung cancer that has progressed through one drug and is responding to another, who balances her awareness of her mortality with the ordinary work of parenting two teenagers. A grandfather, also with metastatic lung cancer, told me about a cough this past winter that sent his wife into a panic. It turned out to be nothing. But the stress of every minor symptom is something he and his wife now live with.
In some ways, these are patients that oncology was not built to care for — at least not oncology as it is now, with the battle metaphors and the bell. They live inside a kind of medical uncertainty that lingers not as an acute crisis or slow demise, but something different. Yet clinicians have only just begun to figure out what care for this population should look like.
Dr. Leah Rosenberg, who practices palliative care at Massachusetts General Hospital, told me that 15 years ago, many patients with metastatic cancer expected to live a few months. Now she and her colleagues counsel patients on how to navigate a potentially long life with serious cancer. They help these patients develop tools to make decisions about jobs and houses and how to be present with the people they love in a timeline that keeps shifting.
The reality is that at some point, there may not be another wonder drug to try, and a patient’s cancer can no longer be kept in check. For oncologists, this is a particularly hard conversation to have. Dr. Ann LaCasce, a lymphoma specialist at Dana-Farber Cancer Institute, told me that her patients have almost come to expect that there’s something else when they have a recurrence: “You’ve pulled me out of the fire once, what do you have now?” But the reality is that sometimes, there isn’t anything else. And that is hard to come to terms with, both for patients and families but also for a doctor who has been able to deliver more time once before.
Treating patients who live in what Mr. Boren calls the gray area is not an entirely new phenomenon for medicine. Mr. Boren’s parallel to H.I.V. is one example. Patients who receive organ transplants are another. They live with the constant potential for organ rejection, and the best care for them integrates mental health, social work and conversations about symptoms alongside their medical management. Palliative care, such as what Dr. Rosenberg provides, should be essential for patients with Stage 4 cancer on lifelong therapy, even if they are not yet at the end of their lives.
These changes need to be made alongside a broader cultural shift in how medicine, and oncology particularly, talks to patients. The battle metaphors, the survivor language and the bell were all built for a world in which disease has two binary outcomes: alive or dead. These are no longer the only possibilities. The patients I spoke with did not talk to me about winning or losing a battle with cancer, but about their need to figure out how to live well in the gray.
Mr. Boren’s oncologist, Dr. Rohan Garje at Baptist Health South Florida, told me that his advanced-cancer patients will ask him when it’s their turn to ring the bell. Which is really a way of asking when they can consider themselves in the clear. But for many patients, there is no end to the treatment — and no clear moment when a life can be declared resumed.
There is no bell for this kind of survival. So Dr. Garje and his colleagues tell their patients to ring the bell whenever they want. If they are feeling great, they should go for it. Why wait? “Let’s do it today,” he says.
Daniela J. Lamas, a contributing Opinion writer, is a pulmonary and critical care physician at Brigham and Women’s Hospital in Boston.
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