When is a patient cured of cancer? It’s debatable.
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It was one of those lousy late-fall New York evenings, cold and dark and sort of half raining and half sleeting. I walked out of my office and slipped on a patch of ice. It wasn’t much of a slip. I just twisted my left hip, then caught my balance. I went on my way. This was in November 2002.
The next morning, my hip hurt. I’ve had sports injuries over the years, and it felt like that—a torn ligament, maybe. I figured I’d rest it and it would go away. Then a few weeks went by and then another few weeks, and it still hurt. In January, I went to see my orthopedist.
He took X-rays but didn’t see anything wrong.
My hip kept hurting, but I didn’t go back to the doctor. I was 37 years old and healthy. A sore hip didn’t seem important.
Then in November, I realized a full year had passed since I had slipped on the ice. Not only had my hip not gotten better, but it had gotten worse. It hurt all the time. I couldn’t run. I felt a stab of pain whenever I coughed or sneezed. It was getting hard to pick up A.J., my 7-month-old daughter. It’s been a year, I remember thinking. It’s not going away on its own. I went back to my orthopedist, Dr. Lon Weiner, who ordered an MRI.
I remember worrying about getting claustrophobic in the machine; that was what I considered a major medical issue. But after I had the MRI, I basically forgot about it. Worst case, I thought, I might need surgery. A day or two went by, and I got a call at work: “Dr. Weiner wants to see you. He’s got your MRI results.”
This is how naive I was: I thought, Wow, that’s great. This guy is calling me with my test results before I even have a chance to call him. Five days after the MRI, I went back to Dr. Weiner’s office. The receptionist took me straight to an examination room.
One of the things about growing up in the television age is that we’ve seen all of the big acts of the human drama— weddings, births, deaths—played out before we’ve experienced them. What happened next had an eerie feeling of familiarity about it.
Dr. Weiner came in and closed the door. He sat directly across from me, fixed me with a professional gaze, and said, “I’ve got the results of your MRI. There’s a lesion on your hip.” Only this wasn’t ER, and Dr. Weiner’s voice, dispassionate as he tried to make it, contained an unmistakable trace of actual human horror.
“A lesion?” I said. “You mean a tumor?”
“Yes,” he said.
I was 38 years old, married to a woman I loved, working in the job I had long wanted, and living in the city I had dreamed about living in since I was a kid, in a lovely new apartment. I was the first-time father of a beautiful baby girl.
And with that single syllable, I had cancer.
At the time I learned I was sick, I was told I had between 18 months and three years to live. Thanks to revolutionary new treatments for my illness, many of which have been developed only in the time since I was diagnosed, that was more than 20 years ago. It is not a stretch to say I am a medical miracle.
I’m also at the center of a complex and consequential question being asked right now by oncologists and cancer patients: When is a cancer patient cured? The debate centers around the idea of what constitutes a cure for multiple myeloma, the to-date incurable but increasingly treatable form of blood cancer I have. And last month saw a major development in that conversation.
In a Myeloma Cure Summit held on Feb. 20 and 21 by the International Myeloma Society, an influential medical, scientific, and advocacy group, more than 500 oncologists, researchers, pharmaceutical industry representatives, patients, and patient advocates gathered to discuss the issue. What emerged was a groundbreaking proposal for how to define the term “cure” in myeloma.
Multiple myeloma is a cancer of the plasma cells. It starts in the bone marrow and attacks the body on several fronts. The cancerous plasma cells produce large amounts of an abnormal antibody called M protein, which builds up in bone marrow and forms tumors in bones, like the one in my hip. The destruction of bone tissue, in turn, releases calcium into circulation which can result in kidney stress. At the same time, M proteins can also cause the blood to thicken and concentrate in urine, both of which can cause renal problems. Myeloma cells can also cause a reduction in overall blood cell counts, which can lead to anemia, and a decrease in normal antibodies, which can lead to compromised immunity and an increased risk of infections. The criteria for diagnosing myeloma are sometimes described using the acronym CRAB: Calcium elevation, Renal issues, Anemia, Bone problems.
For many years, the illness was considered a death sentence, with a five-year survival rate of just 25 percent. In recent decades, however, dramatic advances in the treatment of the disease have allowed many patients to live for years, if not decades, after being diagnosed. In 2020, the five-year survival rate reached an all-time high of 62 percent.
One of those advances is a newly developed form of immunotherapy called CAR-T cell therapy that has doctors and researchers daring to speak the word cure for the first time. The treatment, one of the more promising breakthroughs in the history of myeloma, has allowed some patients (though by no means all, with some of the side effects also being very challenging, and even life-threatening) to remain disease-free for five years or more—a widely used benchmark for a cure in cancer. That unprecedented efficacy has sparked the debate about the use of the term cure in the myeloma community. (It bears noting that certain other cancers, like thyroid cancer, testicular cancer, and Hodgkin’s lymphoma, with five–year survival rates of 90 percent or higher, have been considered curable for some time, particularly if they’re caught early. It also bears noting that different cancer communities do have different definitions of cure.)
The International Myeloma Society’s new definition of “cure” is carefully worded. It reads: “Patients who are MRD-negative (meaning there are no myeloma cells detected among 1,000,000 plasma cells) and have been off all anti-myeloma therapy for five years may be considered cured.” Attendees of the IMS cure summit also specified that a cure should not involve irreversible side effects or second cancers and that patients should expect to have a normal life expectancy and quality of life.
The debate the new definition has triggered is this: Should the term cure be used at all? And if so, should it at least be qualified as a “functional cure” or “operational cure?”
Those oncologists, myeloma patients, and patient advocates who oppose the unqualified use of the term say it’s important to recognize that even if a patient has no evidence of the illness, it’s still scientifically unknown whether they are fundamentally and unconditionally free of it forever. Until the underlying biology of so-called cured patients is better understood, they say, it’s premature, and perhaps even irresponsible, to use the term.
Opponents of the term cure also point to the fact that the number of patients who have made it to the five-year mark without evidence of disease remains small and note that some cancer patients thought to be cured of their illnesses have relapsed after 10 or 15 years. With all that in mind, they fear the term cure can create a dangerous sense of false hope.
Other doctors and members of the myeloma community, however, see no need to hedge. If you have no signs of cancer for five years, you don’t have cancer, they say. Arguments to the contrary are overly cautious and pedantic.
Moreover, they say, the term cure offers hope to patients in the early stages of the disease and peace of mind to those who have been disease-free for five years or more. That sense of closure is invaluable for people who have spent years worrying about the possibility of a recurrence. Classifying a patient as cured also allows them to avoid intrusive, and sometimes painful, screening tests, like bone marrow biopsies. And some opponents of the term “functional cure” say it may lessen the urgency for achieving the ultimate goal: a complete cure.
Despite the fact that I’ve been living with multiple myeloma since 2003, I’m not cured, not even by the carefully worded terms of the new definition. Since my diagnosis, I’ve undergone multiple rounds of radiation therapy, chemotherapy, and immunotherapy, going in and out of periods of remission, when my cancer was temporarily dormant, many times. And even when I’ve been lucky enough to experience a respite from my illness, I’ve typically had to be on maintenance therapy to keep it in check. In July of 2023 I underwent CAR-T therapy. I achieved remission, but that was only two years and seven months ago.
Although they are otherwise very well aligned on the overall goals of myeloma care, my own two primary oncologists, each a world-renowned figure in myeloma research and treatment, respectfully differ on the “cure” question—or at least on some of the nuances involved.
Dr. Paul Richardson, who is the clinical program leader and director of clinical research at the Jerome Lipper Multiple Myeloma Center at the Dana-Farber Cancer Institute in Boston, and the RJ Corman Professor of Medicine at Harvard Medical School, is cautious about the use of the term. Myeloma is an extremely complex and challenging disease, even by the standard of other cancers, he says: “Please don’t say we’ve won against myeloma just yet, as I am concerned that the disease can prove us wrong.” His approach, at least for now, “is to always strongly encourage a positive and hopeful approach to treatment, with a focus on quality of life, minimizing toxicity, and improving long-term outcomes” for his patients, he says.
The word cure, Richardson says, is far-reaching, and while very laudable as a goal, doesn’t capture the current reality. “We may have a functional cure for up to 60 percent of our patients, which is wonderful, but we’re still not doing nearly as well for the other 40 percent. That’s a lot of patients to whom the term doesn’t now apply.”
Not only can the word cure generate expectations that may not be met and engender disappointment, he says, but it could also have unforeseen practical implications. “What if insurance companies and/or health care jurisdictions in other countries decide not to cover maintenance therapies because they consider the patient potentially cured by a particular definition? This could paradoxically lead to a patient being denied a potentially valuable treatment or to a care provider not being allowed to prescribe a treatment,” he says. “This, of course, could be detrimental, especially if applied in the wrong context.”
Richardson acknowledges the tremendous breakthroughs in myeloma care and is highly appreciative of them. “Ten years ago, we weren’t even having these conversations. The fact that we’re having them now is absolutely a positive thing and reflects remarkable progress,” he says, and he’s confident that more major advances are on the horizon. He recognizes that terms like cure and functional cure could be applied in a carefully defined way in certain subsets of patients and be beneficial, but he’s just not ready to declare victory. “I still think we need to have a measure of caution,” he says. “This is a disease that demands humility and patience, but for which I firmly believe there is great hope.”
Dr. Sundar Jagannath, network director for the Center of Excellence for Multiple Myeloma at Mount Sinai Hospital in New York, meanwhile, supports the use of the term cure. He says the hope it engenders can not only help people cope emotionally with a cancer diagnosis but can even motivate them to seek treatment. Instead of thinking, Why bother?, they think, This could be worth it. That’s especially important when you consider how daunting many cancer therapies are. He cites the example of a patient of his, a father of young children, who was influenced exactly that way, and is doing well. “Hope is a powerful tool,” Jagannath says.
Jagannath has treated patients with CAR-T therapy who have remained cancer-free for more than five years. “They’re cured,” he says.
Myeloma patients are also divided. Buoyed by CAR-T therapy and other advances, some are willing, if not eager, to use the term cure, while others, fearful that we don’t yet know enough to say even a small number of patients are for sure cured, remain cautious, if not skeptical, if only for their own emotional protection.
All told, it’s still rare, at least for now, for a myeloma patient to refer to themselves as cured or for an oncologist to refer to a myeloma patient that way.
Anne Quinn Young, the chief mission officer of the Multiple Myeloma Research Foundation, the country’s largest funder of myeloma research, calls the new IMS definition of the term cure “a watershed moment.”
The MMRF endorses the new definition, but carefully. “The fact that we’re even talking about a cure shows how far we’ve come,” Quinn Young says. But at the same time, she warns that researchers need to continue to fine-tune the definition of the term as the evolving science dictates. “We need to balance optimism with caution,” she says.
Quinn Young also notes that more needs to be done for patients who don’t respond successfully to treatment. “Our mission is to find a cure for all myeloma patients. In that sense, there’s still much more work to be done.”
How do I feel about the new proposal? It’s a difficult question. On the one hand, I understand the power of hope. Hope is as essential to a cancer patient’s mental health as chemotherapy is to their physical health. Without it, it’s hard to enjoy a moment, let alone a day, month, or year. In our darkest hours, hope is what keeps cancer patients going. It’s what gets us through our surgeries, chemotherapy sessions, and surveillance scans. I see how using the term cure can offer myeloma patients a powerful dose of that medicine, and I see the case for closure. And I would give almost anything not to have to worry about my next set of scans or blood tests or to undergo another marrow biopsy.
On the other hand, I understand that false hope is a toxic strain of that remedy. For many cancer patients and their loved ones, it’s easier to expect the worst and hope for the best than it is to expect the best, only to be cruelly disappointed.
In the end, though, I’m in favor of using the term cure.
Just minutes after I was diagnosed, one of my first thoughts was, “Please god, let me see my daughter graduate from high school.” I’ve now seen that. I’ve also seen her graduate from college. My wife and I went on to have a son, and he’ll graduate from high school himself this June.
I don’t know if hope played a part in those outcomes, but I do know that just the promise of new and better treatments has motivated me to do what I can to stay well and helped me live more happily along the way. Assuming it’s used narrowly and responsibly (and I can’t emphasize those qualifiers enough), maybe that one simple word, cure, can inspire even greater hope for myeloma patients. If so, I’m for it.
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