Imagine you have this growth in your body, cancer, the Big C. Society has indoctrinated you into believing that you must wage all-out war to defeat it—beat it before it beats you, kill it, excise it from your body—before it kills you. The martial metaphors abound.
But when she found out she had non-Hodgkin’s lymphoma, Nancy Hughes, a 47-year-old patient at Memorial Sloan-Kettering Cancer Center in New York City, opted for a different approach. Instead of moving aggressively to kill or remove the tumor from her body, she decided to enter into a program of carefully watching the tumor for any changes.
“I remember thinking, this is insane,” Hughes recalls. “I have cancer, you have to get rid of it. And I think that’s everybody’s initial response.”
Doing nothing is a hard sell to people living with cancer.
Well, not exactly nothing. But yes, holding off on chemotherapy, radiation or an operation right away and deciding to weigh the burdens of treatment—both physical and financial—against the risk of the cancer growing and spreading out of control. Watch the cancer (with imaging tests and biopsies, if necessary) to see if it gets bigger—or if it just doesn’t do anything.
Active surveillance, a well-documented and increasingly common approach for monitoring prostate cancer in men, is gaining traction in many other types of cancer, from kidney to thyroid to breast and lymphoma. As with prostate cancer, active surveillance of cancers in other organs involves a selective approach; it’s only for low-grade, early-stage, and slow-growing tumors, and only for people expected to outlive the course of their disease and who aren’t anxious about the idea of living with the disease.
The appeal of active surveillance in prostate cancer, besides sparing men the side effects of radiation or surgery to treat a disease that may not reduce their life expectancy, is cost effectiveness. One study found that active surveillance in prostate cancer could save the health care system $1.32 billion a year nationally. Another study found active surveillance in prostate cancer can result in a net per-patient savings of $12,194 at five years and $4,329 at 10 years compared with immediate treatment.
But it’s not so easy to get people with cancer to broker a conditional peace with disease. Like real war, the war on cancer for the unwilling participants who are patients, to paraphrase Civil War General William Tecumseh Sherman, can be hell. The side effects of the treatments, not to mention the cost, can be debilitating. A 2013 article in the journal Clinical Thyroidology reported that people with cancer are twice as likely to declare bankruptcy than people who don’t have it. And yet, people seem willing to wage that war. Results of a 2005 (granted, that is getting to be some time ago) survey published in the journal Medical Decision Making found Americans would overwhelmingly opt for cancer treatment even if it reduced their overall survival. The bluntly worded title of the article: “Cure Me Even If It Kills Me: Preferences for Invasive Cancer Treatment.”
Active surveillance is gaining acceptance because of greater public awareness about cancer—think of the surge in colonoscopies after Katie Couric had one—and improvements in screening and access today detect many cancers at an earlier stage. Medical imaging and diagnostic techniques have translated into better tools for monitoring small tumors and slow-growing cancers. More effective treatment means patients and doctors are more willing to hold off on immediately treating a cancer. Doctor-patient relationships are less dominated by doctors, so there’s a check on doctors who push treatment at all costs; shared decision making has made some inroads. Don Liss, MD, vice president of clinical programs and policy at Independence Blue Cross in Philadelphia, notes that despite all the professional guidelines about how and when to treat cancer, “in many circumstances there are lots of gray areas.” With no set path forward, active surveillance might be a choice.
The escalating cost of treating cancer may be another factor. In addition to putting individuals into bankruptcy, cancer treatment is eating up larger and larger chunks of Medicare and other budgets. The National Cancer Institute estimates that cancer care costs the United States $147 billion annually, and the cost curve bends north in every projection.
But active surveillance, with its many appointments, imaging tests, and biopsies, is hardly a free lunch. Definitive cost-effectiveness research is hard to come by, according to some doctors. “There needs to be more robust analysis of costs for each situation where surveillance is feasible,” says Bradley C. Leibovich, MD, chair of urology at the Mayo Clinic.
However, in a study published last year, Massachusetts General Hospital researchers compared the lifetime cost of active surveillance for breast cancer to prophylactic mastectomy and found that surveillance actually costs more—up to $2,000 more than a single prophylactic mastectomy and up to $21,000 more than mastectomy of both breasts. The cost variations depend on the type of reconstruction these patients undergo after mastectomy.
Emad Kandil, MD, an endocrine surgeon and thyroid specialist at Tulane University in New Orleans, was the lead author of an opinion piece discussing the treatment–active surveillance tradeoff published in JAMA Otolaryngology—Head & Neck Surgery earlier this year. Thyroidectomy for papillary thyroid microcarcinomas removes the primary tumor and decreases the need for further intervention. But the favorable outcomes may be because the microcarcinomas are slow growing, and Japanese researchers have reported similar outcomes when patients were in active surveillance programs, Kandil and his coauthors noted. That might argue for more active surveillance of patients with papillary thyroid microcarcinomas. But the plot thickens once you factor in costs. Active surveillance programs aren’t free, and patients may eventually need surgery. Yet Kandil says thyroid cancer is one of the most common cancers that affect out-of-pocket liabilities for patients with cancer, so overdiagnosis and overtreatment is a concern.
Primary factors to consider when evaluating cost and value of treatment options for papillary thyroid microcarcinomas (PTMCs)
|Factors to consider||Lobectomy||Total thyroidectomy||Ideal cases||Patients who proceed to surgerya|
|Initial cost estimatesb||$7,615 plus postoperative follow-up||$8,565 plus postoperative follow-up||Cost of follow-up surveillance onlyc||Follow-up surveillance, surgery ($8,565–$13,940), radioactive iodine ablation, and postoperative follow-up|
|Temporary||1%||5%–30%||0% Stable or silent cancer growth||Higher complication rate due to more extensive surgery (progression to clinical disease in 2%–9% of patients)|
|Permanent||Minimal risk||2%–5%||0% Stable or silent cancer growth||Higher complication rate due to more extensive surgery (progression to clinical disease in 2%–9% of patients)|
|Mortality||1/1000 patients||1/1000 patients||0–1/1000 patients||0–1/1000 patients|
aData obtained from Japanese studies on active surveillance for PTMC. Applies to 7% to 16% of patients.
bValues estimated from the Nationwide Inpatient Sample–Healthcare Cost and Utilization Project. The cost is adjusted for the inflation rate to reflect the 2014 dollar value.
cCurrently, there are no data to show the cost of follow-up surveillance only.
dComplications also contribute to cost estimates and range from $101 to $22,050 (depending on the type of complication).
Source: Kandil E et al., JAMA Otolaryngology–Head & Neck Surgery, January 2016
With all the beribboned survivors, it is hard to imagine, but it wasn’t that long ago that a cancer diagnosis was a death sentence. That’s not necessarily the case anymore, says medical ethicist Robert Arnold, MD, director of the Institute for Doctor–Patient Communication at the University of Pittsburgh. “The issue is that once you say, ‘You have cancer,’ people stop hearing the rest,” he says. “They’re nervous about not doing the right thing, or not doing as well, and they’re worried about the cancer spreading.” In other words, he doesn’t think a diagnosis of cancer is as fatalistic as it used to be.
It’s important to constantly interact with cancer patients to show that “we are not leaving them by the wayside,” points out John Gerecitano, MD.
Photo: Memorial Sloan-Kettering Cancer Center
But having cancer certainly means something. Nancy Hughes’s doctor at Memorial Sloan-Kettering sees that in his clinical practice daily. “This is an invasion in the body that does not belong there and they want to get rid of it,” says John Gerecitano, MD.
Gerecitano estimates that about half of his patients with indolent, or slow-growing, non-Hodgkin’s lymphoma are on active surveillance, but each case requires an individualized approach. “The two biggest tenets are a good education and constant conversation, and showing them we are actively following them and we are not leaving them by the wayside,” he says.
Mayo’s Leibovich says even just starting the conversation about active surveillance of kidney cancer with a patient takes commitment and extra time. “Most of these patients come in having had a primary care physician discover these tumors accidentally when they’ve had a scan for some other reason,” he says. “Most of them have been told, ‘You’ve got a kidney cancer and you have to get something done right away.’” He estimates his average conversation that just introduces the idea of active surveillance to a patient is at least a half hour and in some cases may last as long as an hour.
With small kidney tumors, as well as prostate cancer, the fear triggered by the very word cancer can get in the way of a meaningful conversation, says Leibovich. A growing number of oncologists think cancer is the wrong word and are advocating for calling very early stage, indolent cancers “indolent lesions of epithelial origin,” or IDLEs.
“There needs to be more robust analysis of costs for each situation where surveillance is feasible,” says Bradley C. Leibovich, MD, of the Mayo Clinic.
“They’re called cancers, but we know that not all cancers are destined to do a patient harm, no matter how long the patient is going to live,” Leibovich says. “Once we get that idea across to the patient, that this may or may not be harmful, and that in some circumstances you have the option of intervention now or intervention down the road if we think you need it, and that the outcome is just as good no matter which one you choose, no matter how long you live, then we can make progress.”
For patients with small renal masses diagnosed incidentally, providers typically recommend repeat imaging at three to six months initially, repeat imaging in six more months, and then annually, provided no changes are seen. “For patients with very small renal masses, I tell them right up front that the likelihood that the renal mass will affect how long they live or affect their quality of life is exceptionally low—but if they’re going to blow it off and not follow surveillance recommendations, then they could get themselves in trouble,” Leibovich says.
Physicians also have to change the way they think about cancer, says Arnold. His education outreach involves “trying to help physicians be more cognizant of the fact that just because you have cancer doesn’t mean you’re going to die of cancer. Some of it is just helping physicians be smarter about that.” For doctors, talking with people about their cancer involves attending to their emotions—something physicians are not necessarily trained to do, he notes.
Health plans have to walk a fine line in the conversation about active surveillance. If they push too hard, they’ll be seen as forcing patients to forgo life-saving treatments to benefit the bottom line, although the evidence on the cost effectiveness of active surveillance for cancers beyond the prostate is inconclusive at best. On the other hand, if plans are too lackadaisical they risk being accused of not informing cancer patients of all their options.
“In areas where there is controversy among experts, Independence Blue Cross believes the best approach for patients is to talk with well-trained, caring physicians who will engage them in shared decision-making,” says Liss. The health plan’s job is to provide information to members and access to a broad network of cancer specialists “whom we rely on to exercise their best professional judgment in recommending appropriate services in each individual case.”
Cigna relies on the National Comprehensive Cancer Network guidelines for determining what interventions are appropriate, says Bhuvana Sagar, MD, a clinical oncologist and Cigna medical director. “Our coverage policies are based on nationally recognized guidelines and evidence-based medicine guidelines, which are critical to avoid overtreatment or undertreatment in these specific scenarios,” she says. “When coverage is in question, we try to get as much clinical information as possible from the physician and look to clinical evidence to support the decision-making process.”
Insurers should not only help people deal with their cancer, but also counsel how it’s going to affect their lives, says Robert Arnold, MD, of the University of Pittsburgh.
Arnold says that health plans should help people deal with not just what to do about their cancer, but to think through how it’s going to affect their own lives. “We need to be a little less caught up in the issue, ‘Do I have a disease?’ and think a little bit more about, ‘What does it mean for the quality of my life?’ It may mean things for the quality of life, but it may not,” he says.
Health plans, along with physicians and other providers, can help to “slow people down” in the decision-making process, he says. They need to be careful about how they present information: “It’s not just a matter of flooding patients with information,” says Arnold, noting that psychologists have studied information and how people make decisions. Insurers, he continues, need to think about the quantity of information they share, its presentation, and people’s emotional reactions to it.
So far, health plans haven’t done a very good job of this, in Arnold’s view. “Often, insurance companies have done what they do when people are choosing their insurance plans: They give you so much information that it doesn’t help—it just overwhelms most normal people,” he says. “We need to get them to slow down, to see if we can get people to realize that they have time and we want to help them make the best decisions possible.”
The former chief of hematology/oncology at the University of Chicago, Richard Schilsky, MD, has seen cancer care come full circle. Thirty-five years ago, oncologists couldn’t do much beyond watching and waiting for people with advanced, metastatic colon cancer that wasn’t causing any discomfort or other symptoms.
“It was not uncommon in those years to just observe the patient for a period of time before deciding on any intervention,” Schilsky says. “I had many patients we would observe for three, six months, even as long as a year without any worsening of the metastatic colon cancer.”
Now the senior vice president and chief medical officer of the American Society of Clinical Oncology, Schilsky sees the following as the challenges that must be met before active surveillance is widely accepted as an approach to more types of cancers:
In the not-too-distant future, advances in identifying genetic panels that reliably predict the future course of a cancer could be the tipping point for active surveillance that brings it fully into the mainstream. Say doctors could talk with certainty to their patients about the genetic evidence that shows that their cancers are highly unlikely to progress and cause health problems. Who wouldn’t consider active surveillance in such a circumstance?
With very small thyroid cancers, the difficulty is separating out the tumors that will progress to more consequential disease, he says. “We all agree that there could be a gene panel that will predict metastasis and recurrence,” says Kandil at Tulane. The problem is identifying all genes that need to be included—and excluding the ones that don’t.
Precision medicine—tailoring treatment to a person’s genetic makeup, environment, and other factors—is ripe territory for active surveillance, says Schilsky. “In a sense, it’s begging for that kind of approach because each tumor is different,” he says. “You have to be able to understand the characteristics of each individual person’s tumor and to assess the risk that the tumor poses in the context of the patient’s general health and risk tolerances.”