Although many cancer survivors have an excellent chance of never experiencing a recurrence, a new survey of oncologists has found that most are hesitant to use the word “cure,” and two-thirds would never tell a patient that he or she is cured.
Perhaps even more interesting, only one-third of patients asked about it, according to the survey, conducted at Dana-Farber Cancer Institute by researchers led by Kenneth Miller, MD, a cancer survivorship expert with the Division of Hematology and Medical Oncology at Alvin and Lois Lapidus Cancer Institute of Sinai Hospital of Baltimore.
Among 117 oncologists who completed a 19-question survey, 81 percent said they are hesitant to use the word cure with regard to a patient and 63 percent said they would never tell patients they are cured, even if the cancer has been in remission for many years.
In the study, published in the July issue of Journal of Oncology Practice (2013;9:e136-e140), the oncologists were asked their views on how commonly they felt their patients are cured, how often they use the word cure, and other details about its use, in addition to presenting three case scenarios to elicit the participants' views on the subject.
Among the respondents, only seven percent expressed at least 75 percent confidence that patients were cured or one day will be; and only 34 percent of patients asked if they have been cured, the oncologists estimated.
Some patients may be afraid that they will hear that they are not cured or may be superstitious that being told they are cured will somehow “jinx” them, Miller speculated in an interview. After all, the experience of being diagnosed and treated for cancer is traumatic, and can have lifelong emotional impact.
The survey respondents said that they believed that 20-year survivors of several cancers are, for all intents and purposes, “cured.” This was especially true for long-term survivors of testicular cancer, where 84 percent of oncologists said they felt the patient was cured, and similarly, 76 percent said that for patients with large-cell lymphoma. For women who had survived for 20 years after treatment for estrogen receptor-positive breast cancer, 34 percent said they believed they were cured.
Miller added that because some cancers can return decades after remission, oncologists may hesitate to use the word “cure,” reflecting that 100 percent certainty is not possible.
In addition, annual oncology follow-up was recommended for these patients by 45, 43, and 56 percent of respondents, respectively. Moreover, 23 percent of the oncologists said that they believed that their patients should never be discharged from the cancer center.
“There has been almost nothing published on this subject,” Miller said. “We talk a lot about ‘curative intent’ but not about using the word ‘cure’ with patients. Personally, I believe that it is OK to say, 'to the best of my knowledge I think you are cured' to such patients.”
Cancer survivors who recognize that they are “cured” or most likely are cured will perhaps experience less fear of recurrent and also focus more on their general health, cancer screening, and improving overall health behaviors, he said.
“When the risk of recurrence is very low, then surveillance for relapse alone adds little to routine follow-up visits with primary care providers. If we ask patients to return yearly, we can add value by also screening for late and long-term effects of treatment and for secondary cancers.
“Cancer is a teachable moment,” and we can also promote secondary prevention, improved diet, and exercise. An interesting survey, Miller said, would be to assess the value of follow-up care five, 10, 15, and 20 years later.
Some patients also stop keeping follow-up appointments much earlier after they have been cancer-free for several years, he said, noting an informal survey conducted at a community cancer center showing that the number of patients returning for long-term follow-up care was low.
“At five years, the number of patients was about 50 percent, but for 20-year survivors it was very low—between five and 10 percent,” he said.
The results, he said, point to the need for more research about the role and purpose of follow-up visits throughout the cancer care continuum, but also raise questions about the potential positive and negative implications of using the word cure with patients.
“There may be substantial implications of not using the word cure,” Miller continued. “For cancer survivors, the uncertainty about being cured could be an ongoing source of worry.”
In contrast, use of the word could facilitate positive psychosocial adaptations and increase confidence, but also result in more cancer survivors discontinuing or reducing their oncology follow-up.
For oncologists, determining that a patient is cured might be used as a reason to justify discharging the patient from oncology follow-up, as physicians shift time and attention to newly diagnosed patients. If the patient perceives cancer as a curable disease, wider compliance with screening may facilitate and improve early detection.
What role these factors play or will pay in managing cancer survivors is unknown, yet each is important and deserving of additional research, he said.
Discussions with Patients
Asked for his opinion for this article, David A. Ettinger, MD, Professor of Oncology, Radiation Oncology and Molecular Radiation Sciences at Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, said that oncologists do need to reflect on the use of the word cure: “This is an excellent study. In the literature there have been qualitative studies of this, but to my knowledge this is the first to offer any quantitative data. It opens the issue for discussion with cancer patients, and allows for development of that.”
Patients must accept the possibility of remission no matter how long they have been disease-free, he said. “But accepting this is a challenge that persists long after successful treatment. And remember, 'cure' may mean different things.”
For patients, the experience of an illness that cannot be “cured” can make them apprehensive for a lifetime, he noted, and the unwillingness of physicians to use the word may stem in part from awareness that successful treatment often carries a tradeoff in terms of their ongoing responsibility. Even patients who are “cured” of Hodgkin lymphoma, for example, can have recurrence of the disease years later, or experience other health issues in its aftermath, he explained.
“All of us are rightfully measured in using the word ‘cure.’ In fact, I do not think that I have ever used it. I say ‘you are likely cured’ after five years, but I have had patients with multiple myeloma where the disease recurred after 15 years.”