My take-home message for routine patient care is to suggest that monitoring should be personalized as much as is possible. We have to try to strike that balance between what we need to know as physicians and what is best for the individual patient.
—John F. Smyth, MD
How wonderful it is that we now have to concern ourselves with survivorship issues! The ever-increasing success of cancer therapy means that more and more patients can look to a life beyond cancer diagnosis and treatment. But living with cancer creates its own problems. While treatment often may be successful, cure is rare; patients need to be made aware that residual disease after primary treatment is always a possibility, and that one day a recurrence may (or will) occur. Of course, the specifics vary greatly according to disease type, response to treatment, and so forth, but there are common themes.
Emotional Cost of Surveillance
One of the key issues of contemporary oncology is to decide how best to monitor patients in remission. In a cost-conscious world, how do we strike the right balance between follow-up visits with associated investigations for asymptomatic patients, vs waiting for the signs and symptoms of recurrence? “Cost” is more than financial; there are important emotional factors to consider as well. Routine reviews and tests are a source of comfort and reassurance to some patients but a source of great anxiety to others, as fear of relapse is virtually universal.
Leaving aside the issue of financial cost, in an ideal world you would probably choose to design a specific follow-up program for each individual, based on prognosis, age, background, level of anxiety, need for reassurance, support network, etc. But when designing health-care protocols at the institutional level, we need to create disease-oriented programs that are applied more or less in the same way to every patient.
Assessing the financial costs of different monitoring programs is relatively easy, but evaluating the emotional cost of different intensities of surveillance is much harder. Here, a balance must be struck between the doctor’s needs and those of the patient. The doctor has a professional responsibility for monitoring a patient’s health, but in some countries there is also fear of criticism, or possibly even legal action for any suggestion of negligence. In this situation, there is a risk (or tendency) to over-investigate to the detriment of the patient, since this inevitably creates additional anxiety.
In my experience, patients vary greatly in their attitude toward surveillance, especially those who are better educated and well informed. Some patients crave information—frequent scans, blood tests, and so forth—but others want to minimize intrusion, lest bad news adversely affect their emotional equilibrium. As with so much in oncology, the best approach is through explanation—talking and, above all, listening.
As the oncologist, you understand the therapeutic necessity of identifying asymptomatic relapse if second- or third-line treatments are available and genuinely useful. In that setting, I recommend that explanations about the purpose of monitoring during remission be explained at the outset of planning treatment. This subsequently justifies the emotional “spend” involved in investigations. However, if the therapeutic options at relapse are marginal, you should do everything possible to allow patients to decide how much monitoring is optimal for them, during periods of asymptomatic remission.
Striking a Balance
As we develop more specific blood-borne biomarkers of cancer activity, it may eventually be possible to monitor patients during remission in a continuous fashion. Patients may find that both acceptable and much less threatening, since you reduce the sudden anxiety associated with intermittent scans or invasive tests. But the tools we have today are of limited value.
For example, research has shown that elevation of CA125 can anticipate clinical signs and symptoms of ovarian cancer relapse by 3 to 4 months, but introducing further treatment at that time does not affect survival. Hence, the monitoring only gives the patient several months of added anxiety together with the side effects of returning to anticancer treatment. Of course, when research protocols are involved, monitoring and documentation of relapse is essential, and patients understand that.
My take-home message for routine patient care is to suggest that monitoring should be personalized as much as is possible. We have to try to strike that balance between what we need to know as physicians and what is best for the individual patient. The patient needs to find his or her own equilibrium between reassurance and anxiety. That’s not easy—but this is oncology, after all.■
Disclosure: Dr. Smyth reported no potential conflicts of interest.
Dr. Smyth is Emeritus Professor of Medical Oncology at the University of Edinburgh, Scotland, United Kingdom.