Cancer survivors are a rapidly growing population in the United States. The American Cancer Society reported that there were 14.5 million survivors as of the beginning of 2014, with a 30% increase to 18.9 million expected within the next 10 years.1 It is probably no exaggeration to say that every primary care clinic in the country is serving cancer survivors.
In its seminal report From Cancer Patient to Cancer Survivor: Lost in Transition (2006), the Institute of Medicine (IOM) identified medical follow-up of cancer survivors as a missing link in cancer care and made recommendations to the medical establishment to fill that gap. The IOM’s recommendations were classified into 4 categories: prevention, surveillance for cancer recurrence or new cancers, intervention for consequences of cancer and its treatment, and the fourth—and probably best known—recommendation, coordination of care between oncology specialists and primary care providers. The proposed vehicle for oncology/primary care coordination was the survivorship care plan (SCP), defined as a comprehensive treatment summary prepared by the coordinating oncologist for the patient’s primary care provider (PCP). The SCP was to include detailed information about
- the patient’s diagnosis and treatment,
- actual and potential adverse effects of treatment,
- recommendations for follow-up screening tests,
- red flag symptoms of recurrence, and
- behavioral recommendations for healthy survivorship.2
Some significant positive aspects of the IOM report are that it
- identified survivorship as a distinct phase of cancer care and acknowledged that survivors have unique needs, both medical and psychological;
- identified current care gaps, based on data that many survivors are lost to care despite increased morbidity and inferior quality of life in that population; and
- for the first time, proposed a structure for the oncologist to PCP handoff.
Implementation of Survivorship Care Plans
Despite the need for SCPs, implementation of the IOM recommendations has been slow. So far, studies of recommendation effectiveness have revolved around SCP implementation. Several key organizations, including the American Society of Clinical Oncology, have adopted standardized care plan formats; however, a 2013 study indicated that systematic information sharing between oncologists and survivors’ PCPs is still more the exception than the rule.3
Among significant obstacles to implementation are the time and cost of preparing SCPs. Ideally, the SCP would be prepared in time for the oncologist to review it with the patient in a “transition visit” following the end of acute treatment, but there is evidence that it’s taking 3 month to 6 months to complete the plans, if they’re completed at all.4 That timing leaves both the PCP and patient in limbo and undermines the use of the care plan as a transition tool. SCP preparation has also been hampered by lack of compensation for practitioners, which is based, ironically, on the idea that there’s not enough proof yet of the little-studied plan’s effectiveness.5
Another obstacle to SCP implementation is PCPs’ ability to follow through on SCP recommendations. Many PCPs feel ill-prepared for the task due to inadequate training or understanding of survivorship issues.6 In a 2009 article in the Journal of Clinical Oncology, a primary care physician at the Harvard Medical Center, Boston, named areas in which PCPs need more guidance in caring for cancer survivors. These are
- surveillance modalities, intervals, and duration, as well as screening for other cancers;
- management of treatment-related morbidity;
- prevention and risk-modifying strategies, such as diet and exercise;
- psychosocial effects of cancer and its treatment; and
- coordination of care, with whom and when.7
With effective interprovider communication still rare and PCP confidence shaky, follow-up care of survivors remains with oncologists and continues to revolve around surveillance or testing for the presence of new or recurrent cancer. Survivors are called back to oncology centers every few months for a computerized tomography scan and/or tumor marker test (if there’s an active marker to analyze). The criterion for successful follow-up is “no current evidence of disease.” Between follow-up appointments, survivors receive little to no systematic guidance about physical and emotional recovery or prevention of future disease.
This is not surprising. Oncologists and their staffs are necessarily focused on acute care. Their personnel have neither the training nor the time to effectively handle survivors’ concerns, including recovery support and prevention. After forming close connections with their oncology teams during treatment, patients report being frightened and disappointed when the staff they relied on for so long isn’t able to effectively answer their questions, provide a comprehensive care plan, or refer them to a practitioner or team who can expertly do so.
The intervals between survivors’ surveillance appointments present an irreplaceable opportunity to meet 2 categories of need identified by the IOM report and reiterated in the Journal of Clinical Oncology article noted above: the consequences of cancer and its treatment and reducing risk of further disease. Integrative medical professionals are uniquely suited to guide survivors in these areas.
Intervention for Consequences of Cancer and Its Treatment
Pharmaceuticals, the stock-in-trade of most primary care practices, may suppress individual residual symptoms of cancer treatment in some patients (eg, neuropathic pain) or prevent certain delayed effects of treatment (eg, osteoporosis). But symptom-by-symptom treatment of cancer survivors fails to address a fundamental issue: the aggressive nature of standard cancer treatment often leaves patients depleted and symptomatic. Viewing survivor treatment possibilities through the lens of available pharmaceuticals falls far short of what survivors need: replenishment to a level of physical and emotional strength and stamina that supports a high quality of life.
Gaining and applying knowledge empowers survivors, helping them transition from passive participants in a tumor-focused process to active participants in a person-based process.
An example of where the mainstream system currently falls short is in treatment of cancer-related fatigue (CRF), which may persist for years after treatment in up to a third of survivors.8 A 2012 review found that cancer survivors in the mainstream system were not being routinely assessed for causes of their fatigue or being treated effectively.9 This is not an issue to be brushed aside. Apart from the obvious impact on quality of life, cancer-related fatigue is associated with depressed immune function and may therefore affect risk of cancer recurrence.10,11
Integrative medical professionals trained to treat the whole person bring several distinct advantages to the assessment and treatment of multifaceted issues such as CRF. Holistic assessment and treatment strategies take into account the separate and interrelated effects of multiple causes of symptoms. In the case of CRF, these could range from nutritional deficiencies to hypothalamic-pituitary-adrenal dysfunction to mitochondrial damage. A common factor among these and other potential underlying causes is that they are remedied by replenishment, something that pharmaceuticals simply don’t do. Integrative medical professionals whose “toolkit” features expertise in lifestyle as medicine and nutritional and herbal supplementation are equipped to treat patients in need of replenishment. The possibility then emerges for survivors to progress from being “not sick” (ie, no evidence of disease) albeit symptomatic to becoming well.
True wellness also includes emotional wellness, and the IOM report notably recognized this as a significant unmet need among survivors.2 The “whole person” approach enables the integrative practitioner to draw up a comprehensive treatment plan that looks beyond the presenting complaint to broadly address the needs of body and spirit. While the integrative practitioner may choose to refer the patient to a colleague with greater expertise in emotional healing, the initial comprehensive treatment plan forms a solid basis for communication and coordination of care, saving the patient redundant appointments and the burden of reconciling the instructions of multiple practitioners. Drawing up a comprehensive treatment plan and coordinating the team executing the plan is in itself a great gift to survivor patients.
A prominent question in nearly every survivor’s mind is “What do I need to do so this never happens again?” Most would rather not “watch and wait” if there are measures that would reduce the risk of a future round of disease.
While mainstream cancer treatment centers are to be acknowledged for their heroic efforts to remove immediate threat to life, even the most effective standard treatment may only return the patient to the brink of disease. Without preventive treatment that modifies potential contributing causes of the patient’s recent disease, it may be just a matter of time before he or she is tipped back over the disease threshold.
The IOM report identified prevention as an essential element of survivor care, but the meaning it assigned to prevention—checking for cancer recurrences and second cancers—overlaps the definition of surveillance.2 We who treat cancer survivors must clearly distinguish between surveillance—ie, detecting a course of disease already afoot—and true prevention: advance action that keeps a new course of disease from developing.
A handful of pharmaceuticals have demonstrated efficacy in reducing cancer recurrence via a single mechanism of action, notably selective estrogen-receptor modulators and aromatase inhibitors for estrogen-positive breast cancers. Unfortunately, these drugs’ preventive power may come at significant costs: harsh side effects that negatively impact patient quality of life and increased risk of other cancers.
When approached from a holistic view rather than through the lens of single-mechanism agents, prevention possibilities expand dramatically. A holistic approach views disease as the result of degradation of the “internal terrain” as a result of events and effects of one’s personal history (eg, medical, emotional, environmental). In this context, prevention of cancer must include measures that identify and normalize oncogenic features of the terrain (eg, inflammation, glucose/insulin dysregulation, immune derangement), restore the body’s homeostatic mechanisms to working order, and modify controllable factors that contribute to terrain derangement.
As the medical field’s experts in lifestyle medicine who are best-versed in natural modalities that replenish and repair, integrative medical professionals are well equipped to assess and treat terrain damage that has expressed itself as disease. We typically offer more office time, listen more closely, and more easily connect the dots between expressions of disease and the status of the underlying terrain. We educate patients about aspects of their histories, like the food they eat or way they respond to stress, that may have damaged their internal terrain and empower them with sustainable replacement strategies to prevent further damage.
Cancer survivors often readily align with the idea of helping nature get back in charge, so their bodies are reempowered to do what they can to stay well. This approach helps dispel the idea that their bodies have betrayed them. Patients learn to see their bodies as allies that will support them as best as possible as long as the body’s needs are met. In the process of bringing them to this understanding, we fill the need for consistent, trusting relationships that survivors seek at the end of acute cancer treatment.
There are additional benefits to this holistic preventive approach. Gaining and applying knowledge empowers survivors, helping them transition from passive participants in a tumor-focused process to active participants in a person-based process. They learn to ask good questions, hold themselves accountable for their actions, and step up to a role as a valued, contributing partner of the wellness team. This approach relieves their sense of helplessness: rather than looking over their shoulders for the next cancer, they learn to focus on what they can do to create a healthy future.
Guided by the integrative imperative to “treat the whole person,” integrative medical professionals are powerfully equipped to address cancer survivors’ needs of recovery support, quality of life enhancement, and prevention and thereby fill the care gaps identified by the IOM.