Guidelines for Survivorship Care

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Breast Cancer Survivors

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Ideally, the survivorship care plan would be organized around a set of widely agreed-upon clinical practice guidelines. Guidelines are best when they are based on evidence and derived in a formal process of either evidence evaluation and/or consensus. Unfortunately, there are few guidelines available for the management of cancer survivors. This situation reflects a lack of high-quality evidence in most cases, particularly for survivors of less-common cancers. In addition, experts widely disagree on recommendations.5 Most guidelines that do exist focus only on issues of surveillance.4,6,7 Consequently, the third recommendation of the IOM report is for the refinement of existing clinical practice guidelines to include survivorship care, and calls for the development of new evidence-based guidelines through public- and private-sector efforts.

Guidelines can still be useful even when based more on consensus than evidence, however. Clinical practice guidelines can decrease variation in care, particularly overuse of investigations8 that can lead to inefficiencies in health care delivery. For example, breast cancer guidelines recommend against imaging studies and tumor markers to look for metastases,6,7 and colorectal surveillance guidelines caution against the overuse of nonspecific blood work.4 In addition to economic costs, overused surveillance tests and visits often lead to false positive results and further investigations, with inherent physical and psychological risk.9,10 Indeed, randomized trials have not been able to consistently find positive psychological effects associated with surveillance.10,11 While being told that there is no sign of cancer recurrence can understandably decrease anxiety,12 the stress leading up to it, inconvenience and often discomfort of testing, and not infrequent detection of incidental abnormalities are instances in which surveillance causes harm.13,14 False positive results cause mental anguish and usually lead to further tests, possibly invasive ones like biopsy, that add expense and can lead to other complications.

While they may limit unnecessary care, guidelines can also facilitate the delivery of necessary care, as payers increasingly look to guidelines to make reimbursement decisions. If clinicians can agree that a certain procedure is beneficial and codify it in a guideline, it is difficult for an insurer to deny coverage for it. The most comprehensive guidelines for monitoring long-term and late effects of cancer therapy have been developed by the Children's Oncology Group ( They have developed guidelines for the surveillance of long-term and late effects of pediatric cancer patients that are based on evidence where it exists, and consensus where it does not. Many of the recommendations they make are applicable to adult cancer survivors as well.

4.1.1. Surveillance for Cancer Recurrence

Surveillance for recurrence of cancer is usually the first thing that comes to mind when survivor care is discussed. However, assessing the quality of surveillance care is not easy. Surveillance is something that seems like an obvious good thing. Patients like the notion because after completing a regimented treatment program, many are reassured by the ongoing tasks of surveillance and resultant contact with their providers.11 Oncologists also like the opportunity to provide reassurance.15

The main reason for surveillance is to detect local or distant disease at a time when survival can be prolonged by interventions to either cure the disease or at least treat it more effectively than when it is discovered later. Surveillance strategies generally consist of some combination of office visits with history and physical examination, blood work including tumor markers, imaging studies, and examination of the site of the original cancer. Surveillance of the primary tumor site can in some cases detect salvageable local recurrences, for example, in anal, breast, and head and neck malignancies. Other times, like in colon cancer, the rationale is more to detect new primaries in an organ presumed to have a predisposition. For disease that has spread beyond the primary site, there are some cancers, like colon cancer, renal cell carcinoma, and some sarcomas in which a small proportion of patients who recur distantly with oligometastatic disease can undergo surgery for possible cure.16

In many situations, however, there is not even a plausible rationale to intensely monitor asymptomatic patients in order to find incurable distant recurrence. Conventional wisdom is that if cancer is caught early it can be cured, but unfortunately the same is usually not true of early detection of metastatic cancer. Second-look surgeries to detect recurrence of ovarian and pancreatic cancers have not been associated with improved outcomes because such recurrences are generally not curable.17 Moreover, early institution of palliative chemotherapy in asymptomatic patients does not appear to provide benefit in most situations.11,18 Detecting and preventing potentially catastrophic complications of recurrence like spinal cord compression and pathological fracture has been put forth as a rationale for surveillance in situations in which recurrences will always be incurable, but randomized trials have not been able to detect a benefit from this.19

The use of imaging studies is often the most controversial aspect of surveillance because such scans are relatively expensive and are usually only able to find distant, incurable recurrences. Even in examples in which there is a strong rationale for them because of effective salvage therapies that are clearly more effective when the tumor burden is low, the majority of relapses present with signs, symptoms, or abnormalities on blood work (e.g., elevated LDH in lymphoma) without needing

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