Who Are The Individuals With Advanced Disease

The National Cancer Institute defines a cancer survivor as any individual who has received a cancer diagnosis "who is still living... no matter when that diagnosis was made or whether it was successfully treated."1 Thus, people with AC that has metastasized to tissues distant from the original tumor site are classified as "survivors" from the moment of diagnosis until death, regardless of prognosis or disease activity.

To many laypeople, practitioners, and patients themselves, this group may not fit their prototype of a posttreatment, disease-free survivor. Indeed, some people with AC choose not to call themselves survivors when treatment has not eradicated the disease and they face a foreshortened future, believing that the term portrays a more optimistic state of affairs than is warranted.1 Nevertheless, individuals with AC have been underrepresented in cancer survivorship research and activism, and we believe that the unique issues they face deserve a place in this handbook.

Although some issues and concerns may be common across individuals with AC, it is an extremely heterogeneous population. Nearly all cancers have the potential to metastasize through the bloodstream, the lymphatic system, or by local extension of the primary tumor to the surrounding tissues. Common sites of metastases include the brain, lungs, liver, abdomen, skin, and bones, and the location of metastases often depends on where the cancer originated.2 Cancers that have metastasized are usually incurable. Nevertheless, treatments can frequently shrink or control the tumor, relieve physical symptoms, and prolong life. Treatment of AC may include radiation to target metastatic lesions in the brain or the bones, chemotherapy, or, depending on the location and size of the lesions, surgical resection of metastases to the brain, lungs, or liver. As cancer treatments can be accompanied by adverse side effects such as fatigue and nausea, the potential advantages of various treatment options for AC must be weighed against potential risks and effects on quality of life (QOL).

For some cancers where early detection is difficult or tumors particularly aggressive, such as ovarian or pancreatic cancer, a patient may not be diagnosed with cancer until it has metastasized and is no longer curable. For others, AC arises as a recurrence of earlier malignancy after a period of remission. An individual's experience of being diagnosed with advanced disease may be quite different depending on whether it is a first cancer diagnosis or a recurrence.3 For example, receiving a previous diagnosis of early-stage disease may grant individuals additional time to consider the possibility of a foreshortened future should their cancer metastasize, whereas an initial diagnosis of Stage IV cancer can overwhelm patients with immediate end-of-life concerns. Prognosis of AC is also quite variable, depending on the disease site, the treatments available, the extent of metastasis, and many unknowns. Although most people diagnosed with AC survive less than one year,2 others live for decades with metastatic disease. The cancers most likely to be diagnosed at an advanced stage include lung cancer, gastrointestinal cancers (i.e., colon and rectum), non-Hodgkin lymphoma, and ovarian cancer.4 Given the high prevalence of breast and prostate cancers, many individuals with metastatic disease also fall into these diagnostic categories, although they are more likely to have a previous diagnosis of early-stage disease.

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