PROFILES IN COURAGE — Four People Discuss the Profound Impact That Cancer Had on Their Lives and the Lives of Loved Ones

Meet Mary Diagnosis: Breast Cancer

Meet Mary
Diagnosis: Breast Cancer

Meet Ali: Diagnosis: Head & Neck Cancer

Meet Ali:
Diagnosis: Head & Neck Cancer

Meet Diane Diagnosis: Leukemia and husband died of melanoma

Meet Diane
Diagnosis: Leukemia and husband died of melanoma

Meet Darrell Caregiver for wife over 20 year struggle w/lymphoma and leukemia

Meet Darrell
Caregiver for wife over 20 year struggle w/lymphoma and leukemia




We’ve Made Great Strides in Treating Cancer, But Not Its Survivors


From Death Sentence to Chronic Disease:

Few words are more emotionally-laden than “cancer.” It does not merely connote disease, but rather suffering and death. Fortunately, not only the perception of cancer but the reality of the disease are changing rapidly thanks to early detection and advancements in treatment that render many cancers, at worst, a chronic illness, and at best curable. Proof can be readily seen in statistics from the American Cancer Society: “The 5-year relative survival rate for all cancers diagnosed between 2003 and 2009 is 68%, up from 49% in 1975-1977.”

Of course, not all cancers have yielded to the advancements of medicine. Pancreatic cancer, metastatic melanoma, certain types of brain tumors, and other difficult diagnoses remain devastatingly difficult to treat. For some of these diseases, the differentiating variable is the stage at which they are diagnosed. Whereas there are excellent screening modalities for common cancers, such as breast and colon, other cancers, including ovarian, are often detected after they have metastasized to vital organs.

Nonetheless, the scales are tipping in favor of survivorship: “While cancer incidence is projected to almost double over the next two decades to 21.4 million new cases annually, the number of people living with a history of cancer (i.e., ‘survivors’) is expected to triple to 75 million worldwide by 2030.”

The Challenges of Survivorship:

Cancer survivors face a plethora of challenges – challenges that were unimaginable when they were originally diagnosed, and the focus was purely on ridding their bodies of the invading disease. Most patients have endured regimens in which their disease was cut-out, burned-out (with radiation), or “poisoned” (with chemotherapy). Depending upon the extent of their treatment, there may be lingering or permanent side-effects– ranging from peripheral neuropathy to heart damage. Some patients are cognitively impaired from whole-brain radiation, and many others bear deep, but invisible emotionally scars from the journey.

McCabe et al. described the medical challenge facing cancer patients as follows: “Cancer survivors are at increased risk for long-term morbidity and premature mortality, related directly to the cancer itself, to preexisting comorbidities, and to exposure to therapy.” As a result, cancer survivors need ongoing medical supervision by physicians who understand: 1) the specific treatment regimens that a patient received; 2) the outcome of these regimens; 3) the sequela of post-treatment side-effects that the patient is or may experience; 4) the patient’s prognosis; 5) the recommended screening or monitoring activities to ensure that the cancer remains in check.

Who is My Doctor?

But exactly who provides such care in today’ health system remains ambiguous, causing patients to fall through the proverbial “cracks” and not receive the care they need.  The Institute of Medicine stated that, “For patients, it can be a time of confusion both about what follow-up care involves and about which physician is responsible for follow-up care.” The IOM also proffered a solution:  “Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained.” The report terms this as the “Survivorship Care Plan.”

Sounds simple and logical – the patient receives a roadmap providing “a summary of treatment and a specific detailed plan for surveillance follow-up and symptom management.” However, there appear to be four impediments preventing this vitally important step from happening: 1) oncologists are not compensated for creating such plans; 2) the short supply of oncologists limits their ability to take time away from the active treatment of patients for the construction of such plans; 3) most cancer patients receive multi-modality treatment that occurs across disparate treatment sites – necessitating consensus on the part of the multiple specialists regarding the patients’ care management plans; 4) oncologists are reluctant to facilitate transition of their patients to primary care physicians because they are less than convinced that PCPs have the clinical knowledge to properly manage cancer patients.

PCPs in Need of Respect:

In a study published in the Journal of Family Medicine, researchers found, “that a majority of PCPs perceive themselves as having an active role in the cancer-related follow-up care of survivors, most often in a co-management capacity with an oncologist. In contrast, most oncologists perceive that they directly provide cancer-related follow-up care themselves without much involvement from PCPs or other providers, a finding that parallels recent work documenting medical oncologists’ limited engagement in co-managing breast cancer care.”

A Call to Action:

Professional squabbles aside, the reality is that in fifteen years, there may be an additional 50 million cancer survivors. Just as medicine has made great strides in the early detection and treatment of cancer, now it must make comparable strides in addressing the profound needs of survivors. These hurdles to proper, ongoing care of cancer survivors must be overcome. Physicians need to be compensated for the time required to assemble detailed care plans, and primary care physicians must be appropriately educated to care for cancer survivors.