Stanford Medicine Newsletter Updates For the Local Community

Create a long-term plan for cancer survivors

Summer 2008

Play eases the anxiety of Bernard Dannenberg's young patient.


Professor of Medicine (Oncology and Blood and Marrow Transplantation)

A few years ago, one of my patients published a book encouraging people diagnosed with cancer to be aggressive information-seekers and to play an active role in their treatment decisions. In “The Patient from Hell,” MacArthur scholar and climate scientist Stephen Schneider used his cancer treatment experience “to argue for needed reforms in a medical system that … is not optimally serving patients.”

While only a small percentage of people surviving cancer will publish books on the topic, most of them—along with many of my colleagues in oncology—agree with Schneider’s assertion that the way we care for people with cancer can be improved.

Growing concern

Nearly 12 million Americans are cancer survivors, and the number of people living with a cancer diagnosis as part of their health history will continue climbing, as the population of citizens age 65 and older grows. More than 1.5 million people will be diagnosed each year, roughly 10 percent of them Californians.

This rapidly growing population commands attention for the distinctive medical and psychosocial needs associated with cancer survivorship. Cancer changes a person’s health care needs forever, even after primary treatment has ended.

In fact, people who have been treated for cancer frequently report that the most unsettling part of their experience was when treatment ended and they were left with the uncertainty of “What next?” Their fears about recurrence, how often to be tested, insurability, employability, sexuality and many other short- and long-term issues need to be addressed.

After treatment ends

Those who have not been touched by cancer have difficulty fathoming the extent to which this diagnosis changes a person’s life. Many have heard of the fatigue and other adverse effects caused by cancer therapy, but few are aware of the long-term and late effects of treatment.

Late effects most often occur years after treatment and can include a host of conditions resulting from damage to the heart, lungs, bones, joints, bone marrow, nervous system and more. Some survivors are at higher risk for serious infection, infertility, thyroid dysfunction, hearing loss, premature osteoporosis, anxiety, depression and second cancers.

In a report commissioned by the independent and respected Institute of Medicine, a panel of experts in cancer care called members of this population “lost in transition,” without a coordinated follow-up plan to address their unique post-treatment needs and with few guidelines to assist them through the next stage of their lives.

Meeting survivors’ needs

A proposal in Congress would address this problem by creating a system of coordinated cancer care before, during and after primary treatment. The Comprehensive Cancer Care Improvement Act (H.R. 1078), led by Rep. Lois Capps, D-Santa Barbara, would provide Medicare reimbursement for oncologists to develop written treatment summaries and survivorship care plans at the completion of a patient’s cancer treatment.

The proposal mirrors one of the Institute of Medicine’s main recommendations: “Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained. This "Survivorship Care Plan" should be written and reimbursed by third-party payors of health care.”

The next step

As an oncologist and a cancer survivor, I appreciate the fog of a new cancer diagnosis as well as the need to coordinate care for survivors at risk for a wide range of late complications of treatment.

In addition to the Institute of Medicine, many other organizations have also concluded that the needs of cancer survivors are not being adequately met. After 20 years of anecdote, research and reports, this knowledge has been substantiated by evidence. The next step should be for Congress to consider H.R. 1078 and hear from the millions of cancer survivors and their loved ones whose lives would be drastically improved—and in some cases lengthened—by the enactment of this measure.

Sandra Horning, MD, is a professor of medicine (oncology and blood and marrow transplantation) and cancer specialist at Stanford University Medical Center. This article was first published in February 2008 in the San Jose Mercury News.

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