Recent survivorship milestones:

• The five-year survival rate for children with cancer improved from 65 percent in the early 1980s to 74 percent in the early 1990s.

• The five-year survival rate for all cancers improved from 51 percent in the early 1980s to almost 60 percent in the early 1990s.

• 2 million women are breast cancer survivors.

• 1 million men are prostate cancer survivors.

However, surviving cancer can leave a host of problems in its wake. Physical, emotional, and financial hardships often persist for years after initial diagnosis and treatment. Many survivors suffer decreased quality of life following successful treatment, leading one cancer activist and survivor to say, "Surviving is not just about a cure, but about living the rest of our lives."

Long-term problems, many unique to cancer survivors, include:

• Physical effects — Physical problems can stem from the cancer itself or from treatments patients undergo. For instance, surgery to remove a tumor may also impair nearby organs. Likewise, radiation therapy can damage surrounding tissue and cause hormonal changes. Chemotherapy can be toxic to the heart, liver, lungs, nervous system, and other organs. Persistent fatigue and pain are also common among cancer survivors. In addition, childhood cancer survivors often suffer impaired growth and development.

• Sexual effects — Sexual problems are a common consequence of cancer treatment, cited by as many as 50 percent of women surviving breast and gynecologic cancers and as many as 70 percent of men surviving prostate cancer. Loss of desire, pain during sex, erectile dysfunction, premature menopause, and infertility have all been reported by cancer survivors.

• Psychosocial effects — Coping with cancer can strain relationships and trigger maladies such as depression, post-traumatic stress disorder, and profound fear of recurrence. In addition, a diagnosis of cancer can cause social stigmatization. These problems can interfere with daily living as much or more than physical side effects.

• Economic effects — Acute and long-term medical expenses, and lost wages and lost jobs can all leave cancer survivors deep in debt, increasing worry, and decreasing quality of life.

• Second cancers — Of the 1.4 million new cancers diagnosed each year, almost 100,000 are second cancers. Patients surviving one cancer have almost twice the risk of developing a second cancer as the general population has of developing a first. Children under age 15 who have survived cancer have eight times the risk. The reasons for this are unclear, although genetic susceptibility and the effects of chemotherapy and radiation treatments are likely important factors.

Unfortunately, many of these long-term effects — and how they impact survivors — are poorly understood. In 1996, the National Cancer Institute (NCI) formally recognized the need to better understand the issues cancer survivors face by establishing the Office of Cancer Survivorship (OCS). OCS awarded its first research grants in 1997, totaling $4 million over two years. In 1998, OCS awarded another $15 million over five years. Altogether, NCI supports $20 million per year in survivorship research, much of it begun before the creation of OCS.

The primary goal of OCS, to improve the quality of life of cancer survivors, is served by a range of initiatives. Expanding research into cancer survivorship issues is the first step. OCS has placed a priority on funding research on long-term survivors — those alive five or more years after diagnosis. OCS is dedicated to developing the infrastructure — such as databases and researcher networks — that supports the follow-up needed to study long-term survivors. OCS also supports programs to educate patients, physicians, and the public about cancer survivorship. Finally, much of the research supported by OCS is aimed at interventions that can lessen the burden of cancer survivors.

As more becomes known about the long-term effects of specific treatments, clinicians — and their patients — will better understand the consequences of such treatments. They will also be better equipped to face those consequences.

Examples of OCS-funded research:

• Quality of life in prostate cancer survivors.

• Studying complications in breast cancer survivors.

• Cardiac risk factors in pediatric cancer survivors.

• Enhancing long-term survival after bone marrow transplant.

• Second cancers following childhood cancer: Possible interaction between genetic predisposition and cancer.

For more information about cancer visit NCI's Web site for patients, public, and the mass media at http://www.nci.nih.gov.