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News and Views |
Women who were exposed to moderate-dose or high-dose chest radiation (greater than or equal to 20 Gy) during childhood cancer treatment have an elevated breast cancer risk. The magnitude of that risk is at least as great as that associated with the BRCA mutations, and their cumulative breast cancer incidence may approach 20% by age 45 years. However, a study published in JAMA (2009;301:404-414) suggested that greater than 60% of women aged 25 to 39 years who had childhood chest radiation had not had a screening mammogram in the past 2 years, despite recommendations from the Children's Oncology Group (COG) that they begin breast cancer screening at age 25 years or 8 years after radiation, whichever occurs last. Where are the cracks in the system that facilitate a large divergence from established guidelines—and potentially cost women their lives? How do we fix them?
"I struggle with the term ‘adherence,’" says Kevin C. Oeffinger, MD, principal author of the new JAMA study. Dr. Oeffinger, who is director of Living Beyond Cancer, a program for adult survivors of pediatric cancer at Memorial Sloan-Kettering Cancer Center in New York City, says that the word "adherence" suggests that women with a history of childhood chest radiation are rejecting a recommendation of which they are aware. In fact, he says that new findings show that many women "are not aware of the risks, and neither are their physicians."
For women with a history of childhood chest radiation, the period of increased breast cancer risk starts within several years after radiation exposure. Their median age at breast cancer diagnosis is 32 to 35 years. COG guidelines specify that screening be conducted by mammography and adjunct magnetic resonance imaging (MRI), as do recommendations of the American Cancer Society.
Dr. Oeffinger and his colleagues administered a questionnaire between June, 2005, and August, 2006, to 625 women, aged 25 to 50 years, who represented a random sample of pediatric cancer survivors in the Childhood Cancer Survivor Study (CCSS), treated with at least 20 Gy of chest radiation therapy. Two comparison groups were also involved as follows: 712 female members of the CCSS sibling cohort and 639 female pediatric cancer survivors who were not treated with chest radiation. The main outcome measure was a screening mammogram within the past 2 years.
Overall, 55% of women with a history of childhood chest radiation reported having a mammogram in the past 2 years. But among women aged 25 to 39 years, only 36.5% (95% confidence interval [CI], 31.0 to 42.0) reported having mammographic screening in the past 2 years. In women aged 40 to 50 years, 76.5% (95% CI, 71.3-81.7) had been screened with mammography during the previous 2 years. The overall percentages for survivors who did not have chest radiation and for CCSS siblings were 40.5% and 37%, respectively. Among women exposed to chest radiation during childhood and who were younger than age 40 years, 47.3% (95% CI, 41.6-53.0) had never had a screening mammogram. Furthermore, only 52.6% (95% CI, 46.4-58.8) of the same group who were aged 40 to 50 years were being regularly screened, defined as 2 or more mammograms within 4 years.
When asked about barriers to getting mammograms, approximately one-third of the younger women who had not had a mammogram in the previous 2 years said that they did not get one because the "doctor didn't order it." A similar percentage indicated that they were too young to get breast cancer.
One bright spot emerged from these sobering results. Women whose physician recommended a mammogram were much more likely (multivariate prevalence ratio, 3.0; 95% CI, 2.0-4.0) than others to get the test. Among women aged 25 to 39 years who did receive physician advice, 76% were screened, compared with 17.6% who did not receive a physician recommendation. Among older women (aged 40-50 years), 87.3% of those whose physician urged screening mammography underwent screening, compared with 58.3% who got no nudge from a physician.
"These findings are consistent with what we know about screening tests in general," says Patricia A. Ganz, MD, director of cancer prevention and control research at the Jonsson Comprehensive Cancer Center at the University of California Los Angeles. "Physician recommendation [for screening] is one of the most powerful vehicles for getting the test done," she says. Dr. Oeffinger notes that at Memorial Sloan-Kettering, where his group follows and counsels a large number of pediatric cancer survivors with a history of chest radiation, breast cancer screening rates are in excess of 90%, underscoring how successful screening can be when performed in a coordinated fashion.
For adult survivors of childhood cancer, transitioning to adult health care can be problematic. "The parents of these patients tend to be quietly involved in their care, but they may not focus on the specifics of long-term follow-up," says Dr. Oeffinger. He explains that few pediatric cancer centers provide care beyond the age of 25 years, so the care a patient receives as an adult depends on how he or she is educated and how that is translated into adult care. "The reality of the US health care system is that many are lost to follow-up or during the transition to primary care," says Dr. Oeffinger. A patient may be cared for initially by one primary care physician, "but then the insurance changes, there's a new doctor, and the loop is broken," he adds. Ideally, he says, patients should smoothly transition to long-term, consistent follow-up by a primary care physician or, for high-risk patients, to a shared-care model with oncologists and primary care specialists.
A document known as a cancer treatment summary is crucial to closing information gaps surrounding childhood cancer treatment, says Dr. Oeffinger. In this study, 43% of women aged 25 to 39 years had this document. "The cancer treatment summary is the cornerstone of long-term cancer care," says Dr. Oeffinger. "It's a short document that lists the type of cancer and the key points about treatment, including the field and dose of radiation, the chemotherapeutic agents and their cumulative doses, major surgeries, potential late effects of treatment, and screening recommendations," he adds. A comprehensive document on follow-up care in pediatric cancer is available for download at the website of the Children's Oncology Group (http://www.survivorshipguidelines.org/).
Very few women in the current study had breast MRI as part of their screening, says Dr. Oeffinger. MRI was added to the screening guidelines relatively recently, and the test is far more expensive than a mammogram. "But we think MRI is very important," says Dr. Oeffinger, who adds that they hope to see increased use of this test in the screening process.
The stakes for adult survivors of pediatric cancer are high. Dr. Oeffinger and his colleagues estimate that 20,000 to 25,000 American women aged 25 years and older were treated with chest radiation for a malignancy that they had during childhood. Overall, it is estimated that up to 20% of all adult female cancer survivors around the world have had chest radiation.
"We need empowered patients," says Dr. Ganz. These patients have their cancer treatment summary, communicate clearly about their history with all of the physicians they currently see, and work together with their physicians to ensure that they get the screening and other follow-up care they need, she says 
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