Battling Breast Cancer: Tara Ernske’s Story
Early-Stage Breast Cancer: Is Your Doctor Ordering Tests You Don’t Need?
New research reveals that many doctors are inappropriately using advanced imaging and tumor marker tests for patients with early-stage breast cancer.
By Laura Newman
Medically Reviewed by Thomas Marron, MD, PhD
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Imaging and tumor marker tests are transforming cancer care, helping doctors find cancers sooner and targeting treatment for later-stage disease. But new research, presented at the annual meeting of the American Society of Clinical Oncology in June 2019, revealed that many patients with early-stage breast cancer — which has not spread outside the breast or nearby lymph nodes — are receiving these tests unnecessarily.
The news is worrisome because guidelines from top physician groups (ASCO and the American Board of Internal Medicine Foundation’s Choosing Wisely joint initiative) clearly state that they should not be used in patients with early-stage cancer who show no symptoms after their initial treatment, because these tests are designed to pick up the distant spread of cancer cells, which is highly unlikely in early-stage breast cancer.
Moreover, when imaging tests are used inappropriately in these patients, they can lead to false-positives — suspicious results that are ultimately insignificant but can lead to a cascade of unnecessary procedures, unneeded radiation exposure, misdiagnosis, overtreatment, and emotional distress.
Ordered Tests Differ From Practice Guidelines
In a review of patient records for 2,193 patients with early-stage breast cancer in the National Cancer Institute SEER cancer registry of Western Washington, Gary Lyman, MD, a breast-cancer oncologist and the codirector of the Hutchinson Institute for Cancer Outcomes Research in Seattle, reported that 37 percent received tumor marker tests (CEA, CA 15-3, CA 27.29) and 17 percent received advanced imaging (PET, CT, or bone scans). On average, about 2.8 inappropriate tumor marker tests and 1.5 unnecessary imaging studies were performed per patient.
Tests Have Many Downsides
The costs of care rose substantially for patients who had these tests. Compared with an average cost of ,403 for all patients in the study, average costs rose to ,380 for patients who had tumor biomarker studies and ,998 for those who had advanced imaging. Cost information was not available for patients who had both tests. Patients inevitably end up footing the bill for at least some of the difference. “Depending on a patient’s coverage, the out-of-pocket costs can be substantial,” says Dr. Lyman.
Just as important, the tests don’t improve the outcome for these patients, says Lyman. “There is no improvement in survival and there is a fairly high rate of harm,” he adds, referring to the issue of false positives.
Another potential problem is that patients pressing for these tests might get “false reassurance” if the tests are negative, and assume that future symptoms are from unrelated issues, which thus remain unexplored, explains Lyman.
Diane Mapes, a breast cancer survivor in Seattle, remembers her reaction to hearing that leading medical groups do not recommend advanced imaging and tumor marker studies. It seemed counterintuitive, because she figured the more tests you do, the more likely you are to stop cancer.
“When I first heard this, I thought it was crazy,” Mapes says. “But I learned that with early-stage cancer these tests are not that reliable. In addition, when you start scanning, you find weird things that often are totally insignificant. More and more tests get done, making you more anxious.” The more Mapes learned, the more she realized that the risks outweighed any perceived benefit.
Recognizing That Inappropriate Tests Can Cause Anxiety
N. Lynn Henry, MD, PhD, the director of breast medical oncology at the Huntsman Cancer Institute at the University of Utah in Salt Lake City, sees the study as useful in better understanding how best to deal with survivorship, a term used for ongoing care and surveillance during the years — or decades — after a cancer patient receives treatment intended to cure her of her disease. In women with early-stage breast cancer, this period would follow initial treatment.
It’s not an easy time for patients. After initial treatment for breast cancer concludes, follow-up visits are less frequent, but patients still need support. It’s an adjustment, says Dr. Henry. In Mapes's words: “You feel like you’ve been dropped off a cliff and you don’t know where to turn.”
Patients are vulnerable to the idea that further testing may be a good idea during this period of ongoing surveillance and clinic visits, especially as they adjust to changes in their body following surgery and treatment.
Mapes has sternum pain that is actually caused by her breast implants. “You need to stare it down,” she says, in reference to coping with the changes, “because these are not necessarily symptoms of recurrence."
Among other tips for handling this time:
- Be aware that many insurance companies won’t cover the additional tests for early-stage breast cancer and that you could end up with a huge bill if you get them.
- Ask your doctor what symptoms you should report right away and how frequently you should be checked to see if the cancer returns.
- Continue to see your primary care doctor, because many health problems that emerge have nothing to do with cancer — but still need attention.
Video: Planning a Metastatic Breast Cancer Retreat | Johns Hopkins Kimmel Cancer Center
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