Breast cancer survivors not always clear about follow up care

According to the American Society of Clinical Oncology, the purpose of follow up care is to keep patients in good health, manage side effects from treatment, find out if cancer has returned, and screen for other types of cancer, along with providing emotional support.

Many patients in the study understood this, to some extent. “When patients were asked about the aims of breast cancer follow-up, they most frequently mentioned that follow-up was to detect recurrence or give reassurance,” according to a report in Maturitas.

But 12 patients said they were somewhat uncertain about the aims of follow-up.

And some women believed – incorrectly – that breast cancer could not recur after two to five years of follow-up, and that recurrences could not develop directly after or between follow-up appointments.

Dr. Annette Berendsen and colleagues at University Medical Center Groningen in The Netherlands interviewed 61 women with a history of early-stage breast cancer.

The women were in their early 60s, on average, and had been diagnosed with breast cancer an average of seven years earlier. All had undergone some type of surgery, and 39 had also received radiation.

Many of the women reported feeling scared, worried and distressed before follow up visits, and roughly a quarter said the appointments made them felt anxious and as if they were dealing with their breast cancer again. But after receiving news they were cancer-free, most said their worries disappeared.

Some mentioned “surveillance for metastatic disease” as the reason for follow up while others couldn’t identify different ways the cancer could return. Women also questioned whether physical exams and mammography could detect any signs of their cancer returning, while others valued the tests in their follow up visits.

Dr. Gary Lyman, who specializes in breast cancer research and treatment at the Hutchinson Institute for Cancer Outcomes Research, told Reuters Health by phone, “This study confirms patients’ misconceptions of what the purpose and goals of follow up care is all about.”

Lyman, who was not involved with the study, recommends that doctors be clear with their patients as to why certain tests are necessary and others aren’t.