That's the main finding of an anonymous Internet-based survey of more than 1,000 patients.
"The surveyed women also reported higher rates of lingering pain and swelling than expected," says researcher Christine Hill-Kayser, MD, assistant professor of radiation oncology at the Abramson Cancer Center of the University of Pennsylvania in Philadelphia.
Over the past two years, 1,046 women filled out the Web questionnaire that can be accessed by anyone, she says. About half had undergone breast conservation surgery and radiation.
Among the findings:
- 16% rated the appearance of their treated breast as "excellent, identical to the other breast."
- 52% said it was "good, with minimal differences from the other breast."
- 30% said "fair, with obvious differences from the other breast."
- 2% said the appearance of the treated breast was "poor."
Doctors Cite Good or Excellent Results in Most Cases
"There was no difference between these answers and those of surveyed women who underwent mastectomy and reconstructive breast surgery," Hill-Kayser says.
In contrast to these results, doctors rated more than 90% of their patients treated with breast-conserving surgery as having "excellent" or "good" cosmetic results in a recent study, she says.
Hill-Kayser tells WebMD that she thinks doctors are more likely to feel they have eradicated the cancer and preserved the breast and that is an “excellent” outcome.
"Women queried may have higher expectations because they are talking about their own body and body image," she says.
Hill-Kayser was surprised that the cosmetic ratings were basically identical among women who underwent breast conservation surgery and radiation compared with women who had a mastectomy and reconstructive surgery.
"As surgical techniques have improved, reconstruction results have become excellent," she said. "Mastectomy isn't the debilitating surgery it used to be."
Hill-Kayser spoke here at the annual meeting of the American Society for Radiation Oncology.
Side Effects After Breast-Conserving Surgery
When it comes to long-lasting side effects among breast cancer survivors who underwent breast-conserving surgery, 43% of those surveyed reported chronic skin changes, 22% had chronic pain in the breast or arm, 21% reported loss of arm or shoulder flexibility, and 8% had chronic swelling in the treated breast.
During the question-and-answer period after the talk, Hill-Kayser was asked if she was concerned about the results being skewed since people who feel they have poor outcomes may be more likely to report it.
Hill-Kayser acknowledges the limitation. "But many survivors may be more likely to report truthful results anonymously. So the drawback is somewhat offset by the anonymous nature of the survey," she says.
Asked to comment on the study for WebMD, Matthew S. Katz, MD, medical director of radiation oncology at Radiation Oncology Associates in Lowell, Mass., agrees that "patient-reported answers may be more accurate than physician-reported measures where they are trying to interpret what a patient feels.
"This is helpful to me in my practice. I often tell patients that the likelihood of favorable [cosmetic results] may not be as high as reported.
"That said, in my practice, women who have had breast-conserving surgery don't regret it. They are happy they kept their breast," Katz says.
He advises women online to make sure health surveys are encrypted to ensure privacy.
In the U.S. more than half of women with breast cancer opt for breast-conserving surgery, Hill-Kayser says.
When choosing treatment for breast cancer, patients should express any concerns about cosmetic results or long-lasting side effects with their doctor, she advises.