(Reuters Health) - Most women with breast cancer don't make decisions about surgical reconstruction that are based on knowledge and in line with their own preferences, suggests a small U.S. study.
"We found that about 60 percent had adequate knowledge and about 60 percent had treatment that fit their preferences," said lead author Dr. Clara Lee, of the Ohio State University Comprehensive Cancer Center - Arthur G James Cancer Hospital and Richard J Solove Research Institute in Columbus.
"Then when we put them together, 43 percent had both," she told Reuters Health.
Lee and colleagues write in JAMA Surgery that surgical reconstruction after breast removal, known as mastectomy, can improve a woman's body image and quality of life, but comes with risks.
Those risks include tissue death, the need for more surgery to fix problems, uneven breasts and problems with the breast implant, according to the American Cancer Society.
The best choices for women depend partly on their personal goals, Lee and colleagues write.
"The two key aspects of decisionmaking – not just in medical decisions - are how well you know the facts and the other domain is your personal preferences," said Lee.
To examine the quality, based on these criteria, of decisions that women make about breast reconstruction, the researchers surveyed 126 women aged 21 years and older who were being treated for stage I to III breast cancer at the North Carolina Cancer Hospital in Chapel Hill.
The survey asked women about a number of issues to gauge their knowledge, including recovery, risks and the effects of radiation treatment. Similarly, the survey asked women about a number of issues to find out their preferences, including how they wanted to look with or without clothes, acceptable risk and recovery time.
About 70 percent of the women were considered informed, which meant scoring above 50 percent on the knowledge test. The average score was just under 59 percent.
Based on preferences, the researchers calculated that 67 percent of the entire group preferred mastectomy only, but only about 48 percent of these women ended up having that treatment.
The remaining third of the entire group were calculated to have a preference for mastectomy with reconstruction, and 88 percent of these women had those surgeries.
Overall, just 52 out of 120 women, 43 percent, made high-quality choices, meaning the women were informed and proceeded with the treatment that was aligned with their preferences.
Lee said the researchers expected there to be deficits in choice quality, but not to this magnitude.
"I think the main takeaway is that patients and surgeons need to work together to make these decisions better than they currently are," she said.
Dr. Babak Mehrara, who is chief of plastic and reconstructive service at Memorial Sloan Kettering Cancer Center in New York, said the challenge is to provide patients with information that is digestible, easily understandable and have them make decisions in a timely manner.
"They’re getting hit with a lot of information," said Mehrara, who was not involved with the new study.
He told Reuters Health that tools that help people make good decisions are important along with the advice of physicians.
Additionally, Mehrara said it's good for people to do their own research, but he added that it's important to take their doctor's advice into consideration.
"The material that is available online is great, but it’s no substitute for speaking to an expert," he said.
Lee also said it's important for patients to advocate for themselves when their doctors don't fully inform them of the risks or don't ask for their preferences.
"What you can do is say, 'you haven’t asked me that, let me tell you,'" she said.
SOURCE: bit.ly/2qwIN6v JAMA Surgery, online May 3, 2017.