When actress Angelina Jolie learned she was at high risk for breast cancer, she opted to have both breasts removed and reconstructed. Since then, many women who are not at high risk have, nevertheless, followed her lead.
Now, a PhD candidate at the University of Virginia’s School of Nursing hopes to reverse that trend.
When Crystal Chu began caring for cancer patients, she was surprised to find many women who had cancer in one breast decided to remove the other one too. They may have worried about symmetry – wanting both sides of their body to look the same, or they might have thought removing both breasts would prevent future problems.
“There’s a fear of getting cancer again on the other side,” she explains. “Even though the chances of that are very low, there’s still a risk, and so women are very fearful of that and think, ‘If I just remove both, I won’t have to worry about cancer anymore.’”
In fact, removing the second breast does not completely eliminate the risk of a second cancer diagnosis.
“That’s because there are going to be some scattered breast cells that do get left behind,” says surgical oncologist Lynn Dengel. “Those cells could theoretically become a cancer down the road.”
The American Society of Breast Surgeons discourages the practice in women at average risk of cancer.
“Any time you do additional surgery you’re going to have additional surgical risk or a complication from the surgery itself or from reconstruction if the woman is going to choose to pursue reconstruction.”
And Crystal Chu says many women she met regretted the decision to remove a healthy breast.
“They had already made that decision,” she recalls. “Now they were living with life after having chemotherapy, surgery, and just hearing them tell their stories about not realizing how painful the surgery would be and the complications that happen. Some had an infection after their surgery, which delayed their chemotherapy.”
To help women make a well-considered decision and perhaps to avoid regrets, Chu has developed a kind of survey or decision aid that doctors or nurses can use when talking with their patients. It helps the patient think through her concerns and get relevant information. It also reminds the doctor that more surgery may not mean a better outcome.
“When you’re using a decision aid, it’s not only beneficial to the patient to identify what their priorities are,” Chu says. “It’s also a way for the physician to recognize their own biases, because the physician may come in, and they have a plan in their mind that they’re ready to implement for that patient, and it’s a way for them to also take a step back and realize that the patient’s priorities may not match their person goals. It’s really important to get both patient and physician on the same page.”
UVA Nursing Professor Randy Jones, an expert on decision-making tools for prostate cancer, is advising Chu. He says this approach encourages patient participation in making a choice.
“Individuals who utilize a decision aid are glad that they actually have used it, because then they feel like they are part of the actual process versus someone who’s being dictated to,” he says.
And finally, Chu says, it offers the patient’s loved ones a chance to weigh in.
“This can take 30-40 minutes to go through it with them, and then you hope they have time to take it home. If they have a support person, a friend, your spouse, whoever you’re close with and get their input as well.”
Chu hopes to begin a study later this year, working with fifty patients to see how well the decision-making aid actually works.
***Editor's Note: The University of Virginia School of Nursing is a financial supporter of Radio IQ.
This report, provided by Virginia Public Radio, was made possible with support from the Virginia Education Association.
