Some women who’ve been diagnosed with early-stage breast cancer in one breast choose to have that breast and the other healthy breast removed -- a double mastectomy. Removing the other healthy breast is called contralateral prophylactic mastectomy.
The healthy breast usually is removed because of a completely understandable fear that a new, second breast cancer might develop in that breast. More and more women who’ve been diagnosed are opting for contralateral prophylactic mastectomy. In 2016, a study found that rates of prophylactic mastectomy more than tripled from 2002 to 2012, even though other studies have shown that removing the other healthy breast doesn’t improve survival.
Because prophylactic mastectomy doesn’t seem to improve survival, doctors wanted to know why so many more women with early-stage disease were choosing that option.
A study suggests that the way a woman makes big decisions, as well as her values, influences the type of surgery she considers for early-stage breast cancer.
The research was published online on Aug. 15, 2017 by the journal Cancer. Read the abstract of “The association between patient attitudes and values and the strength of consideration for contralateral prophylactic mastectomy in a population-based sample of breast cancer patients.”
In the study, the researchers surveyed 2,362 women who had been diagnosed with early-stage breast cancer. The women were diagnosed in Los Angeles and Georgia and were surveyed about 7 months after they had breast cancer surgery.
The survey asked how strongly the women considered contralateral prophylactic mastectomy, as well as about their decision-making style and values.
About 54% of the women said they considered contralateral prophylactic mastectomy; about 25% said they strongly considered that option.
Women who said they were worried about making a bad decision about treatment were more likely to consider contralateral prophylactic mastectomy, as were women who said they went with their gut when making decisions. Women who said they were more logical when making decisions were less likely to consider contralateral prophylactic mastectomy.
- preferred to make their own decisions, rather than relying on their doctor
- didn’t want to worry about the cancer coming back (recurrence)
- wanted to avoid radiation
were more likely to strongly consider contralateral prophylactic mastectomy.
"The decision-making process is complicated. We found there are a lot of values that come into play," said lead study author Sarah Hawley, professor of internal medicine at the University of Michigan.
The findings suggest that contralateral prophylactic mastectomy tends to be driven by patient desire, rather than a doctor's recommendation.
The researchers suggested that doctors and tools that help women make breast cancer treatment decisions need to consider a woman’s values during the process. The researchers who did this study have developed a decision tool that has women do an exercise to prioritize their values, and then maps their values to potential treatment decisions.
"If physicians [know] that a patient likes to make decisions a certain way, they can understand the patient's emotional processing and help the patient make a decision that meets her needs physically and emotionally," Hawley said.
This could mean educating women about misperceptions around risk. Many women overestimate their risk of breast cancer returning and may not have fully considered the impact of double mastectomy. It could also mean acknowledging a woman is uncomfortable with some treatment recommendations.
"A lot of these conversations [about treatment] -- including extensive therapy that may not be truly beneficial in terms of survival -- may come down to emotional values," Hawley said. "Physicians need to help patients feel comfortable with treatment decisions within their underlying nature and values. This includes helping patients understand when less extensive treatment might be the right option. Patients need to feel secure in knowing that choice will give them their best chance at survival."
"It seems logical that more aggressive surgery should be better at fighting disease -- but that's not how breast cancer works," added Reshma Jagsi, professor and deputy chair of radiation oncology at the University of Michigan and another study author. "It's a real communication challenge. As physicians, we want to be respectful of our patients' preferences and values. We don't want to alienate patients who are already in a stressful situation. We want them to trust us. When a patient comes in saying she has already decided on double mastectomy, it can be challenging to strike that balance between respecting her preferences and adequately conveying why the medical community in general doesn't think it's necessary."
When you’re first diagnosed with breast cancer, fears about the future can affect how you make decisions. This is especially true for women who have an abnormal breast cancer gene or who have watched a mother or sister be diagnosed with breast cancer. You have to make a number of decisions at a very emotional time when it can be hard to absorb and understand all the new information you’re being given.
At Breastcancer.org, we support every woman’s right to make treatment decisions based on the characteristics of the cancer she’s been diagnosed with, her medical history, her risk of recurrence or a new breast cancer, and her personal preferences. But it’s very important to make sure you understand all the pros and cons of any treatment or procedure you’re considering, including how the treatment or procedure may affect your reconstruction options and if the treatment is likely to make you live longer.
If you’ve been diagnosed with early-stage breast cancer, ask your doctor about ALL of your treatment and risk reduction options. Contralateral prophylactic mastectomy is only one of these options and is an aggressive step. While it may be the right decision for you, give yourself the time you need to consider the decision carefully. It’s a good idea to talk to your doctor about how the details in your pathology report may affect your future risk. You want to be sure that your decisions are based on your actual risk of recurrence or a new cancer. Make sure you understand the benefits and risks of all your options. Together, you and your doctor can make the choices that are best for you and your unique situation.