National Cancer Institute NCI Cancer Bulletin: A Trusted Source for Cancer Research News
November 17, 2009 • Volume 6 / Number 22

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A Closer Look

Exploring the Reasons Women Choose Mastectomies

Percent use of breast-conserving surgery (BCS) by state. Darker shading in New England, the Mid-Atlantic States, Florida, and the West Coast represents higher frequency of use. The mountain states and deep south have lower use of BCS, with Mississippi having the lowest use in the nation. Not shown are Alaska (55 percent) and Hawaii (67 percent). Percent use of breast-conserving surgery (BCS) by state. Darker shading in New England, the Mid-Atlantic States, Florida, and the West Coast represents higher frequency of use. The mountain states and deep south have lower use of BCS, with Mississippi having the lowest use in the nation. Not shown are Alaska (55 percent) and Hawaii (67 percent). [Enlarge]

Since the 1980s, advances in surgical techniques, radiotherapy, and hormone and chemotherapy treatments have altered the decision-making landscape for women newly diagnosed with early stage breast cancer. Breast-conserving surgery (BCS) followed by radiation has become the preferred course of treatment for many women, based on studies showing it to be as effective as modified radical mastectomy at reducing recurrence and mortality from the disease while preserving breast tissue.

During that time, mastectomy rates “have precipitously declined from virtually 100 percent,” said Dr. Steven J. Katz, of the University of Michigan Health System in Ann Arbor, to around 30 percent, where they appear to have stabilized. But new data indicate that mastectomies may now be on the rise. When patients who are judged to be good candidates for BCS choose mastectomy instead, health care providers want to know why.

“Most surgeons favor the less invasive BCS,” said Dr. Katz, and some health care providers contend that mastectomy rates as high as this “are proof of overtreatment, possibly even mistreatment.” The controversy raises questions about how newly diagnosed breast cancer patients are making their decisions.

“A direct way to reduce concerns about overtreatment is to ensure that women make their decision based on accurate knowledge about mastectomy’s risks and benefits,” said Dr. Sarah T. Hawley, research professor in internal medicine at the University of Michigan.

With major invasive surgery like mastectomy, there is substantial recovery time, and complications such as bleeding or infection are more likely to occur than with BCS. Even though many women elect to have breast reconstruction and are satisfied with the results, “mastectomy is irreversible and can have psychological effects, such as a change in body image and the loss of normal breast functions,” said Dr. Hawley.

Several studies have been published this year that address the factors that might influence women’s choice.

Are Surgeons Influencing the Decisions?
 
Mastectomy rates vary widely around the country, and studies have shown that “the patients of higher-volume surgeons or surgeons working in cancer centers and teaching hospitals are less likely to receive mastectomies,” said Dr. Katz.

Despite the widespread belief by most surgeons that BCS is the preferred treatment, a study led by Dr. Monica Morrow and colleagues in the October 14 Journal of the American Medical Association (JAMA) sheds light on the influence of some surgeons for patients considering mastectomy. This study also helps to address whether mastectomy is being overused. Dr. Morrow is chief of the breast service at Memorial Sloan-Kettering Cancer Center.

Surveys were received from 1,984 women diagnosed with early stage breast cancer (including ductal carcinoma in situ) who were included in the Surveillance, Epidemiology, and End Results (SEER) registries in Detroit and Los Angeles. The researchers oversampled Latina (502) and African American (529) women to better discern differences in race/ethnicity.

Approximately two-thirds of the women in the study underwent BCS only and one-third underwent a mastectomy. Among the women who had a mastectomy, 13 percent based their decision on their doctor’s recommendation, nearly 9 percent chose mastectomy for themselves when their surgeon did not recommend one procedure over the other, and the remaining 9 percent were referred for mastectomy after their initial BCS was unsuccessful.

So, are surgeons influencing women to have mastectomy when there are no categorical clinical reasons for it? “Not in this study,” noted Dr. Katz, who was part of the research team. “Only 6.2 percent reported that their surgeon recommended a mastectomy when they were candidates for both surgery options.” Furthermore, patients who sought a second surgeon’s opinion rarely received a different recommendation. “It is clear,’ said Dr. Morrow, “that surgeons were not the major cause of mastectomy in patients, unless there were medical reasons that precluded BCS.   

“Ultimately the surgeons’ recommendations were sound,” continued Dr. Morrow, who doesn’t believe that more detailed preoperative imaging using techniques such as MRI will help surgeons make better recommendations for or against BCS. In fact, a study presented at the 2008 American Society of Clinical Oncology annual meeting and published in the September 1 Journal of Clinical Oncology suggested that preoperative MRI may do more harm than good by contributing to overdiagnosis and overtreatment, and may result in higher mastectomy rates.

Understanding Treatment Decisions

During the period when BCS evolved to become a viable, comparable, and––ultimately––recommended treatment over mastectomy, little empirical research was done on how women were actually making the decision, said Dr. Katz. Such studies can be tricky to do, he explained, but more have been done in the last decade. This approach has been spearheaded by a new NCI-supported research initiative devoted to studying treatment decision making and quality of care, the Cancer Surveillance and Outcomes Research Team (CanSORT).

To look more closely at what factors might influence a woman to choose mastectomy, Dr. Hawley used the same survey approach described above in another study published October 7 in the Journal of the National Cancer Institute (JNCI), once again oversampling Latinas and African Americans in SEER registries in Detroit and Los Angeles in 2005. What did patients think about their surgeons’ influence? When patients felt that they themselves were the primary decision maker, 27 percent chose mastectomy, a rate that dropped to 16.8 percent when the decision was considered to be a shared one and 5.3 percent when the patient identified the surgeon as the primary decision maker.

In the JAMA study, the researchers concluded that patient preferences—including concerns about recurrence or radiation effects—probably play an important role in the choice of surgery, since a quarter of all mastectomies were elected by patients whose first surgeon did not specifically recommend one approach over the other. “It’s particularly important to evaluate how these patients formulate their preferences for the surgery options,” said Dr. Hawley, a co-author. (See the box below.)

The JNCI study may be the first to evaluate the role of the patient’s family and friends in the choice of surgery. When someone else was present for the discussion about treatment, women more often received mastectomy. Less acculturated Latinas placed the most importance on others’ opinions, and a substantial proportion of women took their spouse’s opinion into account when making the decision. Women who said that their spouse was very important in decision making were less likely to receive an initial mastectomy than women who indicated that their spouse was not or marginally important in their decision making. “This highlights the important role that others may play in shaping treatment discussions and, ultimately, decisions,” said Dr. Hawley.

Beliefs, Perceptions, and Evidence

At face value, said Dr. Katz, “a patient’s preference for mastectomy might seem irrational, but there are a number of issues involved. We know that patients’ concerns about cancer recurrence can greatly influence their surgical treatment decisions and drive preferences for mastectomy. Policymakers and some physicians might underestimate such powerful cognitive and emotional factors that favor the more aggressive treatment.”

“A high quality decision can be defined as one that is fully informed, and consistent with the decision maker’s underlying values,” Dr. Hawley explained. This suggests that the process of decision making might be more important than the actual decision made, said Dr. Katz.

Researchers who study outcomes have found that patients can be more influenced in their treatment decision by how they understand, interpret, and value the factors they are facing than by the data that clinicians often use to buttress their recommendations. Such knowledge about patient preferences and their decision-making process is the foundation for improved risk communication and counseling.

––Addison Greenwood

Tracking Patients through the Process

Researchers at the University of Michigan looked prospectively at patients choosing between breast-conserving surgery (BCS) and mastectomy, and found interesting trends in their results. The women had a mastectomy rate of 39 percent, but only a quarter (10 percent) were candidates for BCS who nonetheless chose mastectomy. The other 29 percent includes patients whose surgery failed to achieve negative margins (3 percent), those with absolute clinical indications against BCS (15 percent), and more than 11 percent whose tumors could not be adequately shrunk by chemotherapy before undergoing surgery. The results were published earlier this year in The Breast Journal.

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