Survey: Women Happy With Prophylactic Mastectomy Choice 20 Years Later

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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. Removing the other healthy breast is called contralateral prophylactic mastectomy.

The healthy breast usually is removed because of understandable fear that a new, second breast cancer might develop in that breast. Some doctors are concerned that too many women are choosing the very aggressive step of contralateral prophylactic mastectomy during or shortly after breast cancer surgery because they overestimate their risk of future breast cancer.

Despite these concerns, survey results presented at the 2011 Annual Meeting of the American Society of Breast Surgeons said that 90% of women who decided to have contralateral prophylactic mastectomy were satisfied with their decision 20 years after the surgery and most would make the same decision again.

When you're first diagnosed with breast cancer, fears about the future can affect how you make decisions. It's understandable that many women would want to eliminate any risk of another breast cancer developing in the healthy breast by choosing contralateral prophylactic mastectomy. Still, the actual risk of a new breast cancer developing in the healthy breast is likely to be much lower than many women think when breast cancer is first diagnosed and treated.

A small 2010 study found that women considering contralateral prophylactic mastectomy overestimated their risk of developing breast cancer in the healthy breast. Once they took time to carefully consider their actual risk of developing a new breast cancer, they usually decided against removing the healthy breast.

The 2011 results are based on two surveys. One survey was sent to women who had prophylactic mastectomy about 10 years earlier. Another survey was sent to women who had prophylactic mastectomy about 20 years earlier. All of the women had surgery at the Mayo Clinic in Rochester, Minn., between 1960 and 1993.

More than 580 women responded to the 10-year survey. Results showed:

  • Overall, 86% of the women were satisfied with their decision to have contralateral prophylactic mastectomy
    • 46% were very satisfied
    • 40% were somewhat satisfied
  • 5% were somewhat dissatisfied
  • 1.2% were very dissatisfied

About 90% of the women said they would make the same decision; 5.4% said they would not.

Nearly 270 women responded to the 20-year survey. Results showed:

  • 90% of women were satisfied with their decision to have contralateral prophylactic mastectomy
    • about 50% were very satisfied
    • about 50% were somewhat satisfied
  • 4% were somewhat dissatisfied
  • 2% were very dissatisfied

About 93% of the women felt their decisions were informed decisions. About 92% of the women said they would make the same decision; 3% said they would not.

Some of the women who responded to the surveys said prophylactic mastectomy had caused some undesirable effects. The proportion of women who said this was about the same for both the 10-year and the 20-year surveys. The undesirable effects included:

  • body appearance concerns -- 29% at 10 years and 31% at 20 years
  • sexual relationship concerns -- 24% at 10 years and 23% at 20 years
  • femininity concerns -- 21% at 10 years and 24% at 20 years
  • self-esteem concerns -- 12% at 10 years and 10% at 20 years
  • concerns about overall emotional stability -- 10% at 10 years and 7% at 20 years

Overall, the survey results suggest that most women who decide to have contralateral prophylactic mastectomy will be satisfied with that decision many years later.

A 2009 study on contralateral prophylactic mastectomy found that women with a specific breast cancer risk profile or women who had been diagnosed with breast cancer with certain characteristics got the most benefits from prophylactic mastectomy. The women who got the most benefits had any one of the three following factors:

  • A Breast Cancer Risk Assessment Tool score (also called a Gail score) of more than 1.67% risk. The Gail score is based on a series of specific personal health questions that women and their doctors answer together. The score estimates the risk of a woman developing invasive breast cancer in the next 5 years.
  • A pathology report that showed invasive lobular breast cancer (ILC), which is less common than invasive ductal breast cancer (IDC).
  • Breast cancer in more than one location in the breast.

Women with any one of the three factors were more than 3 times more likely to develop cancer in the opposite breast than women who had none of the factors. Prophylactic mastectomy may make the most sense for women with any one of the three factors.

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 that may be the right decision for you, give yourself the time you need to consider your decision carefully. Talk to your doctor to make sure that your decisions are based on your actual risk. Ask your doctor about your Gail score and how the cancer details in your pathology report may affect your future risk. Together, you and your doctor can make the decisions that are best for you and your unique situation.

The National Cancer Institute's Gail score page has more information about the tool.

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