How Do Diagnosed Young Women Make Decisions About Having Opposite Healthy Breast Removed?

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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 -- a double mastectomy. 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. More and more women who’ve been diagnosed are opting for contralateral prophylactic mastectomy -- in the late 1990s, between 4% and 6% of women who were having a mastectomy decided to have the other healthy breast removed. More recently, between 11% and 25% of women having a mastectomy decided to have contralateral prophylactic mastectomy. In particular, more women who are diagnosed with breast cancer at age 40 or younger are deciding to have the other healthy breast removed. 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.

Researchers wanted to know how these younger women were making the decision to have contralateral prophylactic mastectomy.

A small study has found that most younger women diagnosed with early-stage breast cancer who decide to have prophylactic mastectomy choose the surgery because they want to reduce their risk of breast cancer developing in the other breast and improve their survival, even though most of them know that removing the other healthy breast doesn’t really improve survival rates in women with an average risk of breast cancer who are diagnosed with early-stage disease.

The study was published online on September 16, 2013 by Annals of Internal Medicine. Read the abstract of “Perceptions, Knowledge, and Satisfaction With Contralateral Prophylactic Mastectomy Among Younger Women With Breast Cancer.”

While removing the other healthy breast does reduce the risk that breast cancer will develop in that breast, most women diagnosed with early-stage breast cancer who don’t have an abnormal BRCA1 or BRCA2 gene or a strong family history of breast cancer have a low risk of cancer developing in the other breast -- about 0.5% to 0.75%. Also, this risk goes down over time for women who get adjuvant treatments. Adjuvant treatments are treatments given after surgery to lower the risk of breast cancer coming back or a new breast cancer developing. Adjuvant treatments can include radiation therapy, hormonal therapy medicines, chemotherapy medicines, and targeted therapy medicines.

The Young Women’s Breast Cancer Study (YWS) is looking at issues that are specific to young women diagnosed with breast cancer. The women in the YWS fill out surveys twice a year for the first 3 years after they’re diagnosed and then once a year for the next 7 years.

For this study, the researchers sent an extra survey to 159 women in the YWS who were age 40 or younger when diagnosed with early-stage breast cancer in one breast between 2006 and 2010 and decided to have prophylactic mastectomy. Not all the women completed the survey and the researchers used responses from 123 women.

The extra survey asked the women questions about:

  • family history of breast cancer
  • any known abnormal genes, including BRCA1 and BRCA2
  • the factors that affected the decision to have contralateral prophylactic mastectomy
  • their confidence that they had made the right surgery choice
  • their knowledge about breast cancer, including their perceptions of the risk of contralateral breast cancer and the risk of breast cancer recurrence
  • who first proposed contralateral prophylactic mastectomy

The women who completed the extra survey were ages 26 to 40 when diagnosed and completed the survey about 2 years after they were diagnosed:

  • 94% had reconstruction
  • 79% were diagnosed with stage I or stage II breast cancer
  • 60% were diagnosed with estrogen-receptor-positive breast cancer
  • 61% were diagnosed with HER2-negative cancer
  • 60% didn’t have an abnormal BRCA1 or BRCA2 gene
  • 18% had an abnormal BRCA1 gene
  • 7% had an abnormal BRCA2 gene
  • 71% didn’t have a mother or sister diagnosed with breast or ovarian cancer, 26% did, and 3% were unsure

The researchers found that almost all of the women (98%) said that reducing their risk for contralateral breast cancer was an extremely or very important reason why they decided to have contralateral prophylactic mastectomy. Other extremely or very important reasons were:

  • peace of mind (95% of the women)
  • improve survival (94% of the women)
  • prevent breast cancer from spreading to other parts of the body (85%)

Women who knew they had an abnormal BRCA1 or BRCA2 gene were more accurate at estimating their risk of contralateral breast cancer. Women who knew they didn’t have an abnormal gene overestimated their risk of contralateral breast cancer.

About 87% of the women reported being extremely or very concerned about being diagnosed with contralateral breast cancer in the future and 90% were at least a little worried about their current diagnosis when they had surgery. Most of the women understood that contralateral prophylactic mastectomy doesn’t improve breast cancer survival in women with an average risk of breast cancer who are diagnosed with early-stage disease.

Overall, most of the women were satisfied with their decision to have contralateral prophylactic mastectomy:

  • 80% of the women were extremely confident in their decision
  • 90% of the women said they would definitely make the same decision again
  • 97% of the women said they knew the risks and benefits of their options
  • 96% of the women said they knew which risks and benefits matter most
  • 92% of the women said they had enough support and advice to make the choice
  • 93% were sure contralateral prophylactic mastectomy was the right choice for them

Still, many women said that a number of the outcomes of contralateral prophylactic mastectomy were worse than they expected:

  • 33% said they had more surgeries/procedures than they expected
  • 28% said they had numbness or tingling in their chest that was worse than expected
  • 42% said their sense of sexuality was worse than expected after surgery
  • 31% said their self-consciousness about their appearance was worse than expected

The women felt their doctors were their most important sources of information on contralateral prophylactic mastectomy, and more than half of the women said they were the first to bring up the idea of having their other healthy breast removed.

While 80% of the women said they talked to their doctors about reasons to have contralateral prophylactic mastectomy, only 51% said their doctors talked to them about reasons why they shouldn’t have the surgery.

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.

Overall, the results of this study are reassuring. Nearly all of the women were confident in their decision to have contralateral prophylactic mastectomy and would make the same decision again. But some of the results are troubling. Nearly half of the women said their sense of sexuality was worse than they expected after the surgery and about a third were self-conscious about their appearance. This suggests that many doctors aren’t clearly explaining all the risks associated with contralateral prophylactic mastectomy; sure enough, the study found that about half of them aren’t.

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 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. Talk to your doctor about how the details in your pathology report may affect your future risk. Make sure you understand both the benefits and the risks of all your options. Together, you and your doctor can make the decisions that are best for you and your unique situation.

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