by Lisa Rezende, PhD
The ABOUT Patient-Powered Research Network conducts to uncover issues that affect the hereditary cancer community. People at increased cancer risk due to an inherited mutation in BRCA or other gene and/or a strong family history of cancer face a variety of choices when it comes to managing cancer risk. Evidence-based national guidelines recommending care exist for some decisions; more research is needed for others. Engagement surveys such as these are an early step in deciding the ABOUT network research priorities.
In this survey, we looked at women’s decisions about managing their breast cancer risk. Current national guidelines recommend women at high-risk for cancer undergo enhanced screening, including MRI. For women with mutations in some genes, including BRCA, PTEN, TP53, and CDH1, the guidelines also recommend discussing the option of risk-reducing preventative bilateral mastectomy—removing both breasts. These guidelines do not recommend for or against mastectomy in women who have not had breast cancer. In this survey, the ABOUT network asked women about their experiences with managing breast cancer risk in general, and specifically about making decisions regarding mastectomy. The survey was promoted through the FORCE website, social media, and email newsletter.
Over 500 women responded to our survey on mastectomy for treating or managing breast cancer risk. Their ages varied:
Most women had mutations in either BRCA1 (50%) or BRCA2 (40%), with a smaller number reporting mutation in other genes including CHEK2, RAD51C, RAD50, PALB2, and PTEN. Both cancer survivors and previvors responded, with 60% reporting they had never had cancer, 38% had breast cancer, 9% had ovarian, fallopian tube, or primary peritoneal cancer, and 7% had other cancers.
One important note: because the respondents are engaged in the hereditary breast and ovarian cancer community through FORCE, they may be more aware or educated about the issues and decisions covered in this survey.
About two-thirds of the women who responded had mastectomy; most (63%) had bilateral mastectomy, and a much fewer (2%) had mastectomy of one breast.
Among breast cancer survivors with mutations in BRCA or other genes that increase cancer risk, mastectomy was more common: 82% had bilateral mastectomy, and 8% had unilateral mastectomy, compared to 56% of previvors who had mastectomy while 44% did not.
Most women reported being satisfied with their decision to have a mastectomy, with 83% saying they were very satisfied and 12% somewhat satisfied.
When we compared overall satisfaction with mastectomy between breast cancer survivors and women who have never had breast cancer, we saw no difference—over 80% of both groups were satisfied with their decision.
Satisfaction was not as clear cut for women who have not had mastectomy: 48% reported that they are satisfied or very satisfied, 32% said that they were neither satisfied nor dissatisfied, and 19% reported that they are dissatisfied or very dissatisfied with their decision.
This question revealed interesting differences between breast cancer survivors and women who have never had breast cancer. A greater percentage of survivors said that they are very or somewhat satisfied with their decision not to have mastectomy (77%) compared to women who have not had breast cancer (48%). However, it is important to note that the sample size of breast cancer survivors who did not have mastectomy was quite small—only 13 women.
National guidelines recommend that health care providers discuss mastectomy with women at high risk for cancer due to a mutation in BRCA and certain other genes, but the guidelines do not recommend specifically for or against mastectomy. To understand how health care providers are using these guidelines, we asked women who had mastectomy if they did so to follow their health care provider’s recommendation. Just over half (56%) said their health care provider recommended mastectomy; 42% reported that their health care provider presented mastectomy as an option but did not recommend for or against. A much smaller number (2%) reported that they had mastectomy despite their health care provider’s recommendation against it.
Results were similar among women who did not have mastectomy: 48% reported that their health care provider presented mastectomy as an option but did not make a recommendation for or against. Only 9% of women said their health care provider had not offered mastectomy as an option.
Half of the women who have not yet had mastectomy are considering the surgery in the next year (30%) or five years (20%), with only 11% stating they are not considering mastectomy at all.
We asked how different factors influenced women’s choices for or against mastectomy. Most reasons for mastectomy pointed to concerns about cancer risk. Most reasons against mastectomy centered on effects of the surgery.
The top five reasons cited as strongly influencing or somewhat influencing the decision to have mastectomy were:
Given that this survey was completed only by women who are affected by hereditary breast and ovarian cancer, the prominence of genetic test results and family history of cancer are not surprising. More than half of the women cited stress about breast cancer screening as influencing their decision to have mastectomy.
The top five reasons cited as strongly influencing or somewhat influencing the decision against mastectomy were:
The majority of women (90%) who responded to our survey have undergone breast reconstruction, with only a small fraction (7%) stating that they do not plan to have reconstruction in the future. This is a much higher proportion than one might expect from previous studies that show the majority of women do not have reconstruction1. This discrepancy might be explained by the population surveyed and the inclusion of women who have not had breast cancer.
We looked at complications in two ways: first by asking women if they experienced complications, then by listing a number of short-term and long-term complications associated with mastectomy. When we asked whether or not women had complications, one-third reported that they did.
However, when we identified specific complications, just over 60% had experienced one or more of the complications listed. The most common complications reported were loss of muscle strength or mobility, infection, and seroma.
Medications, including tamoxifen and raloxifene, reduce cancer risk in both breast cancer survivors and previvors. These drugs are prescribed to women who have had breast cancers that express hormone receptors (ER+ and/or PR+), but the medications may also be prescribed to women who are at high risk for breast cancer. Not surprisingly, breast cancer survivors were more likely (51%) to have taken one of these drugs. Use of medication to reduce breast cancer risk in previvors, on the other hand, was rare: only 8% of respondents had taken one of the drugs.
National guidelines recommend that women with BRCA mutations have their ovaries and fallopian tubes removed to reduce their risk of ovarian cancer. Removal of the ovaries has also been shown to reduce breast cancer risk by about 50%. We asked women who have undergone risk-reducing removal of their ovaries about their reasons, allowing them to select all that apply. About 30% said that reducing their risk of breast cancer was one of the reasons they removed their ovaries.
National guidelines currently recommend that doctors discuss mastectomy with women who have BRCA mutations. For breast cancer survivors with mutations in BRCA or other genes that affect breast cancer risk, mastectomy can reduce the risk of a second breast cancer. Our survey shows that women who have had mastectomy are generally satisfied with their decision. The ABOUT network engagement surveys are used to generate preliminary data for research studies. To learn more on how to enroll in ABOUT network research, please go to www.aboutnetwork.org.
1Morrow M, Li Y, Alderman AK. et al., “Access to Breast Cancer Reconstruction After Mastectomy and Patient Perspectives on Reconstruction Decision Making.” JAMA Surgery Vol. 149, No. 10, pp. 1015-1021, October 2014.
posted January 27, 2016