Well, that was a disturbing article in my local paper about Angelina Jolie choosing to remove her breasts. Jolie was quoted that her breast cancer risk was an astronomically high number, which I found disturbing. So I got to wondering:
How effective is preventative mastectomy?
One study says it’s eighty percent effective (based on what?), and that up to half of them suffer from negative body images after the surgery.
When compared to mastectomy, breast conserving therapy improved patients’ “body image, role, and sexual functioning.” More disturbingly, breast conserving therapy had better overall health outcomes. “Even patients > or =70 years of age reported higher body image and lifestyle scores.”
So why the trend toward mastectomy?
Even the supporters of prophylactic mastectomy admit that it has a “negative impact on body image, the intimate relationship and physical wellbeing.” (Breast Cancer Res Treat. 2002 May;73(2):97-112)
The saving grace is that you don’t get the cancer, right?
We’ve got studies showing that, don’t we? No.
It turns out that if you get a preventative mastectomy or a prophylactic mastectomy, we have no studies that show you don’t get breast cancer, or that you live longer. It seems reasonable to think that since you have less breast you have less breast cancer, but the same genetic mutations that increase the risk of breast cancer also increase the risk of ovarian cancer, so you may get that instead. Here’s the task force quote: “A primary care approach to screening for BRCA genetic susceptibility for breast and ovarian cancer has not been tested. No studies directly evaluated whether screening by risk assessment and BRCA mutation testing leads to a reduction in the incidence of breast and ovarian cancer and cause-specific and/or all cause mortality.” I put the abstract at the end.
Ok, so we know that outcomes from mastectomy are worse for women in terms of image, self-esteem, intimate relationships, and overall mood. We don’t know if removing the breasts conclusively prevents anything, because we don’t have any studies. It seems a bit premature to start recommending breast removal. I wonder if Ms. Jolie was given the full picture of the situation before she went under the knife.
J Midwifery Womens Health. 2006 Nov-Dec;51(6):e45-9.
Body image after bilateral prophylactic mastectomy: an integrative literature review.
Nurse-Midwifery educational program, University of Illinois at Chicago, IL, USA. email@example.com <firstname.lastname@example.org>
Bilateral prophylactic mastectomy (BPM) can reduce a woman’s risk for breast cancer by 80%. Thus, women who are at high risk for familial breast cancer are increasingly opting for BPM as a preventative option. Research indicates that there are psychological benefits to BPM, including a reduction in anxiety about developing breast cancer. The purpose of this integrative review is to summarize the research that has examined the effect of prophylactic mastectomy on women’s subsequent body image. Thirteen studies were reviewed. The majority of women were satisfied with their decision. However, the majority of studies indicate that up to one-half of the women suffer a negative effect on body image and changes in sexuality. Knowledge of these findings can improve the practitioner’s ability to counsel women regarding this radical decision. Further research, particularly prospective studies, are needed to examine women’s body image prior to BPM so that the impact of prophylactic mastectomy can be examined more thoroughly.
Breast J. 2004 May-Jun;10(3):223-31.
Quality of life following breast-conserving therapy or mastectomy: results of a 5-year prospective study.
Engel J, Kerr J, Schlesinger-Raab A, Sauer H, Hölzel D.
There are many conflicting results in the literature comparing quality of life following breast-conserving therapy (BCT) and mastectomy. This study compared long-term quality of life between breast cancer patients treated by BCT or mastectomy in three age groups. Patients (n = 990) completed a quality of life survey, including the European Organization for Research and Treatment of Cancer Quality of Life Core Questionnaire (EORTC QLQ-C30), at regular intervals over 5 years. In the cross-sectional data, mastectomy patients had significantly (p < 0.01) lower body image, role, and sexual functioning scores and their lives were more disrupted than BCT patients. Emotional and social functioning and financial and future health worries were significantly (p < 0.01) worse for younger patients. There were no differences in body image and lifestyle scores between age groups. There was also no interaction between age and surgery method. Even patients > or =70 years of age reported higher body image and lifestyle scores when treated with BCT. The repeated measures analysis indicated that four functioning scores, half the symptom scores, future health, and global quality of life improved significantly (p < 0.01) over time. All these variables increased significantly for BCT patients and those 50 to 69 years of age. Body image, sexual functioning, and lifestyle disruption scores did not improve over time. BCT should be encouraged in all age groups. Coping with appearance change should be addressed in patient interventions.
Nelson HD, Huffman LH, Fu R, Harris EL, Walker M, Bougatsos C.
Breast cancer is the second most common cancer in women in the U.S. and is the second leading cause of cancer death. Although less common, ovarian cancer is associated with high morbidity and mortality. Both breast and ovarian cancer are associated with a family history of these conditions and, in some families, the pattern of cancers suggests the presence of a dominantly inherited cancer susceptibility gene. Two genes, BRCA1 and BRCA2, have been identified as breast cancer susceptibility genes, and clinically significant mutations are estimated to occur in about 1 in 300 to 500 of the general population.
Screening for inherited breast and ovarian cancer susceptibility is a two-step process that includes an assessment of risk for clinically significant BRCA mutations followed by genetic testing of high-risk individuals. The evidence synthesis describes the strengths and limits of evidence about the effectiveness of selecting, testing, and managing patients in the course of screening in the primary care setting. Its objective is to determine the balance of benefits and adverse effects of screening based on available evidence. The target population includes adult women without preexisting breast or ovarian cancer presenting for routine care in the U.S.
Relevant studies were identified from multiple searches of MEDLINE® (1966 to October 1, 2004), Cochrane Library databases, reference lists of pertinent studies, reviews, editorials, and websites, and by consulting experts.
Investigators reviewed all abstracts identified by the searches and determined eligibility by applying inclusion and exclusion criteria specific to key questions about risk assessment, mutation testing, prevention interventions, and potential adverse effects including ethical, legal, and social implications (ELSI). Eligible studies had English-language abstracts, were applicable to U.S. clinical practice, and provided primary data relevant to key questions.
All eligible studies were reviewed and data were extracted from each study, entered into evidence tables, and summarized by descriptive and statistical methods as appropriate. Two reviewers independently rated the quality of studies using USPSTF criteria.
A primary care approach to screening for BRCA genetic susceptibility for breast and ovarian cancer has not been tested. No studies directly evaluated whether screening by risk assessment and BRCA mutation testing leads to a reduction in the incidence of breast and ovarian cancer and cause-specific and/or all cause mortality. Assessment tools that estimate the risk of clinically significant BRCA mutations are available to clinicians, but have not been widely evaluated in primary care settings. Several referral guidelines have been developed for primary care, but there is no consensus or gold standard for use. Trials reported that genetic counseling may increase accuracy of risk perception, and decrease breast cancer worry and anxiety. Estimates of breast and ovarian cancer occurrence, based on studies of BRCA mutation prevalence and penetrance, can be stratified by family history risk groups that are applicable to screening. However, studies are heterogeneous and estimates based on them may not be reliable. Studies of potential adverse effects of risk assessment, genetic counseling, and testing reported decreased rather than increased distress. A meta-analysis of chemoprevention trials in women with unknown mutation status indicated statistically significant effects of selective estrogen receptor modulators in preventing breast cancer and estrogen receptor positive breast cancer, and significantly increased risks for thromboembolic events and endometrial cancer. Observational studies of prophylactic mastectomy and oophorectomy indicated reduced risks of breast and ovarian cancer in BRCA mutation carriers. Studies of patient satisfaction with surgery had mixed results; cancer distress improved, but self-esteem, body image, and other outcomes were adversely affected in some women. Applying this evidence to an outcomes table indicated that the numbers needed to screen to prevent one case of breast (4,000–13,000) or ovarian cancer (7,000) are high among women with an average risk of having a clinically significant BRCA mutation, and decrease as risk increases. Adverse effects also increase as more women are subjected to prevention therapies.
The evidence base for genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility as a screening strategy is limited by lack of studies demonstrating effectiveness, biases inherent in studies conducted in highly selected populations, and incomplete information on adverse effects.
- Angelina Jolie’s Double Mastectomy: What We Know About BRCA Mutations and Breast Cancer (healthland.time.com)
- Lessons from Angelina: The Tricky Calculus of Cancer Testing (nation.time.com)
- How common is the BRCA gene mutation that Angelina Jolie has? (o.canada.com)
- Angelina Jolie Reveals She Had Double Mastectomy (ktla.com)
- Angelina Jolie’s Double Mastectomy (getintomedicineuk.com)
- The 6th Floor Blog: Reacting to Angelina Jolie’s Breast Cancer News (6thfloor.blogs.nytimes.com)
- A Cautionary Perspective On Angelina Jolie’s Double Mastectomy (forbes.com)
- Lessons from Angelina Jolie: The Tricky Calculus of Cancer Testing (nation.time.com)
- Angelina Jolie’s Double Mastectomy: Will More Women Choose This Surgery? (news.health.com)
- Double Mastectomy: What We Know About BRCA Mutations and Breat Cancer (spiritandanimal.wordpress.com)