People with a genetic mutation linked to cancer risk
Women under 45
Women over 45
Special populations: African American women at high-risk
A study showed that African American women with increased breast cancer risk experienced greater burdens in obtaining information at each step compared to white women. Racial differences in preventive choices correlated with differences in information and provider access. (3/14/19)
|At a glance||Questions for your doctor|
How African American and white women with a higher risk of breast cancer navigate their risk-management options.
1) Understanding how high-risk women make decisions about their health care and how that impacts their risk-management choices.
2) Whether African American women and white women differ in their access to information and interactions that support their health care decisions.
Having complete information about possible risk-reducing options allows people to make more informed choices and may impact health outcomes. Understanding differences in access to information can help develop better ways to overcome these disparities.
Researchers concluded that decision making occurred in 3 chronological steps:
1) Personal perception of breast cancer risk and prevention.
2) General information about managing breast cancer risk.
3) Specific information about risk-management options.
If you have a family history or a personal history of breast cancer, you may want to consider genetic testing. A genetic counselor or other genetics expert can help you determine whether genetic testing is right for you. Knowing your particular breast cancer risk is important information to have in making choices about preventive measures.
If you are at high risk for breast cancer, consider talking to a specialist (genetic counselor, breast oncologist, nurse navigator) who can provide information specific to your situation. A range of options are available, including enhanced surveillance, risk-reducing surgeries, and chemoprevention. Ask your health care providers what preventive options are available to you and which might best fit your circumstances.
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The National Comprehensive Cancer Network is a consortium of experts in cancer and genetics. They publish consensus guidelines for genetic testing for inherited mutations that increase cancer risk. Their guidelines for genetic testing for people diagnosed with breast cancer include:
For people with HER2-negative, metastatic breast cancer, NCCN recommends BRCA testing before starting on chemotherapy to see if there may be benefit from treatment with a PARP inhibitor.
According to NCCN, cancer risk assessment and genetic counseling is highly recommended before genetic testing is offered (pre-test counseling) and after results are disclosed (post-test counseling). A genetic counselor, medical geneticist, oncologist, surgeon, oncology nurse, or other health professional with expertise and experience in cancer genetics should be involved early in the counseling of patients.
The Daughter Sister Mother Project (The Ohio State University) seeks Latina and Asian American women at high risk for breast cancer for a study.
The Columbus Dispatch
American Journal of Managed Care
Breast cancer diagnosis rates are similar among African American and white women in the U.S. However, African Americans are more likely to be diagnosed with more advanced or more aggressive cancers. Despite similar diagnosis rates, breast cancer mortality in this study was 41% higher among African American women than among white women (29.2 deaths per 100,000 among black women vs 20.6 deaths per 100,000 among white women).
Women are defined as having high risk of breast cancer because of age, family history and/or a known genetic mutation. Some reports indicate that African American and white women have similar rates of mutations in breast cancer genes (John, et al. 2007 and Kurian 2010) while others indicate that there may be slightly more BRCA mutations among African American women. These rates do not account for all of the differences in mortality.
Women at higher risk for breast cancer have several possible preventive options. From least aggressive to most aggressive, these are:
While it is not a preventive option, genetic testing can greatly inform preventive choices. Women who have mutations in breast cancer-related genes are at greater risk of breast cancer, as well as ovarian and other cancers.
Choosing or rejecting these preventive options requires that healthy women are aware of them. Women need sufficient information about the pros and cons of each option and understand their personal risk to make informed decisions. Confidence in that information, interactions with health care providers, social support and financial capacity all factor into these decisions (Padamsee, et al, 2017). Women must first have a general base of information about breast cancer risk, and perceive it and prevention as important issues if they are to be motivated to pursue more specific information.
Racial differences in uptake and knowledge of risk-reducing options have been observed. Multiple studies have shown that African American women are less likely to participate in genetic counseling and testing than white women; they are also less likely to know about risk factors for breast cancer.
1) how high-risk African American women make decisions about their health care and how that impacts their risk management choices.
2) whether African American women differ from white women in their access to information and interactions that support their health care decisions.
50 undiagnosed women (20 African American women and 30 white women) with a known increased risk of breast cancer were recruited from clinics at Ohio State University.
Researchers interviewed participants about their experiences with cancer risk, risk-management behavior, and their decision-making process. Interviews were transcribed and analyzed for theme by at least two analysts. Participants were asked questions in reverse chronological order: initially about their risk management decisions and then about prior issues or factors that contributed to their decisions.
1. Personal perception of breast cancer risk and prevention.
2. General information about managing breast cancer risk.
3. Specific information about risk management options.
Note: Researchers used data collection methods that started by asking women questions in a reverse chronological order: initially about their risk management decisions, then about prior specific issues or factors that contributed to their decisions, and then about general perceptions about breast cancer and risk. For clarity, issues are presented here in the chronological order experienced by the participants.
General information gathering:
Gathering general information is necessary step in understanding risk and risk-management choices. A general understanding of cancer risk and prevention needs to occur before an individual can fully appreciate her specific risk information or preventive options.
In this study:
Participants’ comments highlight the lack of referrals to a specialist:
Elise (white, 22)
“ [The genetic counsellor] went through my whole family history with me…and then she explained to me how the BRCA1 gene works and my chances of inheriting it…And then she told me that if I have inherited it the chances of me developing breast cancer and its link to ovarian cancer…about when I would get tested for the gene and if I should get tested and how I felt about it…[We discussed] my concerns about getting tested…about how knowing that information or not knowing could influence the rest of my life…The [breast oncologist then] talked to me a little bit more about the chances of developing [breast cancer]...I have much more peace now that I’m on [the facility’s] radar as a patient…and they see me every year.”
Tanya (African American, 53)
"I’ve had the same family doctor since I was 19, love him—and he said, ‘You know, looking at the family history, let’s just start screening everything here [breast, cervical, and ovarian cancer screening]’ And once a year, we just screen. [Because] my doctor knows, he knows I’m afraid of cancer.”
The study stated: "Although Tanya’s primary doctor focused his attention solely on routine screening and did not offer her information (providing it only when she made specific requests), she described her relationship with him as positive, although he did not offer her information, but provided it only when she made specific requests."
Jojo (African American, 25) asked her OB/GYN if she should be tested for BRCA mutations and was told, “The only people who ever come back positive for that test are Jewish ladies.” This is inaccurate. BRCA mutations are found among all racial groups.
Barberette (White, 58) "intensely feared” ovarian cancer and asked repeatedly to have her ovaries removed, even when she was mostly through menopause and about to go under anesthesia for her hysterectomy, but her OB/GYN steadfastly refused to take out ‘healthy ovaries.’”
Access to information greatly affected women's perceptions of their risk and choices
The number of different information sources correlated with participants knowledge about risk-reducing options. Women who were aware of all or most options obtained that information from health care providers or friends and family. Those who were aware of fewer options used online resources, magazines and their primary care physicians. Three African American participants were unaware of their key prevention choices, even though their primary care physicians were their main source of information.
General perceptions of breast cancer risk and prevention options differed by race.
When asked whether it is possible to alter one’s cancer risk:
Monica (African American, 32)
"Cancer in general has always been a worry, a concern, of mine…so many people are being diagnosed with every type of cancer at this point…cancer in general is just common."
Specific information gathering is the second step in the decision-making process.
To decide whether or not to pursue a preventive option, a woman needs to know her risk and understand available interventions. Genetic testing is commonly the first step in the process; it greatly clarifies a person's risk of breast cancer. Woman who have a genetic mutation in a breast cancer gene have significantly higher lifetime risk of breast cancer than the general population, and therefore preventive options can have a greater impact.
Kea (African American, 34):
"It’s something I think I might do. I guess I would have to have a conversation…what does [the genetic result] mean and does it need to be done right away or can I try and pop out one kid first?…The alternatives [cancer] seem a lot worse and much scarier and you can always adopt kids…."
Risk-reducing decisions: the final step
Information access is more complex than previously understood. Disparities exist in information access for African American women at every step of the information-gathering process. This is a prime area for intervention to decrease barriers to decision making and subsequent care.
The concept of generalized versus specific risk perception from this study is a new framework for research. Researchers noted that information access and provider access were intertwined and may systematically disadvantage African American women.
African American women in this study reported a need to prioritize other health problems. The authors state:
"Coping with one or more present health conditions reasonably pushes thinking about cancer risk down a woman’s personal priority list. Time, attention, and money are finite, and the need to invest these resources in current or chronic health problems reduces their availability for addressing possible future threats to health. The fact that our African American participants faced more current health problems and devoted fewer resources to risk-management decision making is consistent with racial disparities found in all major illness categories in the USA.”
As in previous studies, primary care physicians described here were relatively unlikely to educate patients about the individual risk or specific prevention options due to lack of knowledge, time, or confidence (Sabatino et al., 2007 and Tan et al., 2013). Specific knowledge was generally conveyed by health care specialists. Lack of access to these specialists clearly impacted decision making in African American women.
The researchers of this study suggest improving initial and continuing education of primary care providers about familial risk, risk-management information, appropriate referral plans, racially-specific risk information and about racial disparities issues in breast cancer care.
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