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Special populations: Previvors or survivors who have had family with cancer
Women with inherited mutations in genes that increase breast and ovarian cancer risk have an additional challenge: coping with how those mutations impact their families and how a family member’s cancer experience can shape their own perception. In a recent U.S. News and World Report article, Elaine Howley explores how a woman's decisions about healthcare, cancer prevention and treatment are affected by experience with cancer in the family. (9/25/18)
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How experience with a family member's cancer can impact a relative’s personal decisions about cancer risk.
It can help us recognize that our relatives’ experiences with cancer can affect our future medical choices and health care decisions.
In her article in U.S. News and World Report, Elaine Howley explores how a woman's decisions about health care, cancer prevention and treatment are shaped by experience with cancer in the family.
We inherit genetic material from our families, including possible mutations. Some mutations have relatively (pun intended) straightforward effects, like those that determine hair color or height, but others, like those that increase cancer risk, have a more complicated impact.
Unlike genes affecting physical features or child development, adult cancer risk genes do not have an impact until we are teens or young adults. By that time, many women with a mutation in BRCA1, BRCA2 or other risk genes associated with cancer risk have already experienced family members who have been diagnosed with cancer. Like many difficult life events, these experiences with cancer can affect decision making about one's own cancer risk.
A recent study by Padamsee and colleagues at The Ohio State University found that women who were directly involved in the care of a loved one who died from cancer were much more likely to choose aggressive prevention options for themselves.
Howley interviewed Kristen Carpenter, clinical psychologist and director of Women’s Behavioral Health at the Ohio State University Wexner Medical Center, who stated:
“I think these aggressive preventive options that patients pursue are often a means of taking control of this thing....[some people] have real difficulty tolerating uncertainty – this notion that [cancer] might be right around the corner – and reducing that uncertainty by removing breast tissue, for instance, helps them move through their day-to-day life without a fear of cancer, or at least a greatly diminished fear of cancer.....reduction of risk, that ability to take control of something that caused a loved one to suffer is very empowering for some individuals.”
Women who have a mutation in a BRCA gene have a much greater likelihood of developing breast and ovarian cancer, (55-85% lifetime risk for breast cancer and 11-55% risk for ovarian cancer), than someone who does not have a mutation (breast: 13% lifetime risk, ovarian: 1.5% lifetime risk). Men with BRCA mutations also have an elevated lifetime risk of breast and prostate cancers, which can occur at earlier ages and can be more aggressive than prostate cancers among men who do not have a BRCA mutation. More information about BRCA cancer risks can be found on the FORCE website.
Several preventive approaches can reduce risk for BRCA1 and BRCA2 mutation carriers to differing degrees:
1. Enhanced surveillance
National Comprehensive Cancer Network guidelines suggest that enhanced surveillance for women with BRCA1 or BRCA2 mutations includes increased breast cancer surveillance by at 25, and annual MRI screening by age 30. For men with BRCA1 or BRCA2 mutations, NCCN guidelines recommend conducting proper breast self-exams and clinical exams by age 35, and prostate cancer screening by age 45.
2. Risk-reducing bilateral mastectomy (RRM)
In RRM, breast tissue is surgically removed from both breasts. RRM has been estimated to reduce an individual’s risk by 90-95% compared to the general population. Additional considerations for RRM include the risk of surgical complications, elimination of the ability to breastfeed and decisions about whether or not to have breast reconstruction.
3. Risk-reducing bilateral salpingo-oophorectomy (RRSO)
In RRSO, both ovaries and Fallopian tubes are removed surgically to reduce risk of ovarian cancer. Although absolute risk of ovarian cancer is lower than breast cancer risk, ovarian cancer is harder to detect early and treat successfully. Additional considerations of RRSO include the risk of surgical complications, impacts on childbearing and decisions about hormone replacement.
Tumors in women with BRCA1 or BRCA2 mutations are predominantly estrogen-receptor positive. In chemoprevention, women are treated with an estrogen receptor modulator (e.g., tamoxifen or raloxifene) to reduce the likelihood of breast or ovarian cancer.
Tasleem Padamsee and colleagues at Ohio State University found that the type of cancer in a family may alter people’s perception of personal risk and decision making. When family members had a less traumatic cancer experience, women generally preferred surveillance options. When family members had traumatic experiences, women made more aggressive choices, more often opting for surgery.
Women who had family members with breast or ovarian cancer had greater first-hand knowledge of the particular cancer type that they were facing. They tended to choose risk-reducing surgeries more readily. This may reflect reduced risk tolerance or an increased fear of facing experiences similar to their loved ones.
When a family member had a cancer other than breast or ovarian, women often perceived their own risk with more equanimity and were more likely to opt for increased surveillance over risk-reducing surgeries.
Ms. Howley’s article describes the experiences of Ally Durlester, a BRCA2 mutation carrier and daughter of breast cancer survivor Nikki Durlester, who wrote Beyond the Pink Moon: A Memoir of Legacy, Loss and Survival about her experience.
Diagnosed at 23, Ally Durlester wasn't ready for risk-reducing surgery and opted for active surveillance. However, by age 26, she chose to have a risk-reducing bilateral mastectomy:
"I was both mentally and physically prepared and in a good situation with work, and my parents were on board....I don’t want what happened to [my mom] to happen to me. I want to end the cycle in our family....It was the best decision of my life. I have peace of mind. I healed from that surgery and moved forward. I have never looked back.”
Increased information can be one of the side effects of having a family member with cancer. As psychologist Kristen Carpenter states:
Family members who have watched loved ones cope with cancer are better informed: they have a little better idea about what to expect....It changes the nature of the kinds of questions they ask and what they seek, so on one hand it’s an informational advantage.”
It is important to recognize that your choices are your own. No one else can make them for you.
Kristen Carpenter notes:
"Very often these feel like family decisions, but when it’s something this personal, close family members have their own opinions of what you ought to do. They can’t always separate the patient’s choices from the consequences for themselves.”
Despite family members’ experiences, yours may differ. It is important to make the choice that best fits you and your circumstances.
Discussing her cancer risk choices, Ally Durlester stated:
“Listen to your gut. Trust your instincts. Don’t be concerned about what others may think of your decision, and really just do what’s best for you...Each journey is so unique. Everyone handles things differently, and that’s OK. You ultimately need to do what’s best for you.”
Ms. Durlester's advises individuals to stay educated, ask lots of questions and to stay positive for this decision-making process.
A wide range of support beyond family and friends is available to previvors and survivors of breast and ovarian cancers. For many patients, health care providers are a primary support. Genetic counselors can provide information about mutation specific risk, prevention and treatment options. Mental health providers can be a source of emotional and psychological support for the decision-making process and stresses associated with treatment.
Advocacy and support groups like FORCE, Young Survivors Coalition, Living Beyond Breast Cancer, and Sharsheret can help provide perspectives from other previvors or survivors. In addition to message boards and informational materials, FORCE’s Peer Navigation Program matches new previvors or survivors with peers who have relevant experiences.
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FORCE Information: Talking with your family
FORCE Information: Talking with your family (additional information)
FORCE XRAYS: Breast cancer risk
FORCE XRAYS: Family and caregivers
FORCE XRAYS: Prevention
FORCE XRAYS: Risk management
Howley EK. "How a loved one’s experience with cancer guides breast cancer decisions." U.S. News and World Report. June 29, 2018.
Padamsee TJ, Willis CE, Yee LD, et al. "Decision making for breast cancer prevention among women at elevated risk." Breast Cancer Research. 19:34 (2017), doi:10.1186/s13058-017-0826-5
Padamsee TJ, Muraveva A, Yee LD, et al. "Experiencing the cancer of a loved one influences decision-making for breast cancer prevention." Journal of Health Psychology. Dec 1, 2017.
Durlester N. Beyond the Pink Moon: A Memoir of Legacy, Loss, and Survival. 2010. ISBN: 978-1453766422