XRAYS - Making Sense of Cancer Headlines

FORCE’s eXamining the Relevance of Articles for Young Survivors (XRAYS) program is a reliable resource for breast cancer research-related news and information. XRAYS reviews new breast cancer research, provides plain-language summaries, and rates how the media covered the topic. XRAYS is funded by the CDC.

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Genetic Testing

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STUDY: Survival and mutation status in breast cancer patients under age 40

Studies have found conflicting rates of survival for BRCA mutation carriers who develop breast cancer, reporting better, worse and similar outcomes compared to patients with sporadic breast cancer. New results of the large Prospective Outcomes in Sporadic versus Hereditary (POSH) breast cancer study found no difference in survival rates between the two groups. The study also concluded that among young triple-negative breast cancer patients during the first 2 years after diagnosis, BRCA mutation carriers had an initial survival advantage compared to women without a BRCA mutation. (02/15/18)

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STUDY: Genetic counseling by phone or face-to-face

Results presented at the 2017 American Psychological Association’s annual meeting showed genetic counseling by telephone is as “safe and effective” in long-term psychological and social outcomes compared to traditional in-person counseling for women at risk for hereditary breast and ovarian cancer. This presentation is an update on research published in 2014. (11/29/17)

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STUDY: Does expanded genetic testing benefit Jewish women diagnosed with breast cancer?

Carrying a BRCA gene mutation increases the risk of cancer in both women and men. Such information is valuable for people diagnosed with cancer and can affect medical decisions for both the patient and his or her family members. Approximately 2% of people of Ashkenazi Jewish (Eastern European) descent carry one of three common BRCA gene mutations. For Ashkenazi Jewish women diagnosed with breast cancer who do not carry one of the three common BRCA mutations, little is known about their chance of carrying another hereditary mutation that may increase risk. This study looked at how often Ashkenazi Jewish women diagnosed with breast cancer were found to carry mutations other than the three common BRCA gene mutations found among individuals of Ashkenazi Jewish descent. (09/13/17)

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STUDY: Gaps in genetic testing and decision-making for women with early-stage breast cancer

Genetic testing for cancer risk is now more affordable and easier to obtain. As a result, many breast cancer patients are tested without ever seeing a genetic counselor. Genetic testing results affect treatment decision making, but they can be confusing, especially if patients do not receive genetic counseling. This study looks at breast cancer patients’ experiences following genetic testing and how testing results affect surgical decision making. (7/14/17)

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STUDY: Patient experiences with genetic testing

Patients can now find out if they have a mutation in more than 20 different genes that are associated with cancer risk, thanks to research advances and the decreasing cost of genetic testing. However, patients’ experiences and use of genetic counseling and testing with these changes are unknown. Do patients want genetic testing? Are they getting tested? (3/7/17)

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STUDY: Angelina Jolie spoke out on BRCA testing: Did genetic testing increase?

Angelina Jolie published an editorial in the New York Times in 2013 about her choice to have a double mastectomy after finding out she was positive for a BRCA1 mutation. Researchers from a recent study claim that her celebrity endorsement of BRCA testing may have missed its target audience (previvors), due to the increase in BRCA testing following publication of the editorial but a decrease in the number of mastectomies performed. However, the study failed to take into account that many women without breast cancer do not pursue mastectomy in the months following genetic testing. (1/4/17)

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ARTICLE: Genetic testing has become more affordable and available. Should you get it?

What are reasons to get or not get genetic testing? Cynthia Graber gives her thoughts on the matter in her Wired opinion piece, "Why I Won't Get the Genetic Test for Breast Cancer." (11/15/16)

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ARTICLE: A cancer patient’s tumor is genetically profiled—how does that info help her treatment?

Jessica Wapner's Scientific American article explores the difficulties of making the vast amount of information acquired from tumor gene tests useful to patients and physicians. (9/20/16).

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STUDY: NIH awards $12 million grant to better understand breast cancer genetics in black women

Black women are more likely to develop aggressive breast cancers, and are more likely to die from their breast cancers. The reason for this is unclear. The National Cancer Institute has awarded a grant of approximately $12 million so that the biology of breast cancer in black breast cancer patients can be better understood. The results of this study will not be available to the public for several years, but the announcement brings much needed attention to this disparity. (8/15/16)

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STUDY: Racial disparities in BRCA testing: Why?

Black women receive BRCA testing less frequently than white women. Why is that? Researchers thought the reason might be that black and white women see different health care providers. However, new research suggests that disparities in physician recommendations for testing are the cause: black women with breast cancer were less likely to receive physician recommendations for BRCA testing than white women with breast cancer. There is a need to ensure equity in physician testing recommendations for black women. (7/21/16)

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STUDY: Genetic testing for cancer risk: How many genes to sequence?

The past four years has seen a revolution in genetic testing for increased cancer risk. As the cost of genetic testing falls, patients can choose to have a single gene or a dozen or more sequenced. But many questions remain: Which genes should you search? How many should be sequenced? What tests are appropriate for which patients? A recent study that looked at sequencing 180 different genes found that increasing the number of genes sequenced beyond those known to elevate breast and ovarian cancer risk increases the number of uncertain results and does little to change clinical management. (06/14/16)

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STUDY: Institute of Medicine report on state of ovarian cancer research and patient care underscores the need to know if you are at high risk for ovarian cancer

Young women with breast cancer meet national guidelines for genetic counseling and/or testing to determine if they have a mutation in BRCA and other genes that puts them at high risk for ovarian cancer. Recently, the Institute of Medicine brought together a committee of experts to evaluate the state of ovarian cancer research and care, because many things are still unknown about this disease. The committee published 11 recommendations to improve ovarian cancer risk prediction, prevention, early detection and care. (5/10/16)

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ARTICLE: New York Times report demonstrates need for genetic counseling, but doesn’t give the whole story

A recent New York Times report discussed how genetic testing could provide “grim data” without guidance for patients. While this is a valid concern, this report does not sufficiently emphasize certain important issues regarding genetic testing, particularly the need for genetic counseling by a health care provider with expertise in genetics before and after genetic testing. (4/5/16)

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STUDY: BRCA testing in young women with breast cancer

National guidelines recommend genetic testing for BRCA mutations in young women who are diagnosed with breast cancer. However, little is known about how women decide to get testing, or how they use genetic information to decide on treatment options. This study found that genetic testing is increasing among young breast cancer survivors, and it explores some of the factors that play into patients’ decision making about genetic testing. (3/22/16)

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STUDY: What are the genetics underlying 12 different cancer types?

As gene sequencing has become more affordable, researchers and health care providers are now looking for mutations in many genes beyond BRCA1, BRCA2 and others that are associated with known hereditary cancer syndromes. By sequencing thousands of genes rather than just one or two, researchers can better understand which inherited mutations affect cancer risk. In this study, researchers sequenced thousands of genes in patients with one of 12 cancers, including breast, and catalogued which gene mutations are most commonly found in each cancer.

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STUDY: Are mutations in BRIP1, BARD1, PALB2, and NBN associated with an increased risk for ovarian cancer?

Many women who meet national guidelines for genetic testing for BRCA mutations find that they do not carry a mutation in BRCA1 or BRCA2 despite their personal and family history of breast and/or ovarian cancer. Expanded panel tests now look for mutations in other genes associated with increased cancer risk. However, the extent of cancer risk for people with mutations in some of these other genes is not yet known. This study examines whether mutations in four genes found on many commercially available panels, BRIP1, BARD1, PALB2, and NBN, are associated with an increased risk for ovarian cancer. The researchers estimate that BRIP1 mutation carriers have about a 6% risk of developing ovarian cancer by age 80.

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ARTICLE: What “The Truth About Cancer” got wrong about BRCA mutations and cancer

A recent web series and related articles contain dangerous misinformation about BRCA mutations and cancer. Everyone is born with two copies of both the BRCA1 and BRCA2 genes, which play essential roles in preventing cancer. Individuals born with a change or mutation in one of these genes have a higher lifetime risk of breast, ovarian, and other cancers than those without a mutation. Some claim that cancer in people with BRCA mutations can be controlled by 'turning the gene on and off.' This is false and misleading. BRCA mutation carriers are at risk of cancer because they lack a working copy of one of the genes involved in preventing cancer development. Turning a mutated BRCA gene on or off has no effect because once a mutation develops, the gene no longer works.

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STUDY: The cost-effectiveness of universal BRCA screening

As the cost of BRCA sequencing continues to fall, medical experts are considering the possibility of universal testing testing all women regardless of their breast and/or ovarian cancer history for BRCA mutations. In a recent JAMA Oncology article, researchers argue that the current cost of BRCA testing for all women in the United States is greater than the benefit gained in terms of cancers found and yearly life quality improved.

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STUDY: Impact of familial breast cancer risk on young girls

Does growing up in a family that is at high risk for breast cancer affect young girls? Recent research found girls from families with BRCA mutations and/or a strong family history of cancer to be as well adjusted as peers of the same age. The one difference was that girls from families facing breast cancer risk had more stress related to breast cancer than their peers. While these findings are reassuring, parents know their children best, and they should ask for help if they believe their daughters are not coping well.

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STUDY: Are more men with breast cancer opting for prophylactic mastectomy?

Recent headlines describe the rise in prophylactic double mastectomy for men with breast cancer. This week, we look at the research to see how many men are choosing this option and what it means for men with breast cancer.

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STUDY: BRCA mutations more common than expected in young black women with breast cancer

Most estimates of the percentage of breast cancer patients with mutations in BRCA are based on studies of non-Hispanic white women. Researchers have found that the prevalence of BRCA mutations in black women diagnosed at a young age with breast cancer is approximately double that of previously reported estimates in non-Hispanic white women with breast cancer diagnosed in similar age categories. This study underscores the need for health care providers to refer for genetic counseling and testing all black women diagnosed with invasive breast cancer at or before age 50.

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STUDY: Mutations found through multigene panel testing for cancer risk can change patient care

Multigene panel testing can look for mutations in many genes associated with increased cancer risk. Some panels include genes associated with increased risk of multiple cancers, including breast, ovarian, colon, and gastric cancers. This study demonstrates that multigene panel tests yield findings that can change the care for patients by uncovering cancers for which they are at increased risk.

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STUDY: Researchers study breast cancer patients’ experiences with genetic testing

Genetic testing is now more available and affordable than ever before. If you are a young breast cancer survivor, knowing if you have a mutation associated with increased cancer risk can affect your treatment options. This study highlights patient's experiences with genetic testing and shows the unmet needs of some populations.

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