Study: Surgeon attitude impacts rate of genetic testing after a breast cancer diagnosis
Contents
At a glance | In-depth |
Findings | Limitations |
Guidelines | Resources |
Questions for your doctor |
STUDY AT A GLANCE
This study is about:
How surgeons’ attitudes impact genetic testing in women with breast cancer.
Why is this study important?
This study is important because knowledge of a mutation in a gene that increases cancer risk may alter treatment and risk reduction decisions for a woman and her family members.
Study findings:
Of 3,910 women with breast cancer in this study:
- 34% met national standard-of-care guidelines (NCCN) for genetic testing.
- 27% had genetic testing.
Researchers surveyed attending surgeons to determine what impacted genetic testing rates in various hypothetical clinical scenarios.
- About one-third of the variation in genetic testing recommendations is due to surgeon attitude and patient volume.
- A surgeon’s attitude most impacted genetic testing rates. Some surgeons’ recommendations differ from national guidelines.
- Surgeons with larger patient volumes were more likely to recommend genetic testing.
- Socioeconomic status and insurance coverage had a small impact, but this did not track with surgeons’ recommendations.
- Patients with no insurance or public insurance were less likely to get genetic testing.
- Genetic testing rates differed by ethnicity:
- Black women were 51% less likely to have genetic testing than white women.
- Latina women were 16% less likely to have genetic testing than white women.
- Asian women were as likely to have genetic testing as white women.
What does this mean for me?
Surgeons’ attitudes about genetic testing may affect their recommendations for you. You may consider getting a second opinion about whether genetic testing might be helpful given your family history and breast tumor characteristics. It may be useful to ask if you can consult with a genetic counselor about your risk of carrying a gene mutation associated with hereditary breast cancer.
Surgeons who treat more than 50 patients per year are more likely to recommend genetic testing when appropriate. You may want to ask how many breast cancer patients your surgeon treats annually.
Posted 10/6/18
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References
Katz SJ, Bondarenko I, Ward KC, et al., "Association of Attending Surgeon with Variation in the Receipt of Genetic Testing After Diagnosis of Breast Cancer." JAMA Surgery. 2018. doi: 10.1001/jamasurg.2018.2001.
Disclosure
FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board prior to publication to assure scientific integrity.
This article is relevant for:
Young women diagnosed with breast cancer who have not yet had genetic testing
This article is also relevant for:
people with breast cancer
people with ER/PR + cancer
people with Her2-positive cancer
men with breast cancer
previvors
people with triple negative breast cancer
people newly diagnosed with cancer
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IN-DEPTH REVIEW OF RESEARCH
Study background:
Surgeons guide clinical management of their patients‘ treatment. Genetic testing can inform those decisions. Almost all patients see a surgeon after diagnosis, but only about one-third of eligible patients have genetic testing. Current National Comprehensive Cancer Network (NCCN) guidelines recommend genetic testing for women diagnosed with breast cancer who have risk of carrying a pathogenic mutation in a breast cancer gene based on family history and her own tumor characteristic.
Variability in surgeons’ attitudes about genetic testing are documented. The researchers for this study wanted to know how surgeons’ recommendations differed when faced with patients with similar clinical indications. If variability in genetic testing is due to surgeons rather than clinical findings, it suggests greater efforts be made to educate surgeons about genetic testing or to encourage patients to get a second opinion.
Researchers of this study wanted to know:
How surgeons impact genetic testing in women with breast cancer.
Populations looked at in this study:
Participants were 5,080 women from the iCanCare study ages 20 to 79. Each woman was diagnosed with either ductal carcinoma in situ () or invasive cancer ( 0 to II) between July 1, 2013 and August 31, 2015 that was reported to registries in Georgia or Los Angeles County, California.
98% of patients identified their attending surgeon. Of these, 377 of 488 attending surgeons responded to a survey about their likelihood to order genetic testing or genetic counseling in different hypothetical clinical scenarios. These surgeons treated 3,910 patient-participants.
Study findings:
Of 3,910 women with breast cancer in this study:
- 34% (1,350 of 3,910 women) had elevated risk of having a breast cancer gene mutation as determined by NCCN guidelines (i.e.,these women are candidates for genetic testing based on personal and family history).
- 27% (1,056 of 3,910 women) had genetic testing.
Researchers surveyed the attending surgeons to determine what factors impacted genetic testing rates in various hypothetical clinical scenarios. In these scenarios, elevated risk was based on NCCN testing guidelines:
- 20% of variation in genetic testing recommendations reflects variation in pretest genetic risk among the patients.
- About one-third of the variation in genetic testing recommendations is due to surgeon attitude and patient volume.
- Surgeons’ attitudes most impacted genetic testing rates. Some surgeon's recommendations differ from national guidelines.
- Surgeons who were most likely to recommend genetic testing (top 5%) recommended testing for 72% of patients with an elevated chance of carrying a mutation.
- Surgeons who were least likely to recommend testing (bottom 5%) recommended testing for 26% of patients with an elevated chance of carrying a mutation.
- Surgeons who were most likely to recommend genetic testing (top 5%) recommended testing for 72% of patients with an elevated chance of carrying a mutation.
- Surgeons who see greater patient volumes (50 or more cases per year) were more likely to recommend genetic testing.
- Surgeons’ attitudes most impacted genetic testing rates. Some surgeon's recommendations differ from national guidelines.
- Socioeconomic status and insurance coverage impacted genetic testing but did not track with surgeon's recommendation.
- Patients with no insurance or public insurance were less likely to get genetic testing.
- Genetic testing rates differed by ethnicity:
- Black women were 51% less likely to have genetic testing than white women.
- Latina women were 16% less likely to have genetic testing than white women.
- Asian women were as likely to have genetic testing as white women.
- Black women were 51% less likely to have genetic testing than white women.
- Patients with no insurance or public insurance were less likely to get genetic testing.
Limitations:
Because participating women with breast cancer were identified from registries, some information about their family history may not be available. Given the data available, it was not possible to directly determine whether attending surgeons recommended genetic testing for women who were later shown to have mutations and did not recommend genetic testing for women who were later shown to not have mutations. Some women and some surgeons did not participate in the surveys and that may have skewed the data. The study was based on participants in Georgia and California only; nationwide results may vary.
Conclusions:
Recommendations for genetic testing after a breast cancer diagnosis can be strongly impacted by surgeon attitudes. The results of this study suggest that patients should be aware that some surgeons’ recommendations may differ from national guidelines and vary given similar situations. These results suggest greater efforts be made to educate surgeons about genetic testing and to encourage patients to get a second opinion. It also highlights the need for greater consensus among surgeons about genetic testing and genetic counseling needs.
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Posted 10/6/18
National Comprehensive Cancer Network guidelines regarding who should undergo genetic counseling and testing recommend speaking with a genetics expert about genetic testing if you have been diagnosed with breast cancer and any of the following apply to you:
- You have a blood relative who has tested positive for an
- You have any of the following:
- Breast cancer at age 50 or younger.
- Male breast cancer at any age.
- Ovarian cancer at any age.
- at any age.
- Two separate breast cancer diagnoses.
- Eastern European Jewish ancestry and breast cancer at any age.
- Lobular breast cancer and a family history of diffuse gastric cancer.
- breast cancer and are at high-risk for recurrence.
- Tumor testing shows a mutation in a gene that is associated with .
OR
- You have one or more close family members who have had:
- Young-onset or rare cancers.
- Breast cancer at age 50 or younger.
- .
- Male breast cancer, ovarian cancer, pancreatic cancer or cancer at any age.
- Two separate cancer diagnoses.
- prostate cancer or cancer that is high-risk or very-high-risk.
The American Society of Breast Cancer Surgeons (ASBrS) released guidelines in 2019 recommending that all women diagnosed with breast cancer have access to genetic testing for inherited mutations in breast cancer genes.
If you are uncertain whether you meet the guidelines above and you are interested in or considering genetic testing, you should speak with a cancer genetics expert.
Updated: 07/28/2023
- Am I at increased risk for carrying an in a gene linked to breast cancer?
- Should I consult with a genetic counselor?
- If I have a mutation in a breast cancer gene, how might that alter my treatment or risk-reduction recommendations?
The following clinical trials include genetic counseling and testing.
- NCT02620852: WISDOM Study: Women Informed to Screen Depending on Measures of Risk offers women ages 40-74 the opportunity to undergo risk assessment and genetic testing in order to determine the best breast screening options based on their situation.
- NCT05562778: Chatbot to maximize genetic risk assessment. Researchers are testing whether a mobile health platform, known as a "chatbot" can improve rates of genetic testing among Medicaid patients with an elevated risk having an .
- NCT05427240: eHealth Delivery Alternative for Cancer Genetic Testing for (eReach2). This study will look at the effectiveness of offering web-based options for pre/post-test genetic counseling to provide equal or improved timely uptake of genetic services and testing.
- NCT05694559: Connecting Black Families in Houston, Texas to Genetic Counseling, Genetic Testing, and Cascade Testing by Using a Simple Genetic Risk Screening Tool and Telegenetics. This study will provide genetic testing to 150 Black individuals and families and provide genetic counseling and risk reduction resources to individuals with a mutation linked to increased cancer risk.
Other genetic counseling or testing studies may be found here.
Updated: 02/29/2024
The following clinical research studies focus on addressing in cancer.
- NCT04854304: Abbreviate or FAST Breast for Supplemental Breast Cancer Screening for Black Women at Average Risk and Dense Breasts. This study looks at how effectively a FAST breast can successfully detect breast cancer in Black women with dense breasts.
- NCT03640208: Educate, Assess Risk and Overcoming Barriers to Colorectal Screening Among African Americans. This research studies a community-based intervention to educate and overcome barriers to screening among African Americans who are age 45 older with no personal or family history of colorectal cancer or inflammatory bowel disease.
- NCT04392050: A Community-Based Educational Intervention to Improve Colorectal Cancer Screening. This study looks at what makes it easy or difficult for underserved populations to have colorectal cancer screening with a focus on African American, Latinx and Asian people.
Updated: 10/16/2024
The following organizations offer peer support services for people with, or at high risk for breast cancer:
- FORCE peer support:
- Our Message Boards allow people to connect with others who share their situation. Once you register, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Connect online with our Private Facebook Group.
- Join our virtual and in-person support meetings.
- Other organizations that offer breast cancer support:
Updated: 05/07/2024
The following resources can help you locate a genetics expert near you or via telehealth.
Finding genetics experts
- The National Society of Genetic Counselors website has a search tool for finding a genetic counselor by specialty and location or via telehealth.
- InformedDNA is a network of board-certified genetic counselors providing this service by telephone. They can also help you find a qualified expert in your area for face-to-face genetic counseling if that is your preference.
- Gene-Screen is a third-party genetic counseling group that can help educate, support and order testing for patients and their families.
- JScreen is a national program from Emory University that provides low-cost at-home genetic counseling and testing with financial assistance available.
- Grey Genetics provides access to genetic counselors who offer genetic counseling by telephone.
- The Genetic Support Foundation offers genetic counseling with board-certified genetic counselors.
Related experts
Genetics clinics
- The American College of Medical Genetics website has a tool to find genetics clinics by location and specialty.
Other ways to find experts
- Register for the FORCE Message Boards and post on the Find a Specialist board to connect with other people who share your situation.
- The National Cancer Institute (NCI)-designated comprehensive cancer centers have genetic counselors who specialize in cancer.
- FORCE's toll-free helpline (866-288-RISK, ext. 704) will connect you with a volunteer board-certified genetic counselor who can help you find a genetics expert near you.
Updated: 07/21/2023
Who covered this study?
Reuter's Health (Physicians Weekly)
Breast cancer surgeons don't always order genetic testing for patients This article rates 4.0 out of 5 stars
Eureka Alert
Surgeons have substantial impact on genetic testing in breast cancer patients who need it This article rates 3.0 out of 5 stars
Health Day
Surgeons make the call on gene tests for breast cancer patients This article rates 2.5 out of 5 stars