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Study: Surgeon attitude impacts rate of genetic testing after a breast cancer diagnosis

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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:

Breast cancer survivors

ER/PR +

Her2+ breast cancer

Men with breast cancer

Previvors

Triple negative breast cancer

Women under 45

Women over 45

Newly diagnosed

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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 see greater patient volumes (50 or more cases per year) were more likely to recommend genetic testing.
       
  • 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.

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.

Share your thoughts on this XRAYS article by taking our brief survey.

Posted 10/6/18

Expert Guidelines Expert Guidelines

The National Comprehensive Cancer Network has guidelines on who should undergo genetic counseling and testing. If you have been diagnosed with breast cancer, you should speak with a genetics expert about genetic testing if any of the following apply to you:     

  • You have a blood relative who has tested positive for an inherited mutation 
  • 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 
    • breast cancer 
    • Testing of your tumor shows a mutation in a gene that is associated with
    • breast cancer and high risk for recurrence
    • Lobular breast cancer and a family history of diffuse gastric cancer

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 
    • cancer at age 55 or younger or prostate cancer 

The American Society of Breast Cancer Surgeons (ASBrS) released guidelines in 2019 that recommend 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: 11/22/2021

Questions to Ask Questions to Ask Your Doctor

  • Am I at increased risk for carrying an inherited mutation 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?

 

Open Clinical Trials Open Clinical Trials

Below are clinical trials that include genetic counseling and testing.

Other genetic counseling or testing studies may be found here.

 

Updated: 12/05/2021

Open Clinical Trials Open Clinical Trials

The following clinical research studies focus on addressing health disparities in cancer. 

Updated: 03/16/2022

Peer Support Peer Support

The following organizations offer peer support services for people with, or at high risk for breast cancer:

Updated: 02/25/2022

Find Experts Find Experts

Health care providers who are specially trained in genetics can help you more clearly understand your risk for . The following resources can help you locate a genetics expert in your area.

  • The National Society of Genetic Counselor website offers a searchable directory for finding a genetic counselor by state and specialty. To find a genetic counselor who specializes in cancer genetics, choose "cancer" under the options "Area of Practice/Specialization." 
  • 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. 
  • JScreen is a national program based out of 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. 
  • FORCE's toll-free helpline at: 866-288-RISK, ext. 704 will connect you with a volunteer board-certified genetic counselor who can answer general questions about genetic testing and cancer and help you find a genetics expert near you. 
  • FORCE Peer Navigator Program will match you with a volunteer who has undergone genetic counseling and can help you navigate resources to find a genetic counselor near you.
  • Ask your doctor for a referral to a genetics expert. 

Updated: 03/16/2022

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

Health Day

Surgeons make the call on gene tests for breast cancer patients This article rates 2.5 out of 5 stars

How we rated the media

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