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Researchers study breast cancer patients’ experiences with genetic testing


This research is relevant for:

Checked Breast cancer survivors

Checked Women under 45

Unhecked Women over 45

Unhecked Men with breast cancer

Checked Metastatic breast cancer

Checked Triple negative breast cancer

Unhecked Previvors

Unhecked BRCA mutation carriers

Checked ER/PR +

Checked Her2+ breast cancer

Checked Special populations: African American and Latina Women

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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.


STUDY AT A GLANCE

Why is this study important?

This study reveals more information about breast cancer patients’ experiences with genetic testing: 

  1. BRCA1/2 mutation status is important for patients and their physicians to know for proper patient care. 
  2. While the affordability and availability of genetic testing has increased, not all patients’ needs regarding genetic testing are being met. 

Key study findings:

  1. 35% of study participants wanted genetic testing, 28% had discussed genetic testing with a health care provider, and 19% had genetic testing.
  2. Groups that most wanted genetic testing were young women, Latinas and those with a family history of breast and/or ovarian cancer.
  3. Minority patients studied were more likely to need a discussion about genetic testing, but did not have that discussion with their health care provider.  

What does this mean for me?  

Talk to your health care provider, not only to inquire about and express a desire to have genetic testing, but also about any concerns or worries you have about genetic testing. 

Questions to ask your health care provider:

Is genetic testing right for me?
What are the implications of genetic testing?
What does it mean for my family and I if I have a BRCA mutation?

RESEARCH SUMMARY

Study background:

Because BRCA1/2 gene mutations increase the risk for breast cancer and for other cancers, it is important for you and your physicians to know if you carry a BRCA1/2 mutation.  Genetic testing is now more available and affordable. Because more people are aware of and/or have genetic testing, researchers are now studying the patient genetic testing experience.  This topic has been somewhat studied, but research including cancer patients has been small, with low participation rates and few minority patients.

Researchers of this study wanted to know:

Which patients desire and/or receive genetic testing? Do patients have the discussions they need with their health care provider about genetic testing? Do minorities have a different experience?

This study brings to light more information about breast cancer patients’ experiences with genetic testing.  

Population(s) used in the study:

1,500 women from Los Angeles and Detroit—17% were black and 39% were Latina—who were diagnosed with non-metastatic breast cancer

Study results: 

  • Among breast cancer patients, 35% wanted genetic testing, 28% discussed genetic testing with their health care provider, and 19% did receive genetic testing.
  • Almost half of the women who wanted genetic testing did not bring it up with their health care provider; only 19% of these patients actually had genetic testing.
  • The groups who most commonly desired getting genetic testing done were young women, Spanish-speaking Latinas and people with a family history of cancer.
  • The majority of Spanish-speaking Latinas were also worried that other family members may develop breast cancer in the future.
  • Health care providers did not meet the needs of minority patients who wanted to discuss genetic testing.
  • Women who received genetic testing were younger, more likely to have a family history of cancer, and were more likely to be white than black.

The study had limitations.  Because it included women from only two metropolitan areas (Los Angeles and Detroit), it did not reflect broad geographic results.  The study also relied on patient self-reporting, which always presents the risk of misinformation. 

Conclusion: Talking to your physician and asking questions about genetic testing is important.

This study identified groups that are more likely to receive genetic testing, including patients with a family history of cancer.  However, a small percentage of people with BRCA1/2 mutations do not have a family history of cancer.  If you are diagnosed with breast cancer before age 40, it is worthwhile to talk about genetic testing with a health care provider who is knowledgeable with genetics so that you can understand your options, clear up any misconceptions and alleviate your worries about testing.  Additionally, this study demonstrates that health care providers are not meeting the needs of minority patients who are interested in genetic testing.   Previous research has shown that black women, even those with a family history of cancer, were less likely to have genetic testing than white women with a similar history, so again, all questions should be addressed with a health care provider.

Study authors also noted that not all patients who want genetic testing will be likely to have a BRCA1/2 mutation.  But it is important that the physician clears up any worries that the patient might have in order to alleviate the patients’ concerns. 

References

Jagsi R, Griffith KA, Kurian AW, et al. “Concerns About Cancer Risk and Experiences With Genetic Testing in a Diverse Population of Patients With Breast Cancer.” Journal of Clinical Oncology, published ahead of print April 6, 2015.

posted 9/1/15

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