Southeastern Women on Medicare Rarely Have Genetic Testing After Being Diagnosed With Breast or Ovarian Cancer

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Only 8% of disabled or older women in the Southeastern United States who qualified for Medicare, had been diagnosed with breast or ovarian cancer, and met the criteria for BRCA1 and BRCA2 mutation testing had that testing done between 2000 and 2014, according to a study.

The research letter was published in the Aug. 14, 2018 issue of the journal JAMA. Read the abstract of BRCA1 and BRCA2 Testing in Medically Underserved Medicare Beneficiaries With Breast or Ovarian Cancer.”

Most inherited cases of breast cancer are associated with mutations in one of two genes: BRCA1 (BReast CAncer gene one) or BRCA2 (BReast CAncer gene two).

Women with a BRCA1 or BRCA2 genetic mutation:

  • have up to an 85% lifetime risk of developing breast cancer
  • have a much higher-than-average lifetime risk of ovarian cancer; estimates range from 15% to 60%

When is genetic testing recommended?

U.S. guidelines say that BRCA testing should be considered when:

  • many women in a family have been diagnosed with breast and/or ovarian cancer, particularly if the women were younger than 50 when diagnosed
  • some women in a family have been diagnosed with cancer in both breasts
  • there is both breast and ovarian cancer in a family
  • men in a family have been diagnosed with breast cancer
  • there is breast cancer in a family and either male relatives on the same side of the family have been diagnosed with prostate cancer at a young age or relatives on the same side of the family have been diagnosed with gastrointestinal cancers, such as pancreas, gallbladder, or stomach cancer
  • a family is of Ashkenazi (Eastern European) Jewish descent

When a woman knows she has a BRCA1 or BRCA2 mutation, she can then consider taking more aggressive steps, such as taking hormonal therapy medicine preventively or having preventive surgery to remove the breasts or ovaries to reduce her higher-than-average risk.

The women in the study were part of the Southern Community Cohort Study, a group of 84,513 people recruited from community health centers in 12 Southeastern states between 2002 and 2009:

  • 66% were black
  • 30% were white
  • 50% were covered by Medicare
  • 49,642 were women

The 12 southeastern states were Alabama, Arkansas, Florida, Georgia, Kentucky, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, Virginia, and West Virginia.

Of the women in the study, 2,002 were diagnosed with breast or ovarian cancer from 2000 to 2014; 751 of these women were covered by Medicare Part B when they were diagnosed. Unfortunately, 33 women died within 6 months of being diagnosed. These women were not included in the study; the analysis included the 718 women who were alive 6 months after diagnosis.

The characteristics of the 718 women:

  • 62% were black
  • 33% were white
  • 689 women were diagnosed with breast cancer
  • 30 were diagnosed with ovarian cancer (one woman was diagnosed with both types of cancer)
  • average age when diagnosed with breast cancer was 64
  • average age when diagnosed with ovarian cancer was 62.5
  • 62% of the women had an annual income of less than $15,000
  • 30% of the women had not graduated from high school

Only 8 out of 92 eligible women had genetic testing

Overall, 92 women met the criteria for BRCA1/BRCA2 testing, but only 8 women were tested during about 5 years of follow-up.

None of the states had a testing rate higher than 25%, and five states -- Arkansas, Louisiana, Tennessee, Virginia, and West Virginia -- had a testing rate of zero.

When the researchers reviewed the women’s medical records, they found that fewer than 10% of the doctors documented a need for genetic testing services, and none of the records said a woman had been referred for genetic counseling.

"Women who carry one of these mutations but don't know their mutation status are not able to take advantage of preventive or early detection interventions that we have available, so they miss out on the opportunity to reduce their risk for these cancers and potentially reduce their overall mortality," said Amy Gross, Ph.D., an epidemiologist with the Vanderbilt Institute for Clinical and Translational Research and lead author of the study. "They are also not able to inform family members who might be affected.

"We were surprised at how low the test rate was although we didn't expect it to be very high," she continued. "This testing rate is lower than what I have seen reported in terms of any other study with the same time and eligibility constraints."

The researchers said the reasons for the low testing rate could be due to several factors, including lack of patient interest and physician recommendations.

Steps women with a genetic mutation can take to lower their risk

These results suggest that many high-risk women who should have genetic testing aren't having that screening done. This is troubling. Women with a genetic mutation linked to breast and ovarian cancer have a number of options to reduce their cancer risk, as well as the risk of breast cancer coming back (recurrence). These risk reduction steps include:

  • a more aggressive screening plan starting at an earlier age
  • hormonal therapy to block the effect of estrogen on breast tissue or reduce the amount of estrogen in the body
  • removing the healthy breasts (prophylactic mastectomy)
  • removing the healthy ovaries (prophylactic oophorectomy)

Knowing that a woman has an abnormal BRCA1 or BRCA2 gene also is important information for the other women and men in her immediate family to have; they also may be carriers and at a higher risk of cancer.

Whether or not you’ve been diagnosed with breast cancer, if you meet the criteria for genetic testing for a mutation linked to breast cancer, it makes sense to ask your doctor if genetic testing or a referral to a genetic counselor is a good idea for you.

For more information, visit the Breastcancer.org Genetic Testing pages.

If you've tested positive for a genetic mutation and would like to discuss how this affects your risk with others, join the Breastcancer.org Discussion Board forum Positive Genetic Test Results.


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