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Creating More Resources for High-Risk Women Undergoing Breast Cancer Screening

March 16, 2013

Women at high risk for breast cancer are not receiving the information, access to care, or support they need to address their elevated cancer risk. Despite guidelines on risk assessment and management, many women are not accurately informed about their high-risk status or the risk-management options required to make informed health care decisions. Some high-risk women report that uninformed health care providers or insurance companies deny them access to standard-of-care screening services. Other women express frustration in getting the peer support and encouragement they need as they undergo increased breast surveillance.

FORCE is committed to addressing these issues. We have started by creating a survey for women undergoing breast surveillance to document and measure the extent of the information and resource gaps.  We have already identified some of the gaps in care and support for these women including:

  • Inadequate breast cancer risk assessment
    Guidelines for breast cancer screening are based on certain risk factors, and not all breast cancer risk is created equal. Unfortunately, many women who want to know their risk for breast cancer do not receive credible, up-to-date information about their risk and standard-of-care risk-management recommendations. This is in part a result of more people receiving genetic testing without full genetic counseling from genetics experts. (Visit our finding health care section of the FORCE website to locate a genetics expert.) Providers who are not trained in cancer genetics may run a BRCA test but fail to recognize other hereditary syndromes and cancer risk factors that might be causing cancer in a family. This can lead to some women with a family history of cancer incorrectly believing their risk for breast cancer is not elevated. Accurately identifying women at high risk for breast cancer is essential because these women benefit from increased breast screening and other risk-management options. FORCE will continue to encourage women concerned about their breast cancer risk to seek out qualified health care experts with advanced training in cancer genetics and risk assessment.
  • Incorrect information about high-risk screening and risk-management options
    National expert (NCCN) guidelines recommend annual MRI, mammogram, and clinical breast exam beginning at age 25 (or younger in some cases) for women at very high risk for breast cancer, including women with BRCA mutations or other inherited gene mutations. These guidelines are updated annually. The American Cancer Society also recommends annual breast MRI and mammogram for women with an intermediate risk for breast cancer of 20% lifetime risk or higher. For some high-risk women, additional recommendations include discussion of medications or surgery to lower risk. Despite this, almost daily we hear from high-risk women who have not been advised of all their risk-management options. It is critical for us to assure that women who are at high risk for breast cancer receive credible information about standard-of-care guidelines for breast cancer screening and options for lowering their breast cancer risk.
  • Inadequate insurance coverage for breast screening
    Most, but not all insurance companies cover increased breast screening for women who are at high risk for breast cancer. Still, screening can be expensive, and the out-of-pocket expense from copays and deductibles can be high. Many high risk women are uninsured or underinsured. Although there are some resources that provide financial assistance for mammograms and MRI, not all high-risk women have equal access to these financial services. FORCE’s has compiled resources that provide financial assistance for breast screening on our website page on Insurance, Financial Assistance, Cost of Services. We will continue to add more resources and advocate for programs to assist all high-risk women gaining access to these services.
  • Inadequate emotional support for high-risk women undergoing breast screening and awareness of non-surgical risk-management options
    FORCE receives feedback from women undergoing high-risk surveillance who report feeling anxious, isolated, or dismissed. Some express frustration that media coverage on high-risk women focuses mainly on prophylactic surgery, ignoring other risk-management options and leaving gaps in public awareness of these options. (You can read my recent blog on this topic). Many express a desire to connect with other high-risk women undergoing surveillance.

We invite high-risk women who have not undergone bilateral mastectomy to take our survey and join our mailing list. Over the next several months, FORCE will continue to address these issues by developing publications and other educational materials on standard-of-care guidelines for breast screening. We encourage our community to share these publications with mammography centers, health care providers, and family members in order to educate them about the need for increased breast surveillance in high-risk women. We will post articles and communications for our community to read and share so that we can raise awareness about high-risk screening.  Our website section on research lists screening and prevention studies. We will highlight research opportunities looking at new screening modalities and medications or lifestyle interventions aimed at lowering breast cancer risk. And we will build a support network, one volunteer at a time, of women undergoing breast screening who are interested in supporting others like themselves. Together, we can address these issue for this important segment of our community.

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3 Comments

  1. Linda says:

    Thank you FORCE for bringing additional attention and resources, now and going forward into the future, to the issues faced by high-risk women who have not had mastectomies but are instead undergoing enhanced surveillance. The next national FORCE conference would be another great venue for reaching out and emphasizing these issues.

  2. acw says:

    Thank you Sue and FORCE, I think all of us want better options, and want to be supported in the decision making process and feel supported in the decisions we then ultimately make. Over the years since being diagnosed with brca it seems there are still providers of care without adequate knowledge of how to advise/recognized/handle patients with this very difficult situation. It is a case of the cart before the horse, we have the ability to diagnose the patterns/mutations but still don’t have optimum choices beyond surgery. We have to have the courage not only to live with the knowledge once we receive it, but to find providers who have the knowledge to deal with our situations, but for those of us in areas that are rural, support groups for high risk men/women are virtually nonexistant. Its a shame. FORCE has given me support over the years with days that were so anxiety ridden.

  3. Reblogged this on I'm A Previvor and commented:
    Upon receiving my positive results for BRCA2 I was told that FORCE, Facing Our Risk of Cancer Empowered, was a resourceful organization to follow, find research and get support. Here is a recent post from their blog, Thoughts from FORCE, about finding the right information as a “high risk” individual.

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