Breast Health and Disability

Related Topics: Breast Self Exam / Mammography /  Breast Cancer

Maintaining breast health involves monitoring changes from what is normal for you, getting regular screening exams for breast cancer, and seeking the advice of a healthcare provider when you notice changes and think something might be wrong. Breast health includes looking for signs of breast cancer (lump, dent, or changes in texture), unusual discharge from the nipples, and complications after breast surgery, such as for breast reduction, augmentation, or implants. Women with physical disabilities often face barriers at every stage of maintaining breast health. These barriers are rooted in social factors that limit access to preventive health screening, inadequate health insurance, uninformed health care providers, and physical barriers to facilities and mammography equipment.

Disparities

Many studies have documented lower rates of breast cancer screening (mammography) among women with disabilities compared to women in general.  The disparity is even greater for minority disabled women and women with more severe functional limitations. There is evidence that women with disabilities tend to be diagnosed at later stages of tumor development. Once diagnosed, they are less likely to receive breast-conserving treatment.

Attitudes toward Breast Health

All too often, women are so concerned with managing their disabling condition that they have no energy left over to put toward maintaining their health as a woman. Healthcare providers, who are often specialists with a narrow focus on the disabling condition and not on general health maintenance, commonly reinforce this attitude.

There may be an assumption that “lightening doesn’t strike twice,” which means once you have a disability, you are protected from getting any other serious health problem like breast cancer. This attitude is wrong and very dangerous. Having a physical disability does not reduce your risk of getting breast cancer. Indeed, it may cause you to have higher risks.

Attitudes of healthcare providers sometimes pose a barrier to maintaining breast health. Either they have received incorrect information that disability lowers the risk of breast cancer or they incorrectly assume that getting a mammogram is too much trouble. We advise women to be on the lookout for this type of attitude barrier and talk with their healthcare provider about their right to complete preventive screenings.

Some women with physical disabilities may not have an intimate partner or may not be sexually active. This may reinforce the wrong notion that breast health is not important. Intimate partners are sometimes the ones who discover a lump or other changes in breast structure. Not being sexually active can reduce your opportunities to check for signs of breast problems.

Breast Self-Exam--Monitoring Changes in What Is Normal for You

Although most guidelines no longer recommend breast self-exams for average risk women, it is still important for you to be aware of how your breasts usually look and feel and notify your provider about any changes. If weakness, limited reach, swollen joints, or lack of feeling in your hands makes it difficult, we encourage you to experiment with different positions and ask trusted others to help you examine your breasts. For more information and links to other resources on disability and the breast self-exam, visit our page on Breast Self-Exam.

Breast Cancer Screening

There are two ways to be screened for breast cancer by a healthcare provider—a clinical breast exam and a mammogram. The clinical breast exam can only detect tumors at more advanced stages. If you usually see a family physician or internal medicine primary care provider, you may need to ask them to exam your breasts. You can stay seated in a wheelchair if you are unable to get up on the exam table. If you see an OB/GYN (woman’s doctor), a clinical breast exam is always part of the annual well woman exam. If you detect a change and think you might have a problem, you can request an appointment anytime.

Mammography

Mammography is a technique using X-rays to diagnose and locate tumors of the breasts. Women with disabilities can take three steps to ensure having a successful experience with mammography.

• Making sure your healthcare provider refers you to have a mammogram,
• Finding a facility that meets your needs for accessibility, and
• Working with the mammography technician to get in the right position for scanning as much of your breast tissue as possible.

For more information about these three steps and link to the many materials developed by other organizations on mammography and women with disabilities, visit our page on Mammography.

Breast Cancer

Women with disabilities may be at greater risk for breast cancer if they have never had children, have had more than average exposure to chest radiation, have limited physical activity, or are obese. For information on diagnosis and treatment issues, visit our page on Breast Cancer Research.

Interventions to Promote Breast Health

Some excellent materials are available to use in promoting breast health among women with disabilities. Both the American Association on Health and Disability’s page on Women’s Health and the Centers for Disease Control & Prevention’s Right to Know Campaign are valuable resources to explore for fact sheets and other educational materials. Researchers who have developed programs to increase rates of breast cancer screening among women with

disabilities have struggled to have a significant effect. We believe that breast health campaigns conducted by women with disabilities or hosted by disability-controlled organizations might achieve better results.

• Breast Cancer Fast Facts
  Office on Women’s Health
  (General facts about breast cancer, including tips for women with physical disabilities.)
   
• Breastcancer.org
  (General information about breast cancer. Contains information about symptoms, diagnosis, living with breast cancer, and prevention.)
   
• The Right to Know Campaign
  The Centers for Disease Control & Prevention
  (Focuses on women with disabilities. Contains downloadable flyers, factsheets, tip sheets in English and Spanish, basic information, posters, and audio podcasts with transcripts of stories by four women with disabilities about their experience with breast cancer.)
   
• My Body, My Responsibility: A Health Education Video for Deaf Women (video, 2003)
  (Educates young deaf women on important health care issues. Detailed information on breast self-exam. Models use a sign language interpreter in a healthcare setting.) Contact University of Rochester Deaf Wellness Center, 585.275.6785. Order video.
   
• Our Bodies, Ourselves (book)
  Boston Women’s Health Book Collective
  (Covers a range of women’s health issues including women with disabilities. Available for purchase through online book retailers.) Order book.
   
• Susan G. Komen Foundation
  (General information about breast cancer and cancer research.)
   
• Women’s Health
  American Association on Health and Disability
  (Focuses on women with disabilities. Contains factsheets, posters, webinars, tip cards, and more.)

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