Tips for Women with Disabilities: Getting Your Mammogram

Q:  What is a mammogram?

           A low-dose X-ray picture of the breasts used to find breast cancer.

Q:  Why is it important to get a mammogram?

• A mammogram can find cancer when it is small and easier to treat.  A mammogram can also find other breast changes before they can be felt such as a cyst or a lump.
• Most breast changes that are found are usually benign (non-cancerous).

Q.  How often should a woman get a mammogram?

• Susan G. Komen for the Cure® recommends that if you are 40 years and older, you should have a mammogram every year.
• If you are a woman younger than 40, you should talk with your health care provider about your risk for breast cancer and the possible need for earlier mammograms.
• Some women with disabilities may be at higher risk for breast cancer due to certain factors such as family history, lack of physical activity, obesity, lack of or delayed childbearing, radiation exposure, starting menstruation at an early age (before age 12) and/or going through menopause at a later age (after age 55), or delayed diagnosis due to barriers in obtaining preventive screening.  If you are at higher risk for breast cancer, talk to your health care provider. 

Q.  How can I, a woman with a disability, have good breast health care?

• Know your risk of getting breast cancer by talking to your family to learn about your family health history, and then discuss your personal risk with your health care provider.
• Get  screened – by having a mammogram every year starting at 40 if you are at average risk.  Have a clinical breast exam at least every 3 years starting at age 20, and every year starting at 40. Ask your doctor which screening tests are right for you if you are at higher risk.

• Know what is normal for you.  Learn the way your breasts look and feel, which will help you know when something has changed. Breast Self-Examination (BSE) is a tool that may help you learn what is normal for you.  It includes looking at and feeling your breasts and can be done while in the shower, while lying in bed, and in front of a mirror. Report any changes to your health care provider if you notice any of the following changes in one or both of your breasts: a lump, hard knot or thickening; swelling, warmth, redness or darkening; change in the breast’s size or shape; a dimple or dent in the skin; itchy, scaly sore or rash on the nipple; discharge from the nipple that starts suddenly; or new pain in one location of the breast area that does not go away.
• Make healthy lifestyle decisions by maintaining a healthy weight, getting regular exercise, and limiting your alcohol intake.
• Make an appointment for your mammogram when your breasts will be least tender, usually the week after your period.

• Prepare for the mammogram by wearing a blouse that opens in the front or a top that is easy to take off at the mammogram visit. Don’t wear underarm deodorant. Don’t wear body powder or lotion on or near the breasts that day.

• At the exam, take information about your medical history, to provide the health care provider with information on any changes in your medical history and medicines, any pain or breast problems, the date of your last period, your current medications, and any chronic pain or breast problems.
• Be a self-advocate!  When scheduling the mammogram appointment, you or your health care provider should inform the scheduling staff of your particular disability and request any reasonable accommodations that you will need, such as extra time, a sign language interpreter, or assistance with dressing or positioning.  If you have had a mammogram before, tell the technologist what positioning or accommodations have worked for you in the past.
• Depending upon your disability, consider requesting the following accommodations when scheduling the appointment and use these suggested tips during the exam:

• Blind or Visual Disabilities: Inform staff if you will need alternate formats of printed material such as large print, computer disc/CD-ROM, Braille, or cassette tape.  Tell the staff if you would like a sighted guide to walk with you through the area.

• Communication Disabilities:  Inform the staff that it might take extra time for you to communicate effectively with them.  Let staff know your preferred way to communicate.

• Deaf or Hard of Hearing:  Use the Relay Telecommunications system to communicate with mammogram facility staff when scheduling or calling the office.  Let the staff know if you need a sign language interpreter at least a few days in advance of your appointment. Invite a friend or family member to go with you if you think you may have trouble hearing or understanding the instructions or medical information.  Let the health care staff know about your hearing loss and how they can help you communicate and understand.

• Emotional Disabilities:  Before the exam, prepare emotionally by thinking about the importance of having a mammogram and practicing relaxation and deep breathing techniques. Use these techniques during the exam to lessen anxiety. This tip can be used by women with other disabilities as well. It might be helpful to remember that any discomfort you may experience during the mammogram exam lasts only a few seconds.  Invite a friend or family member to go with you if she will help make you feel more at ease.

• Intellectual Disabilities:  It is important to ask questions if you don’t understand something. You might want to have someone you trust come and take notes and help you with questions.    Ask for your caregiver to stay with you if this would help you feel calmer.   Ask the staff to tell you slowly what is going to happen. 

• Physical/Mobility Disabilities: Let scheduling staff know if you use a wheelchair, scooter, walker, or cane. Ask about the facility’s accessibility (including the parking lot, building, elevator, waiting area, mammography suite, dressing room and restrooms). Tell the scheduling staff if you need assistance to sit upright, stand, lift and move your arms, transfer from your wheelchair or scooter to a positioning chair if available, and undress and dress.   Ask if you can be accommodated in your wheelchair.   Tell staff if you have spasticity or other physical issues that may interfere with the mammogram procedure.   

Q.   May I invite a friend or family member to go to my mammogram appointment with me?

Yes.  You can ask the technologist if your friend or family can go in with you to have the screening.  Some mammography clinics allow this and some may not.  Just ask.

Q.  What should I do after the mammogram?

• You will likely get your results in the mail.  You can call your health care provider if you have questions.
• If the mammography clinic staff has questions about your mammogram, they will call you.

RESOURCES
American Association on Health & Disability www.aahd.us

American Association on Health & Disability’s Susan G. Komen for the Cure® Grant

Breast Health Access for Women with Disabilities (BHAWD) www.bhawd.org

Centers for Disease Control & Prevention (CDC) Right to Know Campaign www.cdc.gov/ncbddd/women/righttoknow/default.htm

Center for Research on Women with Disabilities www.bcm.edu/crowd

The National Women’s Health Information Center www.womenshealth.gov

North Carolina Office on Disability and Health/Chapel Hill, NC www.fpg.unc.edu/~ncodh

Susan G. Komen for the Cure® www.komen.org
For more information, please contact Komen Project Coordinator at 301-545-6140 x203 or visit our website at www.aahd.us

This publication was made possible by a grant from

Susan G. Komen for the Cure