educational programs

Women with

Disabilities

Prevention, Diagnosis, and Treatment of Breast Cancer in Women with DisabilitiesPart 1: Incidence and Risk

Women with Disabilities Education Project

Overview

Part 1:Incidence and Risk

Part 2:Screening and Diagnosis

Part 3:Treatment, Rehabilitation, and Ongoing Care

www.womenwithdisabilities.org

Incidence

Breast Cancer in the United States: Incidence

182,000 new cases diagnosed annually1

One-third of all new cancers diagnosed in American women2

1. American Cancer Society. Cancer Reference Information. Revised: September 13, 2007. 2. Ahmedin J, et al. CA Cancer J Clin. 2007;57:43-66.

Breast Cancer in the United States: Mortality

24% since 19901

Claims 40,000 women’s lives annually

Second-leading cause of cancer-related death in American women2

1. Ismail J, et al. J of Clin Oncology. 2007;25:TK-TK.2. American Cancer Society. Cancer Reference Information. Revised: September 13, 2007.

Women with disabilities have the same risk of breast cancer as women without disabilities.

1 in 8 lifetime risk1

1. American Cancer Society. Breast Cancer Facts & Figures 2007-2008.

Women with disabilities are one-third more likely to die from their breast cancer than women without disabilities1

1. McCarthy EP, et al. Ann Intern Med. 2006;145:637-645.

Why the Disparity?

After surgery for breast cancer, women with disabilities are less likely to receive:1

– Radiotherapy

– Axillary lymph node dissection

They are also less likely to receive:– Screening mammograms2

Does lack of exercise play a role?

1. McCarthy EP, et al. Ann Intern Med. 2006;145:637-645.2. Iezzoni LI, et al. Am J of Public Health. 2000;90:955-961.

Coming to Terms

What does disability mean?

Americans with Disabilities Act

Has a physical or mental impairment that substantially limits one or more of the major life activities of such individual;

Has a record of such an impairment; or

Is regarded as having such an impairment1

A Person Has a Disability if He or She:

1. Americans with Disabilities Act of 1990.

U.S. Surgeon General’s “Call to Action to Improve the Health and Wellness of Persons with Disabilities”

Disabilities Are…

“…characteristics of the body, mind, or senses that, to a greater or lesser extent, affect a person’s ability to engage independently in some or all aspects of day-to-day life.”

Disabilities Are Not Illnesses.

“Just as health and illness exist along a continuum, so, too, does disability. Just as the same illnesses can vary in intensity from person to person, so, too, can the same condition lead to greater or lesser limitation in activity from one person to another.”1

1. Office of the Surgeon General. Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities. 2005.

Disability Models

Medical Model Individual problem

Directly caused by disease

Social Model Does not reside in individual

Created by environmental barriers

Words Matter

HandicappedDisabled Crippled

Defective

The Importance of Language

Avoid Use InsteadThe handicapped People with (who have)

disabilities

Mentally ill person Person with a mental illness

Stroke victim Person who had a stroke

Person confined to a wheelchair; wheelchair-bound

Person who uses a wheelchair

Able bodied Nondisabled

Risk Factors

Relative Risk Factors for Breast Cancer

Increasing age

Family history of breast cancer in first-degree relative

BRCA gene mutations

Early menarche, late menopause

Nulliparity or > 35 years old at birth of first child

No history of breast-feeding

Personal history of breast cancer or certain noncancerous breast diseases/conditions, including higher breast density

Being overweight

Not getting regular exercise

Long-term use of hormone replacement therapy

Use of oral contraceptives

Alcohol consumption (more than one drink a day)

Treatment-dose radiation to the breast/chest

Factors That Put Women at High Risk

A BRCA gene mutation

A very strong family history of breast cancer, such as a mother or sister who was diagnosed with breast cancer at age 40 or younger

A personal history of breast cancer, LCIS, or atypical hyperplasia

Past exposure to treatment-dose ionizing radiation during childhood or young adulthood

Risk-Reduction Strategies for Women with Disabilities

All women should have a breast cancer risk assessment and be offered appropriate risk-management strategies

Identifying High-Risk Women

Encourages Women to: Have more rigorous screening Be counseled about preventive

therapies

Assessment Tools: Epidemiologic risk-assessment

models (e.g., Gail model) Genetic testing

The Modified Gail Model

Risk Factors Used In Calculation:1

Current age

Age at menarche

Age at first live birth or nulliparity

Number of first-degree relatives with breast cancer

Number of previous benign breast biopsies

Atypical hyperplasia in a previous breast biopsy

Race

1. National Comprehensive Cancer Network (NCCN). Risk factors used in the modified Gail Model; 2007.

The Modified Gail Model

5-year Gail risk < 1.66% = low risk

5-year Gail risk > 1.66% = high risk

NCI’s Breast Cancer Risk Assessment Tool:

www.cancer.gov/bcrisktool

Genetic Testing

May predict risk more accurately than family history alone1

5%–10% of women who develop breast cancer have BRCA gene mutations1

Women with BRCA mutations havelifetime risk of1

– Up to 85% for breast cancer

– Up to 60% for ovarian cancer

BRCA carriers at highest risk have family history of2

– Breast cancer diagnosis ≤ age 35

– Contralateral breast cancer

1. Myers MF, et al. Genetics in Medicine. 2006;8:361-370.2. Begg CB, et al. JAMA. 2008;299:194-201.

Clinical Options for Managing Women at High Risk

Increased surveillance– Clinical breast exam

– Mammography

– MRI

Chemoprevention– Tamoxifen

– Raloxifene

Prophylactic surgery

Tamoxifen and Raloxifene: AssessingRisks for Women with Disabilities

Increased risk of stroke and thromoboembolic events (women with limited mobility already at risk)1

Increased risk of uterine cancer1

Other risks:2

– Cataracts and other eye problems

– Bladder problems

– Vaginal problems

1. Vogel VG, et al., for the National Surgical Adjuvant Breast and Bowel Project (NSABP). JAMA. 2006;295:2727-2741.2. National Cancer Institute. Reviewed May 13, 2002. Available at www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen.

Managing Women with Disabilities on Tamoxifen and Raloxifene

Assess patient’s individual risk for thromoboembolism

Advise and assist patient with:– Quitting smoking

– Lowering blood pressure

– Maintaining a healthy weight

– Exercising regularly

Follow patient closely

Prophylactic Breast Surgery: Assessing Risks for Women with Disabilities

Reduces breast cancer risk by 90% in high-risk women1

Most high-risk women report satisfaction with decision to have the surgery2

Patient satisfaction is more variable regarding cosmetic results and body image2

Special concern for women with disabilities:

How will the surgery affect my mobility and quality of life?

1. Hartmann L, et al. N Engl J Med. 1999;340:77-84.2. Lostumbo L, et al. Cochrane Database of Systematic Reviews. 2004;4:CD002748.

Managing Women with Disabilities Who Chose Prophylactic Surgery

Discuss with patient how surgery will affect her adaptive and assistive needs

Make sure patient has sufficient home care after surgery

Start physical therapy before surgery

Postsurgical physical therapy essential for restoring function and quality of life

Modifiable Risk Factors

Being overweight– Women overweight

at age 50:50% increase in risk1

Not getting enough exercise– 1.25–2.5 hours of

brisk walking: 18% decrease in risk2

Consuming alcohol daily– Each 10 g of daily alcohol: 7.2% increase in risk3

1. Ahn J, et al. Arch Intern Med. 2007;167:2091-2102.2. McTiernan A, et al. JAMA. 2003;290:1331-1336.3.Chen WY, et al. Ann Intern Med. 2002;137:798-804.

Women with disabilities often have more difficulty altering modifiable risk factors

Distribution of Barriers to Improving Eating Habits (n=359)*

* Participants were able to cite more than one barrier.Source: Hall L, Colantonio A, and Yoshida K. Int J of Rehabilitation Research. 2003;26:245-247.

Barriers Frequency Percentage

Too tired to cook 194 54.6

Organic foods/health foods too expensive 125 34.8

Nutritious foods too expensive 124 34.5

Lack of desire or will power 113 31.5

Government disability pension is not enough 110 30.6

Too hard to go shopping 90 25.1

Not enough attendant time to shop/prepare food 76 21.2

Local food stores too expensive 69 19.2

Too busy 62 17.3

Difficulty chewing and swallowing fruit and vegetables 61 17.0

Not enough assistance with shopping 49 13.6

Local food stores not physically accessible 39 10.8

Food bank does not provide adequate source for food 34 9.5

Nutritional information not available in alternate formats 21 5.8

Attendant does not have enough time to help with feeding 3 0.8

Other 47 13.1

Barriers to Increasing Physical Activities

Lack of transportation

Lack of money

Lack of time

Inaccessible fitness centers

Healthcare and fitness professionals who are inexperienced with working with people with disabilities

Lack of social support

Fatigue and pain

Barriers to Increasing Physical Activities

Lack of self-knowledge about capabilities for exercise and/or skills needed to engage in physical activity

Equip your facility with a weight scale that accommodates wheelchairs

Refer patients with disabilities to a dietician with experience addressing their unique dietary and exercise issues

www.ncpad.org

National Center on Physical Activity and Disability (NCPAD)

Alcohol Use Among Women with Disabilities

Alcohol use is as prevalent among women with disabilities as among the general female population1

Discuss alcohol use and its breast cancer risk with all patients

Patients at high risk of breast cancer must carefully weigh risks and benefits of moderate alcohol use

1. Li L, Ford JA. Applied Behavioral Sci Rev. 1996;4:99-109.

Summary

Women with disabilities have same breast cancer risk as other women, but are one-third more likely to die from the disease

Reasons for this disparity in survival are unknown, but women with disabilities are less likely to undergo standard chemo and/or radiation therapy after breast-conserving surgery and are less likely to have regular screening mammograms

All women with disabilities should be assessed for their breast cancer risk and offered risk-reduction strategies

Risk-reduction strategies raise special issues for women with disabilities that need a thorough clinician-patient discussion

Helping women with disabilities alter modifiable risk factors and adopt a more healthful lifestyle may require special tools and strategies

Resources

Breast Health Access for Women with Disabilities (BHAWD)Call: 512-204-4866TDD: 510-204-4574www.bhawd.org

Center for Research on Women with Disabilities (CROWD)Baylor College of MedicineCall: 800-442-7693www.bcm.edu/crowd

Health Promotion for Women with DisabilitiesVillanova University College of NursingCall: 610-519-6828www.nursing.villanova.edu/womenwithdisabilities

Magee-Women’s Foundation“Strength & Courage Exercise DVD” (a compilation of exercises helpful to breast cancer patients)http://foundation.mwrif.org/

National Breast and Cervical Cancer Early Detection ProgramCenters for Disease Control and PreventionCall: 1-800-CDC-INFOTTY: 1-888-232-6348www.cdc.gov/cancer/nbccedp

National Center of Physical Activity and DisabilityCall: 1-800-900-8086TTY: 1-800-900-8086www.ncpad.org

The National Women’s Health Information CenterCall: 1-800-994-9662TDD: 1-888-220-5446www.4women.gov/wwd

Susan G. Komen for the Curewww.komen.org

Women with DisabilitiesCenters for Disease Control and Preventionwww.cdc.gov/ncbddd/women

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