Prevention, Diagnosis, and Treatment of Breast Cancer in Women with DisabilitiesPart 1: Incidence and RiskWomen with Disabilities Education Project

OverviewPart 1: Incidence and RiskPart 2: Screening and DiagnosisPart 3: Treatment, Rehabilitation, and Ongoing Care

www.womenwithdisabilities.org

Incidence

Breast Cancer in the United States: Incidence182,000 new cases diagnosed annually1One-third of all new cancers diagnosed in American women21. 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 19901Claims 40,000 womens lives annuallySecond-leading cause of cancer-related death in American women21. 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 disabilities11. 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:1RadiotherapyAxillary lymph node dissectionThey are also less likely to receive:Screening mammograms2Does 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 ActHas 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; orIs regarded as having such an impairment1A Person Has a Disability if He or She:1. Americans with Disabilities Act of 1990.

U.S. Surgeon Generals Call to Action to Improve the Health and Wellness of Persons with DisabilitiesDisabilities Arecharacteristics of the body, mind, or senses that, to a greater or lesser extent, affect a persons 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.11. Office of the Surgeon General. Surgeon Generals Call to Action to Improve the Health and Wellness of Persons with Disabilities. 2005.

Disability ModelsMedical ModelIndividual problemDirectly caused by diseaseSocial ModelDoes not reside in individualCreated by environmental barriers

Words MatterHandicappedDisabled CrippledDefective

The Importance of Language

Risk Factors

Relative Risk Factors for Breast CancerIncreasing ageFamily history of breast cancer in first-degree relativeBRCA gene mutationsEarly menarche, late menopauseNulliparity or > 35 years old at birth of first childNo history of breast-feedingPersonal history of breast cancer or certain noncancerous breast diseases/conditions, including higher breast density

Being overweightNot getting regular exerciseLong-term use of hormone replacement therapyUse of oral contraceptivesAlcohol consumption (more than one drink a day)Treatment-dose radiation to the breast/chest

Factors That Put Women at High RiskA BRCA gene mutationA very strong family history of breast cancer, such as a mother or sister who was diagnosed with breast cancer at age 40 or youngerA personal history of breast cancer, LCIS, or atypical hyperplasiaPast exposure to treatment-dose ionizing radiation during childhood or young adulthood

Risk-Reduction Strategies for Women with DisabilitiesAll women should have a breast cancer risk assessment and be offered appropriate risk-management strategies

Identifying High-Risk WomenEncourages Women to:Have more rigorous screeningBe counseled about preventive therapiesAssessment Tools:Epidemiologic risk-assessment models (e.g., Gail model)Genetic testing

The Modified Gail ModelRisk Factors Used In Calculation:1Current ageAge at menarcheAge at first live birth or nulliparityNumber of first-degree relatives with breast cancerNumber of previous benign breast biopsiesAtypical hyperplasia in a previous breast biopsyRace1. National Comprehensive Cancer Network (NCCN). Risk factors used in the modified Gail Model; 2007.

The Modified Gail Model5-year Gail risk < 1.66% = low risk 5-year Gail risk > 1.66% = high riskNCIs Breast Cancer Risk Assessment Tool: www.cancer.gov/bcrisktool

Genetic TestingMay predict risk more accurately than family history alone15%10% of women who develop breast cancer have BRCA gene mutations1Women with BRCA mutations have lifetime risk of1Up to 85% for breast cancerUp to 60% for ovarian cancerBRCA carriers at highest risk have family history of2Breast cancer diagnosis age 35Contralateral breast cancerMyers MF, et al. Genetics in Medicine. 2006;8:361-370.Begg CB, et al. JAMA. 2008;299:194-201.

Clinical Options for Managing Women at High RiskIncreased surveillanceClinical breast exam MammographyMRIChemopreventionTamoxifenRaloxifeneProphylactic surgery

Tamoxifen and Raloxifene: AssessingRisks for Women with DisabilitiesIncreased risk of stroke and thromoboembolic events (women with limited mobility already at risk)1Increased risk of uterine cancer1Other risks:2Cataracts and other eye problemsBladder problemsVaginal problems1. 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 RaloxifeneAssess patients individual risk for thromoboembolismAdvise and assist patient with:Quitting smokingLowering blood pressureMaintaining a healthy weightExercising regularlyFollow patient closely

Prophylactic Breast Surgery: Assessing Risks for Women with DisabilitiesReduces breast cancer risk by 90% in high-risk women1Most high-risk women report satisfaction with decision to have the surgery2Patient 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 SurgeryDiscuss with patient how surgery will affect her adaptive and assistive needsMake sure patient has sufficient home care after surgeryStart physical therapy before surgeryPostsurgical physical therapy essential for restoring function and quality of life

Modifiable Risk FactorsBeing overweightWomen overweight at age 50: 50% increase in risk1Not getting enough exercise1.252.5 hours of brisk walking: 18% decrease in risk2Consuming alcohol dailyEach 10 g of daily alcohol: 7.2% increase in risk31. 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.

BarriersFrequencyPercentageToo tired to cook19454.6Organic foods/health foods too expensive12534.8Nutritious foods too expensive12434.5Lack of desire or will power11331.5Government disability pension is not enough11030.6Too hard to go shopping9025.1Not enough attendant time to shop/prepare food7621.2Local food stores too expensive6919.2Too busy6217.3Difficulty chewing and swallowing fruit and vegetables6117.0Not enough assistance with shopping4913.6Local food stores not physically accessible3910.8Food bank does not provide adequate source for food349.5Nutritional information not available in alternate formats215.8Attendant does not have enough time to help with feeding30.8Other4713.1

Barriers to Increasing Physical ActivitiesLack of transportationLack of moneyLack of timeInaccessible fitness centersHealthcare and fitness professionals who are inexperienced with working with people with disabilitiesLack of social supportFatigue and pain

Barriers to Increasing Physical ActivitiesLack 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 wheelchairsRefer patients with disabilities to a dietician with experience addressing their unique dietary and exercise issues

www.ncpad.orgNational Center on Physical Activity and Disability (NCPAD)

Alcohol Use Among Women with DisabilitiesAlcohol use is as prevalent among women with disabilities as among the general female population1Discuss alcohol use and its breast cancer risk with all patientsPatients at high risk of breast cancer must carefully weigh risks and benefits of moderate alcohol use1. Li L, Ford JA. Applied Behavioral Sci Rev. 1996;4:99-109.

SummaryWomen with disabilities have same breast cancer risk as other women, but are one-third more likely to die from the diseaseReasons 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 mammogramsAll women with disabilities should be assessed for their breast cancer risk and offered risk-reduction strategiesRisk-reduction strategies raise special issues for women with disabilities that need a thorough clinician-patient discussionHelping 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: 512-204-4866 TDD: 510-204-4574 www.bhawd.org Center for Research on Women with Disabilities (CROWD) Baylor College of Medicine Call: 800-442-7693 www.bcm.edu/crowdHealth Promotion for Women with Disabilities Villanova University College of Nursing Call: 610-519-6828 www.nursing.villanova.edu/womenwithdisabilitiesMagee-Womens 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 Program Centers for Disease Control and Prevention Call: 1-800-CDC-INFO TTY: 1-888-232-6348 www.cdc.gov/cancer/nbccedpNational Center of Physical Activity and Disability Call: 1-800-900-8086 TTY: 1-800-900-8086 www.ncpad.orgThe National Womens Health Information Center Call: 1-800-994-9662 TDD: 1-888-220-5446 www.4women.gov/wwdSusan G. Komen for the Cure www.komen.orgWomen with Disabilities Centers for Disease Control and Prevention www.cdc.gov/ncbddd/women

ReferencesAhmedin J, Siegel R, Ward E, Murray T, Xu J, and Thun MJ. Cancer statistics, 2007. CA Cancer J Clin. 2007;57:43-66.Ahn J, Schatzkin A, Lacey JV, et al. Adiposity, adult weight change, and postmenopausal breast cancer risk. Arch Intern Med. 2007;167:2091-2102.American Cancer Society. American Cancer Society guidelines for breast screening with MRI as an adjunct to mammography. CA Cancer J Clin. 2007;57:75-89. American Cancer Society. American Cancer Society issues recommendation on MRI for breast cancer screening. March 28, 2007. Available online.American Cancer Society. Breast Cancer Facts & Figures 2007-2008. Atlanta: American Cancer Society, Inc.; 2007.American Cancer Society. Detailed guide: breast cancer: what are the key statistics for breast cancer? Cancer Reference Information. Revised: September 13, 2007. Americans with Disabilities Act of 1990. Public Law 101-336. U.S. Statutes at Large 104 (1990), codified at U.S. Code 42,12101. Available at www.ada.gov/pubs/ada.htm#Anchor-Sec-47857.Becker L, Taves, D, McCurdy L, et al. Stereotactic core biopsy of breast microcalcifications: comparison of film versus digital mammography, both using an add-on unit. AJR. 2001;177:1451-1457.Begg CB, Haile RW, Borg A, et al. Variation of breast cancer risk among BRCA 1/2 carriers. JAMA. 2008;299:194-201.Berry DA, Cronin KA, Plevritis SK, et al. Effect of screening and adjuvant therapy on mortality from breast cancer. N Eng J Med. 2005;353:1784-1792.

Breast Health Access for Women with Disabilities (BHAWD). Breast health and beyond: a providers guide to the examination and screening of women with disabilities, 2nd ed. January 2008.Caban ME, Nosek MA, Graves D, Esteva FJ,McNeese M. Breast carcinoma treatment received by women with disabilities compared with women without disabilities. Cancer. 2002;94:1391-1396.Chen WY, Colditz GA, Rosner B, et al. Use of postmenopausal hormones, alcohol, and risk for invasive breast cancer. Ann Intern Med. 2002;137:798-804.Collaborative Group on Hormonal Factors in Breast Cancer. Alcohol, tobacco and breast cancercollaborative reanalysis of individual data from 53 epidemiological studies, including 58,515 women with breast cancer and 95,067 women without the disease. Brit J of Cancer. 2002;87:1234-1245.CROWD, Baylor College of Medicine. Health behaviorsweight management; 2007. Available at www.bcm.edu/crowd/?pmid=1430.Elmore JG, Fletcher SW. The risk of cancer risk prediction: what is my risk of getting breast cancer? J of the NCI. 2006;98:1673-1675.Finch A, Beiner M, Lubinski J, et al. Salpingo-oophorectomy and the risk of ovarian, fallopian tube, and peritoneal cancers in women with a BRCA1 or BRCA2 mutation. JAMA. 2006;296:185-192.Fisher B, et al. Twenty-year follow-up of a randomized trial comparing total mastectomy, lumpectomy, and lumpectomy plus irradiation for the treatment of invasive breast cancer. N Engl J Med. 2002;347:1233-1241.Hall L, Colantonio A, Yoshida K. Barriers to nutrition as a health promotion practice for women with disabilities. Int J of Rehabilitation Research. 2003;26:245-247.

Hartmann LC, Schaid DJ, Woods JE, et al. Efficacy of biolateral prophylactic mastectomy in women with a family history of breast cancer. N Engl J Med. 1999;340:77-84.Herrera JE, Stubblefield MD. Rotator cuff tendonitis in lymphedema: a retrospective case series. Arch Phys Med Rehabil. 2004:85:1939-1942.Holmes MD, Chen WY, Feskanich D, Kroenke CH, Colditz GA. Physical activity and survival after breast cancer diagnosis. JAMA. 2005;293:2479-2486.Hughes RB. Achieving effective health promotion for women with disabilities. Family & Community Health. 2006;29:44S-51S. Humphrey LL, Helfand M, Chan BK, Woolf SH. Breast cancer screening: a summary of the evidence for the U.S. Preventive Services Task Force. Ann Intern Med. 2002;137:344-346.Iezzoni LI, McCarthy EP, Davis RB, Siebens H. Mobility impairments and use of screening and preventive services. Am J of Public Health. 2000;90:955-961.Irwig L, Houssami N, van Vliet C. New technologies in screening for breast cancer: a systematic review of their accuracy. Brit J Cancer. 2004;90:2118-2122.Ismail J, Chen BE, Anderson WF, Rosenberg PS. Breast cancer mortality trends in the United States according to estrogen receptor status and age at diagnosis. J of Clin Oncology. 2007;25:TK-TK.Kaplan C, Richman S. Informed consent and the mentally challenged patient. Contemporary Ob/Gyn. 2006;51:63-72.Kauff ND, Domcheck SM, Friebel TM, et al. Risk-reducing salpingo-oophorectomy for the prevention of BRCA1- and BRCA2-associated breast and gynecologic cancer: a multicenter, prospective study. J Clin Oncology. 2008:26:1331-13337.

Khatcheressian JL, Wolff AC, Smith TJ, et al. American Society of Clinical Oncology 2006 update of the Breast Cancer Follow-Up and Management Guidelines in the Adjuvant Setting. J Clin Oncology. 2006;24:5091-5097.Kosters JP, Gotzsche PC. Review: regular self-examination or clinical examination for early detection of breast cancer. Cochrane Database of Systematic Reviews. 2003;2:CD003373.Li L, Ford JA. Triple threat: alcohol abuse by women with disabilities. Applied Behavioral Sci Rev. 1996;4:99-109.Lostumbo L, Carbine N, Wallace J, Ezzo J. Prophylactic mastectomy for the prevention of breast cancer. Cochrane Database of Systematic Reviews. 2004;4:CD002748.McCarthy EP, Ngo LH, Roetzheim RG, et al. Disparities in breast cancer treatment and survival for women with disabilities. Ann Intern Med. 2006;145:637-645.McDonald S, Saslow D, Alciati MH. Performance and reporting of clinical breast examination: a review of the literature. CA Cancer J Clin. 2004;54:345-361.McNeely JL, Campbell KL, Rowe BH, Klassen TP,Mackey JR, Courneya KS. Effects of exercise on breast ancer patients and survivors: a systematic review and meta-analysis. CMAJ. 2006:175-34-41.McTiernan A, Kooperberg C, White E, et al. Recreational physical activity and the risk of breast cancer in postmenopausal women. JAMA. 2003;290:1331-1336.Meijers-Heijboer H, van Geel B, van Putten WL, et al. Breast cancer after prophylactic bilateral mastectomy in women with a BRCA1 or BRCA2 mutation. N Engl J Med. 2001;345:159-164.Mele N, Archer J, Pusch BD. Access to breast cancer screening services for women with disabilities. JOGNN. 2005;34:453-464.

Moore RF. A guide to the assessment and care of the patient whose medical decision-making capacity is in question. Medscape General Medicine. 1999;1:(3). Available at www.medscape.com/viewarticle/408024_1.Myers MF, Change M-H, Jorgensen C, et al. Genetic testing for susceptibility to breast and ovarian cancer: evaluating the impact of a direct-to-consumer marketing campaign on physicians knowledge and practices. Genetics in Medicine. 2006;8:361-370.National Cancer Institute. Breast cancer (PDQ): treatment. Available at www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional.National Cancer Institute. Ductal carcinoma in situ. Breast cancer (PDQ): treatment. Available at www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page5.National Cancer Institute. Estimating breast cancer risk: questions and answers. Updated September 5, 2006. Available at www.cancer.gov/Templates/doc.aspx?viewid=ac1e8937-d95b-4458-a78a-1fe33dbfcbdc.National Cancer Institute. Lymphedema after cancer: how serious is it? NCI Cancer Bulletin. 2007;4:5-6.National Cancer Institute. Tamoxifen: questions and answers. Reviewed May 13, 2002. Available at www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen.National Comprehensive Cancer Network (NCCN). NCCN Clinical Practice Guidelines in Oncology: Breast Cancer Screening and Diagnosis Guidelines. V.1.2007. Risk factors used in the modified Gail Model; 2007.National Survey of Women with Physical Disabilities. Recent research findings: findings on reproductive health and access to health care. Center for Research on Women with Disabilities, Baylor College of Medicine; 1996. Available at www.bcm.edu/crowd/finding4.html.

Nosek MA, Howland CA. Breast and cervical cancer screening among women with physical disabilities. Arch Phys Med Rehabil. 1997:78 (12 Suppl 5):S39-44.Nosek MA, Hughes RB, Petersen NJ, et al. Secondary conditions in a community-based sample of women with physical disabilities over a 1-year period. Arch Phys Med Rehabil. 2006;87:320-327.Office of the Surgeon General. Surgeon Generals Call to Action to Improve the Health and Wellness of Persons with Disabilities. Rockville, MD: Public Health Service; 2005.Ohira T, Schmitz KH, Ahmed RL, Yee D. Effects of weight training on quality of life in recent breast cancer survivors: the weight training for breast cancer survivors (WTBS) study. Cancer. 2006;106:2076-2083.Paskett ED, Naughton MJ, McCoy TP, Case LD, Abbott JM. The epidemiology of arm and hand swelling in premenopausal breast cancer survivors. Cancer Epidemiology Biomarkers & Prevention. 2007;16:775-782.Petrek JA, Senie RT, Peters M, Rosen PP. Lymphedema in a cohort of breast carcinoma survivors 20 years after diagnosis. Cancer. 2001;92:1368-1377.Poulos AE, Balandin S, Llewellyn G, Dew AH. Women with cerebral palsy and breast cancer screening by mammography. Arch Phys Med Rehabil. 2006;87:304-307.Randolph WM, Goodwin JS, Mahnken JD, Freeman JL. Regular mammography use is associated with elimination of age-related disparities in size and stage of breast cancer at diagnosis. Ann Intern Med. 2002;137:783-790.Robson M, Offit K. Clinical practice: management of an inherited predisposition to breast cancer. N Engl J Med. 2007;357:154-162.Schmitz KH, Ahmed RL, Hannan PJ, Yee D. Safety and efficacy of weight training in recent breast cancer survivors to alter body composition, insulin, and insulin-like growth factor axis proteins. Cancer Epidemiol Biomarkers Prev. 2005;14:1672-1680.

Shapiro CL, Manola J, Leboff M. Ovarian failure after adjuvant chemotherapy is associated with rapid bone loss in women with early-stage breast cancer. J of Clin Oncology. 2001;14:3306-3311.Smeltzer S. Preventive health screening for breast and cervical cancer and osteoporosis in women with physical disabilities. Family & Community Health. 2006;29:35S-43S.Smith, RA, Cokkinides V, Eyre HJ. American Cancer Society Guidelines for the Early Detection of Cancer, 2005. CA Cancer J Clin. 2005;55:31-44.Smith RA, Cokkinides V, Eyre HJ. Cancer Screening in the United States, 2007: a review of current guidelines, practices, and prospects. CA Cancer J Clin. 2007;57:90-104.Stubblefield MD, Custodio CM. Upper-extremity pain disorders in breast cancer. Arch Phys Med Rehabil. 2006;S96-S99.U.S. Department of Health and Human Services. Healthy People 2010, 2nd ed. Washington, DC: U.S. Public Health Services; 2000.U.S. Preventive Services Task Force. Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility. September 2006. Available at www.ahrq.gov/clinic/uspstf/uspsbrgen.htm#summary.U.S. Preventive Services Task Force. Screening for Breast Cancer: Recommendations and Rationale. Rockville, MD: Agency for Healthcare Research and Quality; 2002. Vogel VG, Costantino JP, et al., for the National Surgical Adjuvant Breast and Bowel Project (NSABP). Effects of tamoxifen vs. raloxifene on the risk of developing invasive breast cancer and other disease outcomes: the NSABP Study of Tamoxifen and Raloxifene (STAR) P-2 Trial. JAMA. 2006;295:2727-2741.

Welcome to this presentation on the Prevention, Diagnosis, and Treatment of Breast Cancer in Women with Disabilities, which is part of the Women with Disabilities Education Project, an innovative, multifaceted effort to significantly raise the quality of health care for women with disabilities. This presentation has been developed to help identify and eliminate the disparities in diagnosis, treatment, and aftercare for women with disabilities.

This is Part 1 of the presentation. It includes an overview of breast cancerrelated disparities faced by women with disabilities and a discussion of breast cancer incidence and risk.

Parts 2 and 3 are also available on the Women with Disabilities Education Projects Web site. Part 2 discusses special issues and concerns regarding breast cancer screening and diagnosis for women with disabilities. Part 3 explains the particular treatment, rehabilitation, and ongoing care needs for women with disabilities who have breast cancer.

At the end of each presentation, youll find a resource section thats helpful for healthcare providers and patients alike.

Well begin with a discussion of current breast cancer statistics and the breast-cancer-related disparities faced by women with disabilities. Breast cancer is a major health issue for all women. Each year, about 182,000 new cases of invasive breast cancer are diagnosed in the United States.1 Breast cancer is thus responsible for about one-third of all new cancers diagnosed in American women.2

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

Although the breast cancer death rate in the United States has dropped 24% since 1990,1 the disease annually claims the lives of about 40,000 women. It is thus the second-leading cause of cancer-related death in American women, exceeded only by lung cancer.2

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 are just as likely to develop breast cancer as other women. They, like all women in the United States, have a one in eight lifetime risk of developing the disease.1

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

Yet despite the fact that women with disabilities develop breast cancer at the same rate as other women, their risk of dying from the disease is higher. A 2006 study found that women with disabilities were about a third more likely to die from their breast cancer than women without disabilities.1

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

Why the disparity in survival? The study found that women with disabilities were less likely to undergo standard chemo and/or radiation therapy after breast-conserving surgery than other women.1

There is another known breast cancerrelated disparity for women with disabilities: They are often less likely to undergo regular mammography screening.2

Other not yet identified factors may be involved. For example, as research from the Nurses Health Study has found, moderate physical activity after a breast cancer diagnosis may reduce the risk of death from the disease.3 Women with disabilities are often limited in their ability to exercise.

McCarthy EP, et al. Ann Intern Med. 2006;145:637-645. Iezzoni LI, et al. Am J of Public Health. 2000;90:955-961. Holmes MD, et al. JAMA. 2005;293:2479-2486.

Before we can discuss the healthcare needs of women with disabilities, however, we need to understand what is meant by the terms disability and living with disabilities and how our word choices affect the way we think about disabilities and the people who live with them.

Surprisingly, the term disability is difficult to define. Yet, to ensure that women with disabilities receive full access to the best healthcare services available, each of us must unravel the complexities of the concept of disability and examine our own individual perceptions, beliefs, and ideas about what a disability isand isnt.

Under the 1990 Americans with Disabilities Act,1 a person with a disability is defined as someone who has a physical or mental impairment that substantially limits his or her activities; has a record of such an impairment; or is regarded as having such an impairment.

Note that disabled and impairment are quite different terms. Many people with an impairmentsay, a need to wear reading glassesare not disabled. Only when the impairment results in a person being excluded from active participation in society does the impairment become a disability.

1. Americans with Disabilities Act of 1990. Under the U.S. Surgeon Generals 2005 Call to Action to Improve the Health and Wellness of Persons with Disabilities, disabilities are defined as characteristics of the body, mind, or senses that, to a greater or lesser extent, affect a persons ability to engage independently in some or all aspects of day-to-day life.1

The Call to Action also stresses that a disability is not an illness. As the Surgeon Generals report notes: 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 Generals Call to Action to Improve the Health and Wellness of Persons with Disabilities. 2005.Historically, two models have been used to understand the concept of disability. The first is the medical model, which defines a disability as a problem of an individual that is directly caused by disease. Under this model, medical care is provided to the sick and disabled in order to cure them of disease and restore them to normal function. If normal function cannot be restored, then the individual with the disability is expected to readapt to fit into the world.

The social model of disability developed in response to the medical model. Its underlying premise is that a disability does not reside in an individual, but rather is created by a nonaccommodating environment. In this model the disability would not exist if environmental modifications were made to allow people with disabilities to participate fully.

The social model of disability is now widely accepted. Well be using it throughout this presentation.

Language is also important to how we think about disabilities. In the past, people with disabilities were routinely referred to as being handicapped or crippled. These and other common labels for disabilities have negative or misleading connotations and are now generally avoided when speaking to or about people with disabilities.

To avoid labels, we now put people first, not their disability. Thus, we say a person with a mental illness rather than a mentally ill person. Also, emotionally neutral language is preferred when referring to people with disabilities. No longer do we describe someone with a disability as being a victim of or afflicted with a particular impairment or disease.

In addition, our language should emphasize an individuals abilities rather than her limitations. The phrase a person who uses a wheelchair is preferable to a person confined to a wheelchair or a person who is wheelchair-bound.Well now examine the risk factors for breast cancer, including why its important for high-risk women to be identified. Well also discuss the clinical options for high-risk womenand the special concerns those options raise for women with disabilities. Although women with disabilities have not been found to be at an increased risk of developing breast cancer, they are more likely than women without disabilities to have some of the factors that increase their risk. They are more likely to be overweight, for example,1 and to lead a sedentary lifestyle.2 They are also more likely to have been exposed to treatment-dose radiation to the chest.2 In addition, women with disabilities have children at a lower rate than women without disabilities.3

U.S. Department of Health and Human Services. Healthy People 2010, 2nd ed. 2000.2. Mele N, Archer J, Pusch BD. JOGNN. 2005;34:453-464.3. National Survey of Women with Physical Disabilities. Center for Research on Women with Disabilities, Baylor College of Medicine; 1996. Only a few factors, however, put women at especially high risk of breast cancer, however. These area 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, lobular carcinoma in situ, or atypical hyperplasia;past exposure to treatment-dose ionizing radiation during childhood or young adulthood.

Primary care physicians should assess breast cancer risk in all their female patients, including those with disabilities, and all patients should also be offered appropriate risk-management strategies. When a woman is at high risk, she and her physician should work together to develop a plan for managing that risk.

Identifying women at high risk for breast cancer is potentially valuable because such women can be encouraged to undergo more rigorous screening. They can also be counseled about preventive therapies.

Assessments tools for determining breast cancer risk fall into two categories: epidemiologic risk-assessment models, such as the Gail model, and genetic testing.

The Gail model is the best-known and most widely used risk-assessment tool for breast cancer.1 It calculates a womans 5-year and lifetime risk of developing the disease. The calculation is based on specific risk factors,2 shown here. The model has been modified somewhat over the years and may be modified again soon to include other risk factors, such as breast density and the use of hormone therapy.3

Elmore JG, Fletcher SW. J of the NCI. 2006;98:1673-1675. National Comprehensive Cancer Network (NCCN). Risk factors used in the modified Gail Model; 2007. National Cancer Institute. Estimating breast cancer risk: questions and answers. Updated September 5, 2006.

A 5-year risk of less than 1.66% corresponds to a relatively low risk of developing breast cancer; a 5-year risk of greater than 1.66% is considered high risk.1 Its important to note that the current Gail model may not accurately assess breast cancer risk in non-Caucasian women.2

Although designed for use by health professionals, the Gail model and other epidemiologic risk-assessment tools are easily available through the Internet to clinicians and patients alike. The interactive Gail model available on the National Cancer Institutes Web site receives 20,000 to 30,000 visitors each month.3

National Cancer Institute. Estimating breast cancer risk: questions and answers. Updated September 5, 2006.2. National Comprehensive Cancer Network (NCCN). Risk factors used in the modified Gail Model; 2007.3. Elmore JG, Fletcher SW. J of the NCI. 2006;98:1673-1675.

Genetic testing is also used to assess breast cancer risk, especially for women with a family history of early onset breast cancer. Genetic testing may predict risk more accurately than family history alone.1Between 5% and 10% of women who develop breast cancer have a hereditary form of the disease with identifiable genetic mutations. The majority of hereditary breast (and/or ovarian) cancer has been linked to mutations in two genesBRCA1 and BRCA2. Women with BRCA mutations are estimated to have a lifetime risk of up to an 85% risk for breast cancer and up to 60% for ovarian cancer.1 But the risk varies among women carrying the gene mutation. BRCA carriers with the highest risk are those with a family member who was diagnosed with breast cancer at age 35 or younger and/or who had contralateral breast cancer.2The U.S. Preventive Services Task Force recommends that women with certain BRCA-related family history patterns be referred for genetic counseling and evaluation for BRCA testing.3

Myers MF, et al. Genetics in Medicine. 2006;8:361-370. Begg CB, et al. JAMA. 2008;299:194-201. U.S. Preventive Services Task Force. Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility. September 2006.

Clinical options for the management of women at high risk for breast cancer fall into three major categories: increased surveillance, chemoprevention, and prophylactic surgery.

Increased surveillance includes clinical breast exams and mammography. Some organizations, including the American Cancer Society, also recommend annual screening with magnetic resonance imaging (MRI) as well as mammography for women with a 20% to 25% or greater lifetime risk for the disease.1 (For a discussion of issues related to these screening methods and women with disabilities see Part 2: Screening and Diagnosis of this presentation.)

Chemoprevention, most notably tamoxifen and raloxifene, may be an option for some women at high risk for breast cancer. In the STAR (Study of Tamoxifen and Raloxifene) trial, both drugs reduced the risk of developing invasive breast cancer by about 50%.2

Bilateral prophylactic mastectomy and/or oophorectomy are options for some women. Prophylactic mastectomy has been shown to reduce breast cancer risk by 81% to 95% in women with a family history of the disease, including those who are BRCA mutation carriers.3 Women with a BRCA gene mutation are also at substantial risk of ovarian cancer. A prophylactic oophorectomy can lower the risk of gynecologic cancer by 80%,4 and there is good evidence that it may also substantially lower the risk of breast cancer, particularly for BRCA2 carriers.5

1. American Cancer Society. American Cancer Society issues recommendation on MRI for breast cancer screening. March 28, 2007. 2. Vogel VG, et al., for the National Surgical Adjuvant Breast and Bowel Project (NSABP). JAMA. 2006;295:2727-2741. 3. Meijers-Heijboer H, et al. N Engl J Med. 2001;345:159-164.4.Finch A, et al. JAMA. 2006;296:185-192.5. Kauff ND, et al. J Clin Oncology. 2008:26:1331-13337.

The National Comprehensive Cancer Network guidelines for management women at high risk for breast cancer can be accessed online at www.nccn.org.

As noted earlier, both tamoxifen and raloxifene have been found to reduce the number of breast cancers by about 50% in high-risk populations.1

Both drugs, however, increase the risk of stroke and thromboembolic events, although such events have been shown to occur significantly less often with raloxifene.1 This side effect is of particular concern for women whose disability reduces their mobility, for reduced mobility is itself a major risk factor for thromboembolism.

Taking tamoxifen or raloxifene also increases a womans risk of uterine cancer, although, again, the risk may be less with raloxifene.1

In addition, women taking tamoxifen and raloxifene are at increased risk of developing cataracts and other eye problems2a side effect of particular concern to women who already have limited vision. In addition, both drugs can cause hot flashes, bladder problems, vaginal discharge, vaginal dryness, or vaginal irritationside effects that can have a greater negative impact on quality of life for women with disabilities.

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.

Tamoxifen and raloxifene as primary preventive treatments for breast cancer should not be automatically ruled out for women with disabilities, but the increased risk of thromoboembolism, uterine cancer, and the drugs other side effects must be carefully considered.

Discuss the risks and benefits of tamoxifen and raloxifene for preventing breast cancer with your high-risk patients with disabilities, just as you do with other high-risk patients. Carefully assess each patients risk for deep vein thromoboembolism. Encourage and advise your patients on how to decrease their risk for thromoboembolismby quitting smoking, lowering their blood pressure, and developing nutrition and exercise regimens that promote a healthy weight.

Those patients who choose to take tamoxifen or raloxifene to lower their risk of breast cancer need to be followed closely. Counsel your patients to report any unusual bleeding. Such bleeding should prompt an appropriate endometrial evaluation. Some women with disabilities may not notice bleeding (those who are blind) or may not remember to report it (those with cognitive disabilities). These factors should be considered and discussed with the patient during the decision-making process concerning these treatments.Prophylactic mastectomy has been found to reduce the risk of breast cancer by about 90% in high-risk women.1 Most high-risk women who opt for the surgery report being satisfied with the decision, although they are less satisfied with the surgerys cosmetic results and with their postsurgery body image.2

Prophylactic mastectomy raises a special concern for women with disabilities. How will the surgery affect their existing mobility and quality of life?

1. Hartmann LC, et al. N Engl J Med. 1999;340:77-84.2. Lostumbo L, et al. Cochrane Database of Systematic Reviews. 2004;4:CD002748.Before surgery, have a full discussion with your patient about her adaptive and assistive needsand how surgery may affect those needs. Make sure the patient has made arrangements for sufficient home care after surgery.

Physical therapy should be started several weeks before surgery to limit any mastectomy-related loss of function. After surgery, physical therapy is essential to loosen scar tissue, which can restrict the patients range of motion in her arms, and to restore the bodys balance and symmetry. Therapy will also help relieve numbness and/or nerve pain at the surgical site.

Remember, even a minor loss of function can have an overwhelming impact on quality of life for women who already have limited mobility.

Its important to discuss modifiable breast cancer risk factors with your patients, particularly those at high-risk for breast cancer. Such risk factors include being overweight, not getting enough exercise, and consuming alcohol daily.

Women who were not overweight at age 18 but who were so at age 50 have been found to have 1.5 times the risk of developing breast cancer as women whose weight stayed steady throughout adulthood.1

Research has also shown that women who engage in the equivalent of 1.25 to 2.5 hours per week of brisk walking have an 18% decreased risk of breast cancer compared with sedentary women.2

In addition, studies have shown that although moderate use of alcohol can be good for the heart, drinking alcohol daily, even in relatively small amounts, raises the risk of breast cancer. One meta-analysis found a 7.2% increase in the relative risk for breast cancer with each 10 grams of alcohol consumed daily (the equivalent of about one drink). The risk seems greatest for postmenopausal women.3

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.

Due to a variety of physical and psychological barriers, women with disabilities may have more difficulty altering modifiable risks factors than women without disabilities.

A disability can make it difficult for a women to shop for and prepare healthy meals. In one survey of more than 1,000 women with disabilities,1 32% stated that they experienced barriers to good nutrition; of those, 90% wanted to improve their eating habits. Some of the most common barriers to eating well cited by the women surveyed are shown here.

1. Hall L, Colantonio A, Yoshida K. Int J of Rehabilitation Research. 2003;26:245-247.

A variety of disability-related barriers discourage women with disabilities from exercising regularly. These include a lack of transportation, money, and time; inaccessible fitness centers; healthcare and fitness professionals who are inexperienced with working with people with disabilities; and a lack of social support.

Fatigue, pain, and other health conditions may also interfere with their ability and desire to exercise more.1,2

Hughes RB. Family & Community Health. 2006;29:44S-51S. CROWD, Baylor College of Medicine. 2007. Available at www.bcm.edu/crowd/?pmid=1430.

In addition, women with disabilities may underestimate their own capabilities for exercise and may be unaware of the skills they need to develop to become physically active.1,2

Hughes RB. Family & Community Health. 2006;29:44S-51S. CROWD, Baylor College of Medicine. 2007. Available at www.bcm.edu/crowd/?pmid=1430.

There are few clinical guidelines available for counseling overweight, sedentary women with disabilities. Even determining weight can be problematic. Most medical clinics have standard weight scales that are unable to accommodate wheelchairs or other assistive devices, and body mass index (BMI) calculations fail to consider such factors as muscle atrophy or limb loss.

To help your patients with disabilities manage their weight, equip your facility with a weight scale that accommodates wheelchairs. You can also help your patients with disabilities better manage their weight by referring them to a dietician with experience addressing their unique dietary and exercise issues and concerns.

A great source of how-to information designed to help people with a wide range of disabilities become more physically active can be found at the National Center of Physical Activity and Disability (NCPAD) Web site. The site is fully accessible and has interactive tools that enable people to set goals and track their progress.Surveys have found that alcohol use is at least as prevalent among women with disabilities as among the general female population.1 So, when evaluating breast cancer risk, do not assume that your patients with disabilities do not drink alcohol. Ask them about their use of alcohol, as you do with all your patients.

If a woman is at high risk of developing breast cancer, discuss alcohols possible role as a risk factor. Use her risk profile for heart disease and breast cancer to help her weigh the benefits and risks of alcohol use.

For many moderate drinkers, alcohols protective effect against heart disease may outweigh the slightly increased risk of breast cancer.2 For women at high risk of breast cancer, however, the balancing of these two risks may lead to an entirely different decision.

1. Li L, Ford JA. Applied Behavioral Sci Rev. 1996;4:99-109.2. Collaborative Group on Hormonal Factors in Breast Cancer. Brit J of Cancer. 2002;87:1234-1245.

In summary:Although women with disabilities have, like all women, a one in eight lifetime chance of developing breast cancer, they are one-third more likely to die from the disease.The reason for this disparity in survival is unknown, but research has found that women with disabilities are less likely to undergo standard chemo and/or radiation therapy after breast-conserving surgery than other women. They are also less likely to undergo regular mammography screening.All women with disabilities should be assessed for their breast cancer risk and offered risk-reduction strategies, including increased surveillance, chemoprevention, and prophylactic surgery. These strategies raise special issues for women with disabilities. Be sure to have a full discussion with your patient about how these strategies may affect her adaptive and assistive needs. Help her arrange support systems, if needed.Women with disabilities often have more difficulty altering modifiable risks factors, such as becoming more physically active and maintaining a healthful weight, than women without disabilities. Familiarize yourself with the special tools and strategies that are available for helping women with disabilities adopt a more healthful lifestyle.

The following slides contain online and other breast cancerrelated resources for healthcare professionals who are providing care to women with disabilities.