with
educational programs

Part 1: Incidence and Risk
Women with Disabilities Education Project

Incidence and Risk
Screening and Diagnosis
Treatment, Rehabilitation, and Ongoing Care

Breast Cancer in the United States:
 182,000 new cases diagnosed annually 1
 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.

Breast Cancer in the United States:
  24% since 1990 1
 Claims
40,000 women’s lives annually
 Second-leading cause of cancer-related death in
American women 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.

.
1
8
1
1. American Cancer Society. Breast Cancer Facts & Figures 2007-2008.

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

 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 mammograms 2
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.

A Person Has a Disability if He or She:
 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 impairment 1
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-today 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.

 Individual problem
 Directly caused by disease
 Does not reside in individual
 Created by environmental barriers



Avoid
The handicapped
Mentally ill person
Stroke victim
Person confined to a wheelchair; wheelchairbound
Able bodied
Use Instead
People with (who have) disabilities
Person with a mental illness
Person who had a stroke
Person who uses a wheelchair
Nondisabled

 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

 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

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

Encourages Women to:
 Have more rigorous screening
 Be counseled about preventive therapies
Assessment Tools:

Epidemiologic risk-assessment models (e.g., Gail model)
 Genetic testing

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.

NCI’s Breast Cancer Risk
Assessment Tool: www.cancer.gov/bcrisktool

 May predict risk more accurately than family history alone 1
 5% –10% of women who develop breast cancer have BRCA gene mutations 1
 Women with BRCA mutations have lifetime risk of 1
– Up to 85% for breast cancer
– Up to 60% for ovarian cancer
 BRCA carriers at highest risk have family history of 2
– Breast cancer diagnosis ≤ age 35
– Contralateral breast cancer
1.
2.
Myers MF, et al. Genetics in Medicine . 2006;8:361-370.
Begg CB, et al. JAMA.
2008;299:194-201.

 Increased surveillance
– Clinical breast exam
– Mammography
– MRI
 Chemoprevention
– Tamoxifen
– Raloxifene
 Prophylactic surgery

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

 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

 Reduces breast cancer risk by 90% in high-risk women 1
 Most high-risk women report satisfaction with decision to have the surgery 2
 Patient satisfaction is more variable regarding cosmetic results and body image 2
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.

 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

 Being overweight
– Women overweight at age 50:
50% increase in risk 1
 Not getting enough exercise
– 1.25–2.5 hours of brisk walking:
18% decrease in risk 2
 Consuming alcohol daily
– Each 10 g of daily alcohol: 7.2% increase in risk 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.

*
Barriers
Too tired to cook
Organic foods/health foods too expensive
Nutritious foods too expensive
Lack of desire or will power
Government disability pension is not enough
Too hard to go shopping
Not enough attendant time to shop/prepare food
Local food stores too expensive
Too busy
Difficulty chewing and swallowing fruit and vegetables
Not enough assistance with shopping
Local food stores not physically accessible
Food bank does not provide adequate source for food
Nutritional information not available in alternate formats
Attendant does not have enough time to help with feeding
Other
Frequency
61
49
39
90
76
69
62
194
125
124
113
110
34
21
3
47
Percentage
25.1
21.2
19.2
17.3
17.0
13.6
10.8
54.6
34.8
34.5
31.5
30.6
9.5
5.8
0.8
13.1
* 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.

 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

 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

 Alcohol use is as prevalent among women with disabilities as among the general female population 1
 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.

 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

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/crowd
Health Promotion for Women with Disabilities
Villanova University College of Nursing
Call: 610-519-6828 www.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 Program
Centers for Disease Control and Prevention
Call: 1-800-CDC-INFO
TTY: 1-888-232-6348 www.cdc.gov/cancer/nbccedp
National Center of Physical Activity and Disability
Call: 1-800-900-8086
TTY: 1-800-900-8086 www.ncpad.org
The National Women’s Health Information Center
Call: 1-800-994-9662
TDD: 1-888-220-5446 www.4women.gov/wwd
Susan G. Komen for the Cure www.komen.org
Women with Disabilities
Centers for Disease Control and Prevention www.cdc.gov/ncbddd/women

Ahmedin 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 provider’s 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 cancer —collaborative 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 behaviors —weight 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-toconsumer 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 General’s 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.