educational programs

1. Women with Disabilities educational programs

2. Prevention, Diagnosis, and Treatment of Breast Cancer in Women with Disabilities Part 3: Treatment, Rehabilitation, and Ongoing Care Women with Disabilities Education Project

3. Overview Part 1:Incidence and Risk Part 2:Screening and Diagnosis Part 3:Treatment, Rehabilitation, and Ongoing Care www.womenwithdisabilities.org

4. Treatment

5. LCIS 1. Observation after diagnostic biopsy 2. Tamoxifen to decrease the incidence of subsequent breast cancers 3. Bilateral prophylactic total mastectomy, without axillary node dissection 4. Clinical trials testing cancer prevention drugs DCIS 1. Breast-conserving surgery and radiation therapy with or without tamoxifen 2. Total mastectomy with or without tamoxifen 3. Breast-conserving surgery without radiation Treatment Options for Noninvasive Cancers1 1. National Cancer Institute. Available at www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page5.

6. Treatment Options for Early Breast Cancer (Stages I, II, IIIA, and Operable IIIC)1 Primary: • Breast-conserving surgery + lymph node dissection and radiation therapy • Modified radical mastectomy Adjuvant: • After surgery: radiation therapy • Systemic chemotherapy • Hormone therapy (tamoxifen, aromatase inhibitors) • Trastuzumab (Herceptin) + systemic chemotherapy 1. National Cancer Institute. Available at www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page5.

7. Hormone therapy Chemotherapy Surgery with lymph node dissection and radiation therapy Targeted therapies (e.g., lapatinib, trastuzumab (Herceptin), bevacizumab (Avastin)) Clinical trials testing new drugs/treatments Hormone therapy Chemotherapy Targeted therapies (e.g., lapatinib, trastuzumab (Herceptin), bevacizumab (Avastin)) Palliative radiation therapy and/or surgery Clinical trials testing new drugs/treatments Treatment Options for Stage IIIB, Inoperable Stage IIIC, Stage IV, Recurrent, and Metastatic Breast Cancer1 Stage IIIB and Inoperable Stage IIIC Stage IV and Metastatic 1. National Cancer Institute. Available at www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page5.

8. Disparities in Breast Cancer Treatment:Breast-Conserving Surgery + Radiation Therapy Women with Disabilities Were:1 20% less likely to receive breast-conserving surgery 19% less likely to receive lymph node dissection 17% less likely to receive adjuvant radiation therapy 29% more likely to die from the breast cancer 1. McCarthy et al. Ann Intern Med. 2006;145:637-645.

9. Disparities in Breast Cancer Treatment: Chemotherapy Chart Review:1 • Women with disabilities less likely to receive neoadjuvant chemotherapy compared to women without disabilities (13% of the time vs. 29% of the time), but • Difference was not statistically significant 1. Caban ME, et al. Cancer. 2002;94:1391-1396.

10. Making the Treatment Decision • Avoid assumptions • Discuss medical and logistical pros and cons of each treatment option

11. Determining Medical Decision-Making Capacity (Ability to Give Informed Consent) “So long as the patient appears to adequately understand and appreciate the personal significance of the following: • That she has a general medical or mental disorder, • The nature and course of the disorder, and • The risks and benefits of the proposed intervention and of the alternative, including the alternative of no intervention; and So long as the patient makes a non-coerced choice that does not appear to be unduly influenced by a mental disorder, then the patient may be considered to possess capacity even if her choice appears to the physician to be unreasonable.”1 1. Moore RF. Medscape General Medicine. 1999;1(3).

12. Resources for Determining Ability to Give Informed Consent • State medical associations • National Association of Developmental Disability Councils: www.nacdd.org • Assessment tools for women with limited verbal skills: • Hopkins Competency Assessment Test • Competency Interview Schedule • MacArthur Competence Assessment Tool

13. Special Concerns:Surgery • How will surgery affect the patient’s disability and quality of life? • What are the patient’s current assistive and adaptive needs, and how will surgery affect those needs?

14. Overcoming Surgical Barriers • Anticipate and plan for any special needs that the patient might require during the surgery itself • Make sure patient will have assistance after the operation • Make sure patient has transportation to the surgery and to post-op medical appointments • Consider sending patient to a PT or OT consultation before surgery

15. Special Concerns: Radiation Therapy • Is patient physically able to lie still and abduct arm for treatment? • Will patient have daily transportation to and from radiation therapy facility? • Will patient have necessary level of home care to address medical and daily living side effects of radiation therapy?

16. Overcoming Barriers to Radiation Therapy • Anticipate transportation and other access barriers; make sure these issues are resolved before patient shows up for treatment • Consider shorter treatment course

17. Special Concerns: Chemotherapy Will patient have necessary level of home care to address medical and daily living side effects of chemotherapy? Possible Side Effects

18. Special Concerns: Chemotherapy • Fatigue: May severely limit mobility for women with existing mobility limitations • Increase in Urine Output: May cause significant problem for women with existing continence problem • Bone Loss: Increases osteoporosis risk for women already at increased risk Side Effects Pose Potentially Debilitating Consequences for Women with Disabilities:

19. Special Concerns:Hormone Therapy Will patient have necessary level of home care to address medical and daily living side effects of hormone therapy? Possible Side Effects: Tamoxifen/Raloxifene

20. Special Concerns:Hormone Therapy Aromatase Inhibitors: • Increased risk of bone loss and fractures • Consider adjuvant use of bisphosphonates

21. Overcoming Barriers to Chemotherapy and Hormone Therapy • Ensure full patient participation in treatment decisions • Tailor treatment based on side effect and risk profile • Identify and address patient’s needs before treatment begins • Increase home nurse visits, if needed • Monitor patient’s bone density and evaluate treatments to attenuate bone loss • Instruct patient on symptoms of thromboembolism

22. Support Patient During Treatment • Identify barriers to care • Identify resources to overcome those barriers • Prepare patient for possible side effects and their impact on her daily activities • Make sure she will have the proper assistance to deal with those side effects • Coordinate care with other specialists • Have a system in place that enables you and your patient to communicate easily throughout the treatment process • Ask patient if she would like to include a friend or family member in her care

23. Rehabilitation

24. Rehabilitation Strategies • Treat related diagnoses that increase the disability • Treat unrelated diagnoses that increase the disability • Manage pain • Improve fatigue • Increase strength and cardiovascular fitness • Prescribe adaptive equipment

25. Treat Related Diagnoses: Lymphedema • Symptoms • Swelling, aching, tightness in arm • Hardening/thickening of skin • Restricted range of motion • May lead to cellulitis • 6%–30% of survivors self-report lymphedema symptoms1 • Symptoms may develop up to 20 years after initial treatment2 • National Cancer Institute. NCI Cancer Bulletin. 2007;4:5-6. • Petrek JA, et al. Cancer. 2001;92:1368-1377.

26. Complete Decongestive Physiotherapy • Manual lymphatic massage • Inelastic compression bandaging • Remedial exercises • Meticulous skin care

27. Treat Related Diagnoses:Rotator Cuff Tendinitis • Common disorder among breast cancer patients1 • Results from weakness of the rotator cuff musculature • Radiation therapy and chemotherapy contributeto the disorder • Associated with lymphedema2 • Stubblefield MD, Custodio CM. Arch Phys Med Rehabil. 2006;S96-S99. • Herrera JE, Stubblefield MD. Arch Phys Med Rehabil. 2004:85:1939-1942.

28. Treating Rotator Cuff Tendinitis • Stretches and range-of-motion exercises to increase flexibility • Exercises to stabilize shoulder

29. Treat Related Diagnoses:Overuse Injuries on Unaffected Side • Women with disabilities are at increased risk of overuse injuries • Risk increases after cancer treatment

30. Treating Overuse Injuries • Early and aggressive physical therapy is essential • Patient should be evaluated for adaptive equipment and/or assistive devices

31. Treat Related Diagnoses: Neck Pain • Second most common musculoskeletal condition among women • After breast cancer treatment, deconditioning increases risk

32. Treating Neck Pain • Restore range of motion • Maintain/improve upper body strength

33. Treat Unrelated Diagnoses That Increase the Disability • Treat early • Treat aggressively To Avoid Diminished Function:

34. Manage Pain • Treatment goals • Ameliorate pain • Maintain optimal function • Closely follow patient for detrimental side effects of medication • Refer patient to PT and/or OT • Integrative treatments (e.g., acupuncture) may help

35. Improve Fatigue Possible Causes of Fatigue in Women: • Inadequate sleep • Side effects from medications • Depression • Anemia • Thyroid illness • Poor nutrition • Deconditioning

36. Exercise Improves:1 Quality of life Cardiorespiratory fitness Physical functioning Fatigue Exercise May Improve:2 Breast cancer survival Greatest benefit: Walking 3–5 hours per week at average pace (or equivalent) Increase Cardiovascular Fitness • McNeely ML, et al. CMAJ. 2006:175:34-41. • Holmes MD, et al. JAMA. 2005;293:2479-2486.

37. Increase Muscle Strength Twice Weekly Strength Training: • Improves quality of life1 • Increases muscle mass2 • Reduces body fat2 • Reduces IGF-II levels2 • Ohira T, et al. Cancer. 2006;106:2076-2083. • Schmitz KH et al. Cancer Epidemiol Biomarkers Prev. 2005;14:1672-1680.

38. National Center on Physical Activity and Disability www.ncpad.org

39. Prescribe Appropriate Adaptive Equipment • The choice of equipment should involve patient, medical team, and PT/OT • An assessment should be made of woman’s needs at home and at work The Alliance for Technology Access www.ataccess.org

40. Ongoing Care

41. Goals of Regular Follow-up Visits • Find local or distant recurrence of cancer • Find any new breast tumors that have developed • Find any treatment-related side effects (e.g, lymphedema, bone loss, cardiovascular problems) • Identify effects of the disease and its treatment on the patient’s disability and quality of life

42. Recommendations for Follow-up Care for Breast Cancer1 • Khatcheressian JL, et al. J Clin Oncology 2006;24:5091-5097.

43. Work Collaboratively • Ask questions • Anticipate problems • Create solutions • Have mechanism in place to alert you if the patient does not return for follow-up within recommended interval

44. Create a “Teachable Moment” • Provide information on healthy behaviors • Ascertain if patient needs help with depression or other mental health issue • If applicable, discuss the option of a genetics referral

45. Summary • Breast cancer treatment poses added practical issues for women with disabilities. • Present all the medical and logistical pros and cons of treatment options to your patients with disabilities. • Know state laws regarding informed consent. • Discuss with your patients with disabilities how treatment may affect their adaptive and assistive needs. Help arrange support services to meet those needs.

46. Summary (continued) • Tailor each woman’s treatment to minimize its effect on worsening the patient’s existing disability. • Refer the patient to physical and/or occupational therapy before her treatment starts. • During follow-up care, identify and address the effect that the cancer and its treatment has had on the woman’s disability. • Make sure the patient’s follow-up plan addresses how she will access and/or receive the care. Have a mechanism in place to alert your clinic or office if the patient does not return within the recommended interval.

47. Resources

48. 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/

49. 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.cms.komen.org Women with DisabilitiesCenters for Disease Control and Preventionwww.cdc.gov/ncbddd/women

50. References 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.