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educational programs

prevention diagnosis and treatment of breast cancer in women with disabilities

Prevention, Diagnosis, and Treatment of Breast Cancer in Women with Disabilities

Part 3: Treatment, Rehabilitation, and Ongoing Care

Women with Disabilities Education Project


Part 1:Incidence and Risk

Part 2:Screening and Diagnosis

Part 3:Treatment, Rehabilitation, and Ongoing Care

treatment options for noninvasive cancers 1

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


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

treatment options for early breast cancer stages i ii iiia and operable iiic 1
Treatment Options for Early Breast Cancer (Stages I, II, IIIA, and Operable IIIC)1


  • Breast-conserving surgery + lymph node dissection and radiation therapy
  • Modified radical mastectomy


  • After surgery: radiation therapy
  • Systemic chemotherapy
  • Hormone therapy (tamoxifen, aromatase inhibitors)
  • Trastuzumab (Herceptin) + systemic chemotherapy

1. National Cancer Institute. Available at

Hormone therapy


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


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

disparities in breast cancer treatment breast conserving surgery radiation therapy
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.

disparities in breast cancer treatment chemotherapy
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.

making the treatment decision
Making the Treatment Decision
  • Avoid assumptions
  • Discuss medical and logistical pros and cons of each treatment option
determining medical decision making capacity ability to give informed consent
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).

resources for determining ability to give informed consent
Resources for Determining Ability to Give Informed Consent
  • State medical associations
  • National Association of Developmental Disability Councils:
  • Assessment tools for women with limited verbal skills:
    • Hopkins Competency Assessment Test
    • Competency Interview Schedule
    • MacArthur Competence Assessment Tool
special concerns surgery
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?
overcoming surgical barriers
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
special concerns radiation therapy
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?
overcoming barriers to radiation therapy
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
special concerns chemotherapy
Special Concerns: Chemotherapy

Will patient have necessary level of home care to address medical and daily living side effects of chemotherapy?

Possible Side Effects

special concerns chemotherapy18
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:

special concerns hormone therapy
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

special concerns hormone therapy20
Special Concerns:Hormone Therapy

Aromatase Inhibitors:

  • Increased risk of bone loss and fractures
  • Consider adjuvant use of bisphosphonates
overcoming barriers to chemotherapy and hormone therapy
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
support patient during treatment
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
rehabilitation strategies
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
treat related diagnoses lymphedema
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.
complete decongestive physiotherapy
Complete Decongestive Physiotherapy
  • Manual lymphatic massage
  • Inelastic compression bandaging
  • Remedial exercises
  • Meticulous skin care
treat related diagnoses rotator cuff tendinitis
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.
treating rotator cuff tendinitis
Treating Rotator Cuff Tendinitis
  • Stretches and range-of-motion exercises to increase flexibility
  • Exercises to stabilize shoulder
treat related diagnoses overuse injuries on unaffected side
Treat Related Diagnoses:Overuse Injuries on Unaffected Side
  • Women with disabilities are at increased risk of overuse injuries
  • Risk increases after cancer treatment
treating overuse injuries
Treating Overuse Injuries
  • Early and aggressive physical therapy is essential
  • Patient should be evaluated for adaptive equipment and/or assistive devices
treat related diagnoses neck pain
Treat Related Diagnoses: Neck Pain
  • Second most common musculoskeletal condition among women
  • After breast cancer treatment, deconditioning increases risk
treating neck pain
Treating Neck Pain
  • Restore range of motion
  • Maintain/improve upper body strength
treat unrelated diagnoses that increase the disability
Treat Unrelated Diagnoses That Increase the Disability
  • Treat early
  • Treat aggressively

To Avoid Diminished Function:

manage pain
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
improve fatigue
Improve Fatigue

Possible Causes of Fatigue in Women:

  • Inadequate sleep
  • Side effects from medications
  • Depression
  • Anemia
  • Thyroid illness
  • Poor nutrition
  • Deconditioning
increase cardiovascular fitness
Exercise Improves:1

Quality of life

Cardiorespiratory fitness

Physical functioning


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.
increase muscle strength
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.
prescribe appropriate adaptive equipment
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

goals of regular follow up visits
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
recommendations for follow up care for breast cancer 1
Recommendations for Follow-up Care for Breast Cancer1
  • Khatcheressian JL, et al. J Clin Oncology 2006;24:5091-5097.
work collaboratively
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
create a teachable moment
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
  • 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.
summary continued
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.

Breast Health Access for Women with Disabilities (BHAWD)Call: 512-204-4866TDD:

Center for Research on Women with Disabilities (CROWD)Baylor College of MedicineCall:

Health Promotion for Women with DisabilitiesVillanova University College of NursingCall:

Magee-Women’s Foundation“Strength & Courage Exercise DVD” (a compilation of exercises helpful to breast cancer patients)


National Breast and Cervical Cancer Early Detection ProgramCenters for Disease Control and PreventionCall: 1-800-CDC-INFOTTY:

National Center of Physical Activity and DisabilityCall: 1-800-900-8086TTY:

The National Women’s Health Information CenterCall: 1-800-994-9662TDD:

Susan G. Komen for the

Women with DisabilitiesCenters for Disease Control and


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