educational programs

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

Overview

Part 1:Incidence and Risk

Part 2:Screening and Diagnosis

Part 3:Treatment, Rehabilitation, and Ongoing Care

www.womenwithdisabilities.org

Treatment

Treatment Options for Noninvasive Cancers1

LCIS1. 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

DCIS1. Breast-conserving surgery

and radiation therapy with or without tamoxifen

2. Total mastectomy with or without tamoxifen

3. Breast-conserving surgery without radiation

1. National Cancer Institute. Available at www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page5.

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.

Treatment Options for Stage IIIB, Inoperable Stage IIIC, Stage IV, Recurrent, and Metastatic Breast Cancer1

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

1. National Cancer Institute. Available at www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page5.

Stage IIIB and Inoperable Stage IIIC Stage IV and Metastatic

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

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

Avoid assumptions

Discuss medical and logistical pros and cons of each treatment option

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:

a) That she has a general medical or mental disorder,

b) The nature and course of the disorder, and

c) 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

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

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

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

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

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

Short-Term Long-TermNausea Heart failure

Vomiting Premature menopause

Myelosuppression/Infection Bone loss

Alopecia Cognitive impairment

Mucositis Neuropathy

Fatigue Weight gain

Heart failure Sexual dysfunction

Fatigue

Possible Side Effects

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

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

Nausea and vomiting

Vaginal spotting

Irregular menstrual periods

Vaginal dryness or itching

Skin rash

Loss of appetite/weight gain

Headaches

Increased risk of thromboembolism

Possible Side Effects: Tamoxifen/Raloxifene

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

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

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

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

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

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

1. National Cancer Institute. NCI Cancer Bulletin. 2007;4:5-6.2. Petrek JA, et al. Cancer. 2001;92:1368-1377.

Complete Decongestive Physiotherapy

Manual lymphatic massage

Inelastic compression bandaging

Remedial exercises

Meticulous skin care

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

1. Stubblefield MD, Custodio CM. Arch Phys Med Rehabil. 2006;S96-S99.2. Herrera JE, Stubblefield MD. Arch Phys Med Rehabil. 2004:85:1939-1942.

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

Women with disabilities are at increased risk of overuse injuries

Risk increases after cancer treatment

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

Second most common musculoskeletal condition among women

After breast cancer treatment, deconditioning increases risk

Treating Neck Pain

Restore range of motion

Maintain/improve upper body strength

Treat Unrelated Diagnoses That Increase the Disability

Treat early

Treat aggressively

To Avoid Diminished Function:

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

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

Fatigue

Exercise May Improve:2

Breast cancer survival

Greatest benefit: Walking 3–5 hours per week at average pace (or equivalent)

1. McNeely ML, et al. CMAJ. 2006:175:34-41.2. Holmes MD, et al. JAMA. 2005;293:2479-2486.

Increase Muscle Strength

Twice Weekly Strength Training:

Improves quality of life1

Increases muscle mass2

Reduces body fat2

Reduces IGF-II levels2

1.Ohira T, et al. Cancer. 2006;106:2076-2083.2.Schmitz KH et al. Cancer Epidemiol Biomarkers Prev. 2005;14:1672-1680.

www.ncpad.org

National Center on Physical Activity and Disability

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

www.ataccess.org

The Alliance for Technology Access

Ongoing Care

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 Cancer1

1.Khatcheressian JL, et al. J Clin Oncology 2006;24:5091-5097.

Follow-up Care Test Recommendation

Medical History and Physical Examination

Visit your doctor every three to six months for the first three years after the first treatment, every six to 12 months for years four and five and every year thereafter

Post-Treatment Mammography

Schedule a mammogram one year after your first mammogram that led to diagnosis, but no earlier than six months after radiation therapy. Obtain a mammogram every six to 12 months thereafter.

Breast Self-Examination

Perform a breast self-examination every month. This procedure is not a substitute for a mammogram.

Pelvic Examination Continue to visit a gynecologist regularly. Women taking tamoxifen should report any vaginal bleeding to their doctor.

Coordination of Care About a year after diagnosis, you may continue to visit your oncologist or transfer your care to a primary care doctor. Women receiving hormone therapy should talk with their oncologist about how often to schedule follow-up visits for re-evaluation of their treatment.

Genetic Counseling Referral

Tell your doctor if there is a history of cancer in your family. The following risk factors may indicate that breast cancer could run in the family:

Ashkenazi Jewish heritage Personal or family history of ovarian cancer Any first-degree relative (mother, sister, daughter) diagnosed with breast cancer before age 50 Two or more first-degree or second-degree relatives (grandparent, aunt, uncle) diagnosed with

breast cancer Personal or family history of breast cancer in both breasts History of breast cancer in male relative

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”

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

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.

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.

Resources

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

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

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

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

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

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

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

Susan G. Komen for the Curewww.cms.komen.org

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

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