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
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:
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
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 Possible Side Effects Will patient have necessary level of home care to address medical and daily living side effects of chemotherapy? Fatigue Sexual dysfunction Heart failure Weight gain Fatigue Neuropathy Mucositis Cognitive impairment Alopecia Bone loss Myelosuppression/Infection Premature menopause Vomiting Heart failure Nausea Long-Term Short-Term
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 Possible Side Effects: Tamoxifen/Raloxifene Will patient have necessary level of home care to address medical and daily living side effects of hormone therapy? Increased risk of thromboembolism Headaches Loss of appetite/weight gain Skin rash Vaginal dryness or itching Irregular menstrual periods Vaginal spotting Nausea and vomiting
Special Concerns: Hormone Therapy
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
Treat related diagnoses that increase the disability
Treat unrelated diagnoses that increase the disability
Increase strength and cardiovascular fitness
Prescribe adaptive equipment
Treat Related Diagnoses: Lymphedema
Swelling, aching, tightness in arm
Hardening/thickening of skin
Restricted range of motion
May lead to cellulitis
6%–30% of survivors self-report lymphedema symptoms 1
Symptoms may develop up to 20 years after initial treatment 2
National Cancer Institute. NCI Cancer Bulletin . 2007;4:5-6.
Petrek JA, et al. Cancer. 2001;92:1368-1377.
Complete Decongestive Physiotherapy
Manual lymphatic massage
Inelastic compression bandaging
Meticulous skin care
Treat Related Diagnoses: Rotator Cuff Tendinitis
Common disorder among breast cancer patients 1
Results from weakness of the rotator cuff musculature
Radiation therapy and chemotherapy contribute to the disorder
Associated with lymphedema 2
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
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
To Avoid Diminished Function:
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
Possible Causes of Fatigue in Women:
Side effects from medications
Increase Cardiovascular Fitness
Exercise Improves: 1
Quality of life
Exercise May Improve: 2
Breast cancer survival
Greatest benefit: Walking 3–5 hours per week at average pace (or equivalent)
McNeely ML, et al. CMAJ. 2006:175:34-41.
Holmes MD, et al. JAMA. 2005;293:2479-2486.
Increase Muscle Strength
Twice Weekly Strength Training:
Improves quality of life 1
Increases muscle mass 2
Reduces body fat 2
Reduces IGF-II levels 2
Ohira T, et al. Cancer . 2006;106:2076-2083.
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
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
Khatcheressian JL, et al. J Clin Oncology 2006;24:5091-5097.
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
Genetic Counseling Referral 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. Coordination of Care Continue to visit a gynecologist regularly. Women taking tamoxifen should report any vaginal bleeding to their doctor. Pelvic Examination Perform a breast self-examination every month. This procedure is not a substitute for a mammogram. Breast Self-Examination 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. Post-Treatment Mammography 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 Medical History and Physical Examination Recommendation Follow-up Care Test
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
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.
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: 512-204-4866 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.cms.komen.org Women with Disabilities Centers for Disease Control and Prevention www. cdc . gov / ncbddd /women
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