Breast Cancer Navigation


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Sue Bowman, RN, OCN, CBCN, MSW
Leesa Mattingly, RN, OCN

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Breast Cancer Navigation

  1. 1. 5 Steps to Better Navigation: Breast Cancer Navigation Breakout Session <br />Sue Bowman, RN, OCN, CBCN, MSW<br />Breast Oncology Nurse Navigator<br />Wellspan Health, York Cancer Center<br />
  2. 2. About the speaker…<br />Breast oncology nurse for 16 years<br />Breast cancer survivor for 18 years <br />Breast cancer navigator for 9 years<br />Developed successful survivor programs<br />Published author <br />Conducting nursing research in breast cancer survivorship<br />Member of several breast oncology groups<br />Certified in oncology and breast cancer care by ONS<br />Enjoy being a navigator<br />
  3. 3. Breakout Session Topics <br />
  4. 4. What Is a Navigator ?<br />
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  6. 6. Translation – We Are “Cat Herders”<br />Cat Herding - Persuading a group of independently minded people to go in the same direction<br />
  7. 7. Dr. Harold Freeman<br /> “Navigators assure that individuals with cancer will receive timely diagnosis and treatment.”<br />
  8. 8. Dr. Allan GibofskyProfessor of Public Health Weill Cornell Medical College <br />“Breast cancer is a complex disease causing disruption in the physical, social, psychological, and spiritual aspects of caring. It is the role of the navigator to pave the way for these individuals to access the necessary information that will make the journey less fearful and more understandable.”<br />
  9. 9. Barrier-Focused Definition<br />Patient navigation is a barrier- focused intervention that has the following common characteristics:<br />Provided for a defined period of time<br />Has a start and end<br />Targets the specific set of health services required<br />Identifies barriers and reduces delays in accessing care<br />Sara Koslosky <br /> Inova Health Breast Care Nurse<br />
  10. 10. Is a Standardized Navigator Definition a Practical Goal?<br />
  11. 11. Actual Value of a Navigator<br />The true value of a successful navigator program is the ability to guide patients through the health system by removing barriers that prevent quality care. <br />
  12. 12. Critical Question #1<br />How does a navigator develop this ability to guide patients around or through barriers?<br />
  13. 13. Critical Question #2<br />How are barriers identified?<br />
  14. 14. Critical Question #3<br />How does a navigator resolve barriers?<br />
  15. 15. The answer is…<br />…something you have used your entire professional career<br />The Nursing Process Theory<br />Developed in 1961 by <br />Ida Jean Orlando<br /> Ida Orlando<br />
  16. 16. The Focus of the Nursing Process<br />The Patient <br />Improve care by addressing the most pressing need first<br />5-step process<br />
  17. 17. Things to Remember…<br />This is a new process<br />Use what you know works<br />Nurses and other navigators can use Orlando’s Nursing Process Theory to resolve patient barriers – successfully<br />Create your role and program to reflect your patients’ barriers<br />Keep your role fluid<br />Navigators have become important members of the oncology care team<br />Navigation is a difficult task at best<br />Nurse navigation is still developing <br />Start small <br />Be patient with yourself<br />
  18. 18. 5 Steps to Better Navigation:Using the Nursing Process<br />
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  34. 34. Key Point: Implementation is NOT only your responsibility. You are NOT a “Guardian Angel.” You are a facilitator. Your patient is responsible for doing what he or she is able to do. The goal is to complete recommended care, create a partnership, provide tools for growth, and support the healing process.<br />
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  41. 41. Applying the 5-Step Nursing Process Theory in Breast Cancer Navigation <br />Case Study<br />
  42. 42. How to Prepare for an Effective Initial Contact<br /><ul><li>Receive referral
  43. 43. Review medical record
  44. 44. Gather appropriate resource materials
  45. 45. Focus on rapport building
  46. 46. Use an assessment tool</li></li></ul><li>Assessment Tool<br />A comprehensive intake form includes:<br />Demographics & contact information<br />Medical history & provider information<br />Pathology results<br />Existing support systems<br />Medications & comorbidities<br />Social roles & responsibilities<br />Health maintenance routine<br />List of possible referrals<br />Worksheet format<br />
  47. 47. Elderly Case Study Mary: Physical Barriers<br />78 years old, post menopausal<br />Thoraco-lumbar stenosis<br />Arthritis<br />Osteoporosis<br />A-Fib<br />Cataracts & bilateral hearing aides<br />Thickness noted in left breast<br />Invasive lobular carcinoma, ER+, PR-, HER-2 -, 4 cm., 3 positive nodes, 1 micro-mets<br />
  48. 48. Case StudyMary: Emotional Barriers<br />Depression<br />Anxiety<br />Isolation<br />Spouse in long term care post recent CVA<br />Reluctant to ask for help<br />One son 200 miles away<br />Accustomed to being in control of <br /> her life experiences<br />
  49. 49. Case StudyMary: Support System Barriers<br />No living siblings<br />Spouse unavailable<br />Son & family not local<br />Attends Sunday church services<br />Lives alone in family home<br />Does not drive in “bad” weather or at night<br />Limited circle of friends<br />
  50. 50. Case StudyMary: Knowledge Barriers<br />Unaware of community resources, including cancer center<br />Incomplete understanding of medication use<br /> Impending information overload<br />No personal experience with breast cancer<br />No known family history <br />Unfamiliar with screening, treatment, disease, survivorship recommendations<br />Unaware of impact of treatment and <br />healing issues<br />
  51. 51. Case StudyMary: Financial Barriers<br />Car is 15 years old<br />Limited income <br />Medicare & supplement health coverage<br />Able to make ends meet at this time, no reserve<br />Sporadic grocery shopping <br />Ocassionally misses bill due dates<br />12 year old dog requires frequent vet appts<br />Home repair ignored<br />
  52. 52. Case StudyMary: Systemic Barriers<br />Complex medical system<br />Cottage industry of care<br />Treatment may require an escort<br />Provider communication relies on phone<br />Treatment may require travel in poor weather or when dark<br />
  53. 53. Elderly Case StudyMary: Personal Strengths & Resources<br />Resourceful<br />Determined<br />Frugal<br />Uses her small circle of contacts well<br />Willing to help herself<br />Enjoys learning new things<br />Reads and questions health care information<br />Asks questions on behalf of her spouse<br />
  54. 54. Use the 5-Step Nursing Process Theory to Develop an Effective Strategy<br />Assess<br />Nursing diagnosis<br />Plan <br />Implement<br />Evaluate<br />
  55. 55. Barrier Ball ActivityRemember the Nursing Process<br />Catch a Barrier Ball<br />Recruit people near to you to formulate a way to reduce that barrier<br />Take 2 minutes to develop your plan (Write it down)<br />Pick one person to come to the microphone, state barrier and how to reduce this barrier<br />
  56. 56. Transportation Barrier<br />
  57. 57. Possible Transportation Approaches<br />Ask patient for her ideas. <br />Neighbors<br />Public transportation programs<br />Church groups<br />Cancer center programs<br />American Cancer Society<br />Investigate hospital resources<br />Establish a list of resources for navigator use<br />
  58. 58. Financial Barriers<br />
  59. 59. Possible Financial Approaches<br />Ask her what help she needs first <br />Refer to financial counselor, if available<br />Contact local patient advocacy programs<br />Refer to food and clothing banks <br />Brainstorm with patient to find additional ways to economize <br />Free Medicaid cell phone program<br />Work with patient finance rep for available options<br />Explore providers’ willingness to waive fees<br />Pharmaceutical programs<br />National patient advocate programs<br />Establish a list of resources for your future use<br />Be sensitive to privacy issues<br />
  60. 60. Healthcare Barriers<br />
  61. 61. Possible Complex Healthcare Approaches<br />Offer to attend appointments for support, note taking, advocacy<br />Explain steps before they happen <br />Anticipate barriers<br />Provide verbal and written information in increments<br />Enlist help from PCP<br />Be available for questions and concerns<br />Collaboratively develop a way to be organized that matches her need<br />Be prepared to repeat information and present it in different ways<br />Establish a list of resources for your future use<br />
  62. 62. Psychosocial Barriers<br />
  63. 63. Possible Psychosocial Approaches<br />Establish rapport and positive regard<br />Explore adequate emotional support: counseling, medication<br />Offer social work services<br />Reinforce her strengths<br />Explore her current relationship with her spouse<br />Ask about provider gender preference <br />Social Work 101: “Meet the patient where she is” <br />Check your biases <br />
  64. 64. Remember the 5 Steps of the Nursing Process Theory for Better Navigation<br />Assess <br />Gather information<br />Use a tool<br />Nursing diagnosis<br />Identify individual and systemic barriers<br />Plan<br />Collaborative process<br />Baby steps; don’t expect perfection<br />Focus on personal strengths<br />Don’t promise what you can’t deliver<br />Be patient<br />Implement<br />“Assist” always; “do” only when your patient is unable<br />Encourage independence<br />Evaluate<br />Do YOU have a knowledge deficit relating to her specific barriers?<br />Do YOU have a comprehensive understanding of women’s developmental stages?<br />Evaluation never ends<br /> and results in continual reassessment<br />
  65. 65. The Multidisciplinary Navigation Team <br />
  66. 66. The Multidisciplinary Navigation Team<br />Nurses cannot do this alone<br />Remember the cat herders?<br />Multidisciplinary services are indicated for an optimal breast cancer experience<br />You already have a team of people available to provide these services<br />Volunteer vs paid employees<br />Virtual vs centrally located team<br />You can create a team<br />
  67. 67. Interdependence:Making a Cheeseburger<br />Independent Cheeseburgers<br />Raise the cattle<br />Butcher and grind the meat<br />Bake the rolls<br />Grow lettuce and tomato<br />Make cheese & age it<br />Grow trees, cut down, process for charcoal<br />Time needed: years<br />Interdependent Cheeseburgers<br />Go to the grocery store<br />Purchase hamburger, cheese, rolls, tomato, lettuce, charcoal, ketchup, mustard<br />Return home & prepare<br />Time needed: hours<br />
  68. 68. Team MembersNonclinical Patient Navigators<br />They can:<br />Listen<br />Access information<br />Connect to support<br />Encourage organization skill development<br />Address cultural & language barriers<br />They cannot:<br />Provide medical information<br />Give opinions about treatment<br />Give opinions of healthcare providers<br />Interfere with provider/patient relationship<br />
  69. 69. Team MembersFinancial Counselor<br />Locate Medicare, Medicaid programs <br />Organizational programs for support<br />Pharmaceutical programs<br />Guide to economize lifestyle<br />Assist with applications for services<br />May be able to organize fundraising<br />
  70. 70. Team MembersOncology Dietitians<br />Counsel healthy nutrition through treatment<br />Provide guidance for plant-based diet after treatment<br />Provide nutritional supplements and reassurance<br />Supply facts about alternative or unconventional diets<br />
  71. 71. Team MembersOncology Social Workers<br />Logical, essential, and necessary<br />Assist with disability, FMLA, Social Security, Medical Assistance<br />Connect to appropriate resources<br />Facilitate mental healthcare <br />Provide crisis intervention<br />Offer patient and family counseling<br />Provide support groups<br />Support other members of the navigation team<br />Psychosocial education<br />
  72. 72. Team Members;Other Potential Members<br />Research nurses<br />Clergy<br />Imaging personnel<br />Radiation, surgical, medical oncology<br />Complementary medicine providers<br />Physical & occupational therapists<br />Survivorship classes<br />Support groups<br />Community members<br />Others?<br />
  73. 73. The Puzzle of Assembling the Right Team Activity<br />In 5 minutes: <br />Find your color-coded puzzle piece<br />Read your patient comment or list of team members<br />Find the team member who matches your puzzle piece<br />Decide how your team will address this barrier<br />Can you add other resources or ideas?<br />3 teams may come to the microphone to share their barrier and describe team members’ actions<br />
  74. 74. Focus on Psychosocial Assessment<br />
  75. 75. Focus on Psychosocial Assessment<br />What is distress?<br />Any emotional issue which affects a person’s ability to <br />Cope with disease, treatment, survivorship<br />Make informed decisions<br />Follow recommended treatment<br />Breast cancer is a holistic experience<br />Distress is best managed by using the “onion analogy”<br />
  76. 76. Focus on Psychosocial Assessment<br />Why is this important?<br />33% of all patients experience significant emotional distress<br />5% obtain help<br />Breast cancer survivors: commonly experience distress which interferes with coping<br />Psychosocial assessment will be required for cancer center accreditation<br />Distress is one of the 3 most common barriers:<br />Insurance & out-of-pocket expense<br />Transportation<br />Fear & emotions<br />
  77. 77. Barriers Are Risk Factors for Distress <br />Low income<br />Less education<br />Unemployed<br />Young age<br />Hispanic ethnicity<br />Non-English speaking<br />Treatment side effects<br />Unstable support systems<br />Preexisting mental illness<br />Substance abuse<br />Role confusion<br />Endless number of perceived barriers<br />ALL people have barriers<br />
  78. 78. Focus on Psychosocial Assessment in Navigation: American College of Surgeons Commission on Cancer<br />Continuum of Care Services Standard 3.2<br />Screening of all patients for distress & psychosocial health needs<br />Provide referral, follow-up, and re-evaluation<br />Minimum of 1 screening per patient<br />Use of standardized tool<br />Documentation<br />General standards first published in 1930 to ensure quality cancer care<br />New standards September 2011<br />Voluntary accreditation includes patient care improvements & outcomes through a team approach<br />
  79. 79. Focus on Psychosocial Assessment in Navigation<br />Institute of Medicine: Cancer Care for the Whole Patient<br />Screen all patients<br />Referral to appropriate psychosocial services <br />Effective communication<br />Identify barriers<br />Design and implement a plan for care<br />Coordinate care & support patients<br />Reassess and adjust the plan of care<br />National Comprehensive Cancer Network<br /> “Distress should be recognized, monitored, and documented, and treated promptly at all stages of the disease”<br />Requires systemic follow-up<br />Reassessment<br />
  80. 80. Focus on Psychosocial Assessment<br />The basics of the IOM, NCCN, and ACoS recommendations sound a lot like Orlando’s Nursing Process Theory<br />
  81. 81. Nurse Navigator Initial Contact<br />Remember: Use the 5-step Nursing Process Theory<br />Be alert to the fluid nature of the process<br />Use an assessment tool and document your findings<br />Collaborate with your patient to develop a care plan<br />Mental illness or instability may be exacerbated with diagnosis<br />Self-report, observation, medication list<br />Further assessment is needed<br />Communicate with physician<br />Use the nursing process with frequent reassessment as tool for maintaining support<br />Refer to appropriate psychosocial support<br />Use recommendations from IOM, ACoS, NCCN to guide your plan<br />
  82. 82. Need for Assessment Is Evidence Based <br />Will be required by ACoS CoC Standard 3.2 by 2015 for accreditation<br />Research: Heilman & Lackey (1991), Kilpatrick et al (1998), Sanson et al (2000)<br />High levels of unmet needs (barriers) <br />Increase distress levels<br />Decrease coping abilities<br />Affect patient, family, caregivers, providers<br />Complicate family support, hope, and a sense <br /> of the future<br />
  83. 83. Mitchell (2010) Identified 6 Tools for Measuring Distress in Cancer Patients<br />Hospital Anxiety & Depression Scale<br />Distress Thermometer<br />Single verbal question<br />Psychological Distress Inventory<br />Combination Distress and Impact Thermometers<br />Two verbal questions<br />All tools comparable in accuracy<br />Never a substitute for clinical assessment or management<br />Choose a tool based on <br />Acceptability <br />Effectiveness<br />Cost<br />
  84. 84. Distress Thermometer<br />Easy to use<br />20 seconds to complete<br />Pencil & paper<br />Scale 1-10<br />High specificity and sensitivity<br />Provides specific areas of potential barrier for assessment<br /><br />
  85. 85. Conference Stress Gauge Activity<br />Find your Conference Stress Gauge <br />Take 1 minute to complete this tool <br />Share comments with the person next to you<br />Did this tool evaluate your current stress level accurately?<br />Could you use the NCCN Distress Thermometer for your patients?<br />
  86. 86. Best Practices in Navigation and Survivorship<br />
  87. 87. What Are “Best Practices”?<br />Best Practices are generally accepted, informally standardized techniques, methods or processes that have proven themselves over time to accomplish given tasks<br />Often based on common sense when no firm guidelines exist<br />Best practices continue to evolve as change occurs <br />
  88. 88. Why Are Best Practices Valuable?<br />Used to maintain quality<br />Used as an alternative to mandated, legislated standards<br />Based on self-assessment<br />Changeable and flexible <br />Important aspect of accreditation standards<br />
  89. 89. The key in adopting a best practice is being able to tailor it to your own organization’s needs<br />
  90. 90. Current Best Practice Resources<br />Design of Six Sigma (DFSS)<br />Business model for redesigning existing <br /> or new processes<br />Prioritizes customer (patient) needs<br />Formulates specifications<br />Integrates them into a program<br />Aligns customer (patient) needs with <br /> provider services<br />
  91. 91. Current Best Practice Resources<br />Association of Community Cancer Centers Patient Navigation Tool Kit (ACCC)<br />Articles<br />Templates<br />Assessment tools<br /><br />
  92. 92. Current Best Practice Resources<br />American College of Surgeons Commission on Cancer Standard Drafts <br />3.1 Patient Navigation<br />3.2 Psychosocial Distress Screening<br />3.3 Survivorship Care Plan<br /><br />
  93. 93. Current Best Practice Resources<br />Published navigation research or literature review articles <br />Professional organizations <br />Regional best practice<br />Classic best practice<br />Orlando’s 5-step nursing process theory<br />
  94. 94. Survivor Care Plans as a Best Practice<br />The number of survivors is rising<br />The number of medical oncologists is not<br />Primary care physicians may be responsible for cancer surveillance<br />Changes in breast cancer treatment occur often <br />Coordination of care is imperative<br />
  95. 95. Survivor Care Plans<br />What are they?<br />Useable documentation of treatment completed and plan for future<br />Comprehensive record of diagnosis and treatment<br />Patient-friendly and valuable to providers<br />Includes treating providers & contact information<br />Includes treatment identification, dose, duration, effects<br />Includes services used <br />Includes guidance for recovery and survivorship<br />Includes surveillance recommendations, health maintenance<br />Lifestyle changes <br />
  96. 96. National Community Cancer Centers Program (NCCCP) Survivor Care Plan<br />Four methods of care plan development<br />Cancer registry populates treatment summary<br />Nurse Practitioner led survivorship program using software for care plan<br />Survivorship Navigator completing treatment summary<br />Use online care plans such as:<br /><br /><br /><br />Survivor care plans will be required for ACoS CoC Accreditation 2015<br />
  97. 97. Successful Survivorship Program Initiation and Support<br />
  98. 98. Why Are Survivor Programs Important for Your Navigation Program?<br />Increasing number of cancer survivors requiring continuing care<br />Better treatment<br />Better follow-up<br />Better science<br />Better delivery<br />Better professional education<br />New phase in the cancer trajectory: Survivorship<br />Longer life<br />Patient demand<br />Extension of traditional treatment<br />Primary care physicians may not be familiar with late effects of diagnosis or treatment <br />
  99. 99. What Survivor Programs Are Right for Your Navigation Program?<br />Use the 5-step Nursing Process <br />Assess: Find out what is needed<br />Survey<br />Focus group<br />Interview patients & providers<br />Practicality <br />Cost<br />Shareholders<br />Nursing Diagnosis: Define needs in terms of patient barriers<br />Examples<br />Lack of adherence to hormonal therapy<br />Poor appointment follow-up<br />Fear about leaving active treatment<br />Other?<br />
  100. 100. What Survivor Programs Are Right for Your Navigation Program?<br />Plan: Develop an interactive, engaging way to educate patients, meeting the needs expressed<br />Content<br />Adult learning styles<br />Program providers, resources<br />Funding<br />Scope of practice<br />Specific goals<br />Team involvement<br />Implement: Time to practice<br />Try out your program ideas with an open mind<br />Know that some components will be successful, some will need revision<br />Build resource list<br />
  101. 101. What Survivor Programs Are Right for Your Navigation Program?<br />Evaluate: Look at your successes and failures<br />Keep a list of what went well and what didn’t<br />Develop a way to prove effectiveness of your program<br />Readjust your program to enhance effectiveness<br />Process is the key word<br />Programs are never finished; open to change<br />Make it fun for you and the people you serve<br />Ideas are limited only to your imagination and creativity<br />
  102. 102. Prescription for Living:Beyond Breast Cancer<br />What:<br />An 8-session interactive class for women who have been diagnosed and treated for breast cancer<br />Women’s Intervention Nutrition Study, Chlebowski (2006)<br />Nutrition<br />Physical activity<br />Stress reduction<br />Information<br />Taught by oncology dietitians, nurse navigator<br />Guest speakers include physician, navigation team members, community leaders<br />In place for 4 years<br />Adjustments made to reflect patient need<br />
  103. 103. Prescription for Living: Beyond Breast Cancer<br />Assess:<br />Focus group<br />Surveyed providers and patients<br />Secured support for referral from providers<br />Engaged pharmaceutical reps for funding<br />Applied for grants<br />Nursing diagnosis:<br />Asked providers what barriers patients encountered most often after treatment<br />Distilled that list to teachable vignettes, linking them with current research findings and recommendations<br />
  104. 104. Prescription for Living: Beyond Breast Cancer<br />Plan:<br />Reviewed adult learning preferences<br />Organized topics <br />Requested speaker commitment<br />Outlined course<br />Compiled supporting information<br />Developed Power Points<br />Considered learning experience to include many modalities<br />Purchased tools & books<br />Calorie King<br />ACS Healthy Eating<br />Contacted related organizations for patient handouts<br />Calcium Supplements<br />Vaginal lubricant<br />Lymphedema ID wristbands<br />
  105. 105. Prescription for Living: Beyond Breast Cancer<br />Implementation:<br />Offered first class in September 2007 <br />Two times: afternoon and evening<br />Spring and fall classes<br />90-minutes class<br />Provided instruction, demonstration, homework, and food tasting<br />Secured funding<br />Evaluation:<br />Pre- and post-class evaluation for participants<br />Evaluations per funding agreement <br />Feedback from providers<br />Feedback from speakers<br />Reassessment and program change<br />
  106. 106. Orlando’s Nursing Process Theory Is a Valuable Tool in Navigation Programs <br />Effective navigation is the nursing process<br />Know it and use it<br />The answer to navigation process development and success has been with us all along<br />
  107. 107. For questions or comments:<br /><br /> 717-741-8455<br /> With thanks and appreciation to:<br /> David Bowman - presentation development<br /> Tom Bowman - support and editing<br /> York Cancer Center for supervision and encouragement <br />
  108. 108. Breast Cancer NavigationChallenges Facing the Younger Breast Cancer Patient<br />Leesa Mattingly, RN, OCN<br />Breast Health Navigator<br />Norton Cancer Institute<br />
  109. 109. Norton Healthcare and The Norton Cancer Institute<br />Norton Healthcare is the largest provider of healthcare in Louisville, Kentucky, and the surrounding region with 5 acute care hospitals<br />Norton Cancer Institute is the only National Cancer Institute Community Cancer Center Program (NCCCP) in Kentucky<br />The goal of the Norton Cancer Institute is to create a community-based cancer center network to support research, increase access to care, and increase quality of care<br />
  110. 110. Norton Cancer InstituteResource Centers<br />The Norton Cancer Institute currently has 3 resource centers throughout the community for anyone touched by cancer<br />These centers are staffed Monday-Friday, <br /> 8:00 AM-4:30 PM, with Oncology Certified Nurses<br />Many of the services are offered at no cost to anyone in the community with a cancer diagnosis, caregiver, or family member<br />
  111. 111. Community Resources<br /><ul><li>Support groups
  112. 112. Education
  113. 113. Massage therapy
  114. 114. Art therapy
  115. 115. Music therapy
  116. 116. Behavioral oncology
  117. 117. Nutritional counseling
  118. 118. Transportation assistance
  119. 119. Free wigs/turbans
  120. 120. Look Good…Feel Better (LGFB) Program
  121. 121. Community Outreach/Screenings</li></li></ul><li>Navigation Program<br />3 Breast Health Navigators<br />1 Thoracic Navigator<br />1 Neuro Navigator<br />1 GI Cancer Navigator<br />1 Hepatic Arterial Navigator<br />4 Oncology Navigators<br />
  122. 122. What Is a Nurse Navigator?<br />An Oncology Certified Nurse who oversees the educational, emotional, and social needs of the patients and family members from point of suspicious finding through diagnosis, treatment, and into survivorship<br />Nurse navigators are specially trained to offer the latest information on prevention, early detection of cancer treatment options, and recovery concerns<br />
  123. 123. Norton Cancer Institute Breast Health Services<br />The multidisciplinary team includes:<br />Board Certified Breast Surgeons <br />Board Certified Reconstructive Surgeons<br />Medical and Radiation Oncologists<br />Genetic Counselors<br />Lymphedema Specialists<br />Oncology Certified Nurses<br />Nurse Navigators<br />Counselors<br />Behavioral Oncologists<br />Licensed Dietitians<br />Social Workers<br />Complementary Therapists <br />
  124. 124. Referrals<br />Physician referrals<br />Inpatient and outpatient<br />Surgery schedule<br />Community outreach/screenings<br />Reputation in the community<br />
  125. 125. Facts About Breast Cancer<br />Young women under age 45 can and do develop breast cancer. In the United States, about 10% of all breast cancer occurs in women under age 45 <br />24,000 women in the United States under age 45 are expected to be diagnosed with breast cancer this year (including in situ breast cancer) <br />More than 3000 will die<br />Breast cancer is the leading cause of cancer deaths in women under age 40 <br /> (<br />
  126. 126. History of the Young Survivors Support Group<br />In September 2006, a young women (M.S.) in our community was diagnosed with breast cancer at age 31<br />M.S. shared her story with the news media and her journey was also followed by our local paper<br />M.S. focused on “wanting to help other young women like myself”<br />
  127. 127. What Makes This Support Group Different?<br />Women aged 40 and younger when first diagnosed with breast cancer<br />Activities/support<br />Lunch/dinner<br />Social networking<br />Survivors willing to mentor a newly diagnosed woman, caregiver, or spouse<br />Family events<br />Young Survivors Coalition Annual Conference<br />
  128. 128. How Is It Funded?<br />Auction<br />Local football game<br />Donations<br />
  129. 129. Case Study 1: J.H.<br />J.H. was a 22-year-old college student when in 2008 she found a lump while performing breast self-examination (BSE)<br />Biopsy showed a G3 IDC of the right breast. ER-/PR+ Her-2/neu-<br />She and her mother arrived from the surgeon’s office for our first meeting together<br />
  130. 130. Assessment of Barriers/J.H.<br />Education<br />Finances<br />Physician appointments<br />Chemo<br />Fertility<br />Body image<br />Autonomy<br />Anxiety, fear, stress<br />
  131. 131. Education<br />Type of cancer, grade, prognostics<br />Mastectomy <br />Prophylactic mastectomy<br />Reconstruction<br />Lumpectomy<br />Radiation<br />Sentinel node biopsy<br />J.H. opted for a right mastectomy with left prophylactic mastectomy and immediate reconstruction with tissue expanders (TEs). Right sentinel node biopsy removed 6 nodes, all negative<br />
  132. 132. MD Appointments<br /><ul><li>Medical Oncologist - Chemotherapy
  133. 133. Dose-dense doxorubicin and cyclophosphamide times 4 cycles followed by docetaxel times 4 cycles
  134. 134. No hormone suppression
  135. 135. Reconstructive Surgeon
  136. 136. Immediate reconstruction with TEs
  137. 137. Fertility Specialist
  138. 138. No egg harvesting
  139. 139. Genetics
  140. 140. Mother negative for breast cancer, maternal grandmother with breast cancer at age 65
  141. 141. Father was adopted
  142. 142. Negative for BRCA I and II mutation</li></li></ul><li>Finances<br />College student living at home with parents<br />Covered by her father’s insurance<br />Leave of absence from school<br />Parents voiced some financial concerns<br />
  143. 143. Body Image<br />Bilateral mastectomy<br />Chemo<br />̵̵ Hair loss/wig, LGFB program<br />̵̵ Weight gain/dietitian, exercise and yoga<br />
  144. 144. Autonomy<br />J.H. is an adult of legal age living with her parents<br />HIPAA<br />Building trust<br />
  145. 145. Emotional Issues<br />Anxiety, fear, stress<br />Young Survivors Support Group<br />Behavioral oncology<br />Massage therapy<br />Friends/family<br />
  146. 146. Case Study 2: A.L.<br /><ul><li>In February 2009, A.L. found a lump in her right breast while performing BSE. This was 10 days after her 27th birthday and 8 months after her mother’s diagnosis with breast cancer
  147. 147. Biopsy showed IDC of the right breast. ER+/PR-Her-2/neu-
  148. 148. Married with no children. Works as a medical assistant in a physician’s office
  149. 149. Family history includes grandmother, mother (diagnosed at age 61), and several aunts with breast cancer</li></li></ul><li>Assessment of Barriers/A.L.<br />Education<br />Finance<br />Chemo<br />Physician appointments<br />Fertility<br />Body image<br />Anxiety, fear, stress, guilt, anger<br />
  150. 150. Education<br />Type of cancer, grade, prognostics<br />Mastectomy <br />Prophylactic mastectomy<br />Reconstruction<br />Lumpectomy<br />Radiation<br />Sentinel node biopsy<br />A.L. opted for right mastectomy with prophylactic left mastectomy and immediate reconstruction with TEs. Sentinel node biopsy removed 10 nodes, all negative <br />
  151. 151. MD Appointments<br />Medical Oncologist - Chemotherapy<br />Cyclophosphamide and docetaxel times 6 cycles<br />Oral antihormone agent<br />Reconstructive Surgeon<br />Immediate reconstruction with TEs<br />Fertility Specialist<br />Egg harvesting<br />Genetics<br />Negative for BRCA I and II mutation<br />
  152. 152. Finances<br />A.L. had to continue working during treatment. Fertility procedure was not covered by insurance<br />Med Assist<br />Co-Pay Relief<br />ACS<br />Fertile Hope<br />Transportation Assistance<br />
  153. 153. Body Image<br />Bilateral mastectomy<br />Chemo<br />Hair loss/wig, LGFB program<br />Weight gain/exercise and yoga<br />Hormone suppression<br />Decreased libido/behavioral oncology<br />
  154. 154. Emotional Concerns<br />Anxiety, fear, guilt, stress, anger<br />Young Survivors Support Group<br />Behavioral oncology<br />Massage therapy<br />Spouse<br />Family/friends<br />Church<br />Delay in pregnancy<br />
  155. 155. J.H. and A.L. Today<br />J.H. has completed treatment phase. She works part- time and attends college<br />A.L. has finished her chemotherapy treatment and breast reconstruction. She remains on an oral antihormonal medication. She is working full-time as a medical assistant in a physician’s office. A.L. is anxious to end treatment totally, so that she can pursue her lifelong dream of becoming a mother<br />
  156. 156. Quotes from a Young Survivor<br />“I joined the Young Survivors group and looked forward to the fellowship. I had other women who made me feel like what I was going through was normal, that I wasn’t alone.”<br />“As a young woman, I feel the dynamics of cancer affect us differently than that of the middle-aged population. Young Survivors have done a great job advocating for women diagnosed with breast cancer at a young age.”<br />
  157. 157. “EGGS FOR EGGS”<br />Alicia,<br />an employee of Internal Medicine and Pediatrics,<br />has just been diagnosed with breast cancer.<br />Within 3 weeks, she will be undergoing a double mastectomy.<br />As if that wasn’t bad enough,<br />Alicia is 27 years old.<br />The chemotherapy will more than likely make it impossible<br />For her to ever be a Mommy.<br />She was hoping to go through an Egg Harvesting procedure<br />Before her surgery,<br />but it will cost $12,000.<br />These ribbons were created out of love,<br />in hopes that we could help offset the costs.<br />Show your support,<br />and take a ribbon out of one of these special eggs.<br />We ask that you leave behind a pledge of support.<br />Whether it’s $1…<br />or $100…<br />We thank you for helping us<br />help Alicia<br />To fulfill what she ultimately wants…<br />To Be a Mom…<br />
  158. 158.
  159. 159. References<br />Facts about breast cancer, retrieved August 8, 2011, from<br />Norton Healthcare, retrieved August 8, 2011, from<br />