Communicating Title with Your Healthcare Team to Get the Care You Want. Click to edit Master text styles

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1 Communicating Title with Your Healthcare Team to Get the Care You Want Click to edit Master text styles

2 Lori Ranallo, Title RN, MSN, ARNP-BC, CBCN Click to edit Master text styles Breast Cancer Nurse Practitioner University of Kansas Cancer Center 2

3 The Bottom Title Line Click - Over to edit 234,000 Master new text cases styles of breast cancer will be diagnosed in Over 44,000 women are expected to die from the disease in Breast cancer is the most common cancer in women - Ranks 2 nd as a cause of cancer death in women (after lung) 3

4 The Bottom Title Line Click - According to edit Master to the ACS text styles and the NCI estimates that there are 14.5 million cancer survivors living in the US today - Breast cancer survivors are the largest group of cancer survivors (22%) - Survival is related to stage: - Stage III 75% - Stage IV 22% 4

5 The Bottom Title Line Click - Due to to edit the Master development text styles of targeted therapies, the number of women living with metastatic breast cancer has increased significantly. - There are currently more than 155,000 Americans living with metastatic breast cancer (ACS, 2014) - Approximately 6% of the newly diagnosed breast cancer cases will be metastatic at initial presentation (ACS, 2014) 5

6 What is metastatic Title disease? Click - Breast to edit cancer Master that text has styles escaped the breast and or lymph nodes and traveled to other parts of the body is called metastatic disease. - If the cancer is in the lungs it is not lung cancer but metastatic breast cancer to the lung. - Metastatic breast cancer is not curable, but often treatable for an extended time. - New therapies are being discovered that target certain features of the tumor. 6

7 Metastatic disease Title what now? Click to edit Master text styles Empowerment: - According to the Webster dictionary: 1. the giving or delegation of power or authority; authorization 2. the giving of an ability; enablement or permission How do I maintain control and participate in the decision making process? 7

8 Participation: Title - Active communication regarding goals, treatment options, clinical trials and expectations is essential Click to edit Master text styles between the patient and HCP - Choosing the right facility - Choosing the right doctor - Family/friends - Support groups - Religious/social groups - Volunteer 8

9 Active Communication Title Click - Realistic to edit goals Master (short text styles term and long term). Discuss these openly with your health care team. - Write down questions to help guide your appointment and to focus on what is important to you. - Inquire about next steps..clinical trials, palliative or hospice care. - Expectations try to include caregivers so that they can participate in the discussion. 9

10 Choosing the Title right facility Click to edit Master text styles - Is your facility NCI designated? - Are your providers experts in the field? - Will you have access to clinical trials? - Is the facility close to home? If not, are there transportation issues? - Does the facility offer a multi-disciplinary approach to care? - Does your HCP have access to the newest technology? 10

11 Choosing the Title right doctor Click - Inquire to edit about Master education, text styles training and experience you are interviewing him/her for an important job. - How many patients with metastatic breast cancer has the physician treated? - Does the physician take time to explain treatment, goals and options? - Do you trust him/her? - Do you need to seek a second opinion? 11

12 Family/Friends Title Click - Learn to edit to express Master your text wants styles or needs how can they help you? - Be specific about tasks/jobs they can do. - Encourage your friends, family to participate in your care; attend appointments, take notes, ask questions (if you want them to). - Encourage your family/friends to participate in support groups for caregivers; this may offer comfort and allow for them to share their fears and/or anger in a safe and controlled environment. 12

13 Support Title groups Click - Offers to edit an opportunity Master text to styles share your story. - Some people feel that support groups provide a safe haven for talking about fears, frustration without putting a burden on their loved ones. - May improve mood and the perception of pain (Goodwin, 2001). - Be cautious - occasionally these groups will bring more distress into the situation. - Inquire about support services available at your facility or in your community (ACS, Komen, LBBC). 13

14 Religion/volunteer Title Click - Reflection to edit Master Spiritual text discovery; styles talking with clergy. - Self awareness What have I done and what do I want to do? - Finding a purpose Is there unfinished business, or goals to meet? - Giving to others Altruistic fulfillment by volunteering or becoming a mentor to others. - Sharing your story Some patients will prepare for special moments by writing cards or buying gifts for special events (graduation, birthdays, weddings). 14

15 What do patients want from their HCP s? Title Click - Rural to edit survivors, Master regardless text styles of stage at diagnosis, reported needing more education about breast cancer and more emotional support after diagnosis despite fear and recurrence (Wilson, 2000). - Patients desire a discussion with their providers regarding weight management, despite stage of disease. Self reported psychosocial factors associated with weight gain since diagnosis included depression, diminished physical strength, body image concerns, relationship changes, and financial stressors (Befort, 2011). 15

16 What do patients want from their HCP s? Title Click - Women to edit with Master advanced text breast styles cancer report physical changes, role and social functioning, poor overall health, and fatigue. The highest area of unmet needs were reported in the psychological and health information domains (Aranda, 2005). - Information about physical impairments related to breast cancer treatment including dysfunction of upper extremities and trunk, lymphedema, fatigue, weight gain, pain, neuropathy (Binkley, 2012). - Education, information, or support related to physical impairments or activity limitations, particularly from treating physicians and surgeons. Several studies suggest a need for education and awareness among health care professionals (Binkley, 2012). 16

17 What do patients want from their HCP s? Title Click Help to edit Master text styles Honesty Open communication Education Support Referrals 17

18 Guidelines to maximize your experience Title Click to edit Master text styles metastatic disease: - What tests will I need (lab, scans)? - Ask questions to help you better understand your - What type of breast cancer do I have (estrogen positive, HER-2 positive, triple negative)? - Where has the cancer spread (bone, other organs)? - What types of therapies should I consider (chemotherapy, radiation, surgery, hormonal, or targeted therapy)? 18

19 Guidelines to maximize your experience Title Click - Ask to for edit handouts, Master text websites styles or references that you can review at home and share with other family members. - Request communication with other providers.ask your oncologist for a treatment summary to share with all your care providers (eye doctor, dentist, primary care etc). All HCP s need to be aware of your treatment and potential side effects of therapy. 19

20 Guidelines to maximize your experience Title Click - Consider to edit Master that palliative text styles care be involved in your care from the onset of metastatic disease; this does not mean that you are giving up hope. - Why? - Symptom management during aggressive therapy - Pain management - Achieve quality of life as you define it - Emotional and spiritual support - Transition to hospice care 20

21 Title Click to edit Master text styles Questions? 21

22 References Title Click Aranda, to edit S, Schofield, Master text P, styles Weih, L, Yates, P et al. Mapping the quality of life and unmet needs of urban women with metastatic breast cancer. European Journal of Cancer Care. 14(3): , July 2005 Befort, CA, Austin, H & Klemp, JR. Weight control needs and experiences among rural breast cancer survivors. Psycho-Oncology. 20(10): , October

23 References Title Click to edit Master text styles Binkley, JM, Harris, SR, Levangie, PK, Pearl, M et al. Patient perspectives on breast cancer treatment side effects and the prospective surveillance model for physical rehabilitation for women with breast cancer. Cancer, Supplement: A Prospective Surveillance Model for Rehabilitation for Women With Breast Cancer. 118 (8): , April 2012 Goodwin, PJ, Leszca, M., Ennis, M, Koopmans, J et al. The effect of group psychosocial support on survival in metastatic breast cancer. The New England JOM. 345(24): , December

24 References Title Click National to edit Cancer Master Institute. text Stage styles IIIB, inoperable IIIC, IV, recurrent, and metastatic breast cancer. lthprofessional/page7, See more at: References.html#sthash.mlz1xlo4.dpuf Tevaarwerk AJ, Gray RJ, Schneider BP, et al. Survival in patients with metastatic recurrent breast cancer after adjuvant chemotherapy: little evidence of improvement over the past 30 years. Cancer. 119(6):1140-8,

25 References Title Click Wilson, to SE, edit Andersen, Master text MR styles & Meische, H. Meeting the needs of rural breast cancer survivors: what else needs to be done? Journal of Women's Health & Gender- Based Medicine. 9(6): , July 2000 doi: /