The Journey of Patients Treated for Cure of Cancer: Follow-up

1. The Journey of Patients Treated for Cure of Cancer: Follow-up Speaker:Breast - Dr. Cicely Bryce BCCA Annual Cancer Conference Nov. 2003

2. Problems with the system of care • Study looking at what is lacking • communication • Co-ordination • continuity • Solutions navigation models • people (a new professional) • clarification of patient needs

3. Improving breast cancer care • Navigation • includes an advocacy role, education, • co-ordinates care • psychosocial supports through the illness experience • preparatoin for procedures • links with professionals and volunteers

4. Navigator role • Empowerment • flexible approach • patients vary in the degree of control they want over decisions • enhance individual sense of control and preparedness to respond to stressful situations • relates to health and well-being • cost effective

5. Mapping the patient needs • Agreement between professionals and patient advocacy groups • Patient needs change in different phases of the journey of cancer • Breast cancer has a broad patient support network and effective tumour group, public interest to partner with and work together • aligning patient needs with professional work would be efficient

6. Mapping the patient needs • Efficient, work that is focused on a population based platform of pre-determined patient-centered needs required for establishment of Chronic disease management strategies • Chronic Disease management strategies are a recognized way for effecting new re-imbursement methods. • Reimbursement for accountable work equals better care and happier professionals

7. Mapping the patient needs • Goals • Determine changing needs for patients between from diagnosis to death from cancer • Establish phases or cycles of the journey of cancer from diagnosis to death • Identify critical events from the patients perspective

8. Mapping the patient needs • Identify the detailed patient needs under topics • physical/medical • psychosocial • educational • practical

9. Mapping the patient needs • Align the responsibilities of health care professionals to needs • detail roles for health care individuals (eg doctor, nurse or doctor, nurse, pharmacist etc.) • ALL PROFESSIONALS KNOW THE NEEDS ---Divide up the work among those able and available.

10. Mapping the patient needs • INCOMPLETE • ITERATIVE PROCESS • WE ARE LOOKING FOR YOUR INPUT ON PRINCIPLES • DISCUSSION TODAY

11. Discover a worrisome change Living life Leave for treatment cycle - curative &/or - palliative Seek information & support Make a Plan - learn about your cancer & specific treatment options Primary Diagnosis Link with primary care provider Hear the cancer diagnosis Undergo diagnostic tests or procedures

12. Enter from the diagnostic cycle Decide what treatments to take Living life after curative tx Curative Treatment Cycle Receive treatment(s) End treatment(s) Learn to manage effects of treatment

13. Grieve losses & adapt to changes Enter from curative treatment cycle Getting on with life Living life after curative treatment Learn about your follow-up plan Learn about and engage in use of psychosocial resources Learn about and engage in rehabilitation

14. Discover a worrisome change Living life Leave for treatment cycle - curative &/or - palliative Hear the recurrence diagnosis and make a plan Seek information & support Secondary diagnoses Link with primary care provider Undergo diagnostic tests or procedures

15. Enter from a diagnosis cycle Decide what treatments to take Living with breast cancer End treatment(s) Non-cureative Treatment Cycle Take the treatment(s) Manage the effects of treatment

16. Enter from ending treatment cycle Cope with functional losses Dying from breast cancer Come to terms with a peaceful co-existence with your cancer Help family find new sense of hope for their future Living with breast cancer Self Manage symptoms Find a new sense of hope for yourself

17. Learn about treatment options Enter from living after treatments Decide what treatments to take Supportive Care Cycle End of life care Cope with progressive losses Take leave

18. Survivourship • Grieving and adapting to changes • physical • pyschosocial • Learn about the follow-up plan • Physical/Medical • asymptomatic management • preventing new primaries • screening for new primaries • symptomatic evaluation

19. Survivourship • long term side effect management • sleep, menopause symptoms, tamoxifen • Learn about and engage in rehabilitation • Learn about psychosocial resources

20. Follow-up guidelines

21. Follow-up guidelines a. Breast self-examination should be instructed to all women. The postmastectomy chest wall should be examined in a similar manner. b. If the patient has had breast conservation treatment, careful follow up of the treated breast is required as follows: • five to six weeks after radiation is completed, the patients should be seen at an Agency or a consultative clinic to assess acute reactions. • for five years the patient should be seen every six months by a physician. Baseline, post-treatment bilateral mammograms should be performed approximately six months after all treatment has been completed and repeated annually thereafter. • after five years the patient should be seen every year by their family doctor for physical examination and bilateral mammogram.

22. Follow-up Guidelines

23. Chronic Disease Management • BREAST CANCER POST TREATMENT MANAGEMENT DOCUMENTATION (If asymptomatic see every 6 months and then yearly) • Name________________________________________ BD___________Diagnosis date_____________ • Co-morbid conditions___________________________ Age at DX_______  premenopausal at dx • ___________________________________ •  Osteoporosis  Hereditary cancer Treatment Partial mast  Mast • Prognositc Factors Path Stage T ____ N______ • ER  positive  negative • Her-2  positive  negative • Patient’s Work : Vocation___________________________________ • Household________________________________ •  Ax dissect Radiation  Tam  AI___________ • Chemo therapy Adriamycin/epirubicin

24. Date Baseline Symptoms Anger, guilt, depression, anxiety Fatigue/sleep Resp Bone appetite menopause flushes/vag dry Sexuality/Fertility Employment issues Meds compliance Signs Baseline Weight Supraclav fossa Axilla Chest wall Breast (s) Chest liver

25. Lab Mammogram (s) yearly  _________ ____________ Bone density every 2 years dates _____________ ______________ Education issues monthly breast self exam with instruction if needed  smoking  maintain ideal body weight  exercise  Support groups Educational resources  Life after Cancer  bccancer.bc.ca patient resources

26. Summary • The breast cancer journey can be divided into a series of phases with different patient needs according to critical incidents. • Chronic Disease management model of care can apply to a curative disease • e.g. Diagnostic, Treatment, Survivourship phases, and living with recurrent disease • Tools can and should be developed to support CDM model in oncology