Cancer Survivorship in Primary Care Arlene O’Rourke N.P.

67% of patients treated now will be alive in 5 years 1971-3 million 2012-13.7 million 2020-18 million Approximately 15% of the 13.7 million estimated cancer survivors were diagnosed 20 or more years ago 67% of patients treated now will be alive in 5 years 75% of childhood cancer survivors will be alive in 10 years Most common cancer sites-female breast-22%, prostate-20%, colorectal-9%, gynecologic-8%

History of the Development of Cancer Survivorship 1985 Fitzhugh Mullen first describes Cancer survivorship 1986-NCCS 1996-NCI establishes the office of Cancer Survivorship 2004-President’s Cancer Panel 2005-IOM- 2006-From Cancer patient to cancer survivor:Lost in Transition

Definitions “An individual is considered to be a cancer survivor from the time of diagnosis through the balance of his or her life. Family members, friends and caregivers are also affected by the survivorship experience and therefore are included in this definition. NCCS,IOM 2005

Definitions 5 years after diagnosis without recurrence Living with, through and beyond a diagnosis of cancer Death by other morbidity other then cancer Rejection of the term survivor

Definition IOM Recommendation Recognize cancer survivorship as a distinct phase of care Patients completing primary treatment should be provided with a comprehensive care summary and follow up plan Begins at the end of primary treatment with intention to cure and lasting until a recurrence, a secondary cancer or death. It may include ongoing treatment.

“Seasons of Survival” Acute survival Extended survival Permanent Survival

Acute Survival Time of diagnosis Diagnostics, therapeutics, Fear/anxiety Disruption of family and social roles Financial issues Fear of death

Extended Survival: Transitional Fallow up Treatment completion- uncertainty of treatment outcome Watchful waiting Periodic examinations Consolidation/intermittent therapies/hormonal therapies Fear of recurrence/death Fatigue/physical limitations/lingering side effects

Permanent Survival: Extended follow up “Cure” Late effects of treatment may impact QOL, family, workplace and financial areas Ability to return to ‘normal’ Lasting impact of cancer Development of self confidence and self trust

Goals of Survivorship care Preventing recurrence and secondary cancers Promoting appropriate disease management following diagnosis and treatment to ensure the maximum number of years of a healthy life Minimizing preventable pain, disability, and psychosocial distress Assisting cancer survivors to access family, peer, community, and other resources they need to cope with their disease.

Goals of Survivorship Care Empower survivors and families Provide enhanced and better coordination of communication around survivorship care Improve quality of life

Focus of Survivorship Care Surveillance Prevention Intervention Coordination

Surveillance Recurrent cancer and late effects Guidelines Based on type of cancer, stage at diagnosis, tumor characteristics,related risk of recurrence

Prevention New cancers Recurrent cancer Late effects Guidelines

Interventions Managing long term and late effects of treatment-organ dysfunction, mobility, fatigue, lymphedema, hormone/sexuality/fertility, secondary cancers Improve medical and psychosocial outcomes.

Coordination Improve communication between providers to promote best practice Subspecialty referrals Psychosocial referrals Resources to support patient and family

Quality of life: Physical well being Functional activities Strength/fatigue Sleep and Rest overal physical health Fertility Pain

Quality of Life: Psychosocial Control Anxiety Depression Enjoyment/Leisure Cognition/attention Distress of diagnosis Fear of recurrence Control of treatment

Quality of Life: Social well being Family distress Roles and relationships Affection/sexual function Appearance Enjoyment Isolation Finances Work

Quality of Life: Spiritual well being Meaning of illness Religiosity Transcendence Hope Uncertainty Inner strength

Treatment related Toxicities: Long term and Late effects Long term-effects that persist after completion of treatment Late-occur after treatment has completed Long and late effects can be tumor, treatment or host related.

Late effects Occur months to years following treatment Related to organ injury that occurred from treatment Failure of repair mechanisms over time and organ age More prevalent as treatments have become more complex.

Tumor Related Factors Direct tissue effects Tumor related organ dysfunction Mechanical effects

Treatment Related Factors Chemotherapy-agent, dose schedule and intensity Radiation Therapy-Total dose and fraction size, radiated field surgery-site and technique

Host Related Factors Genetic predisposition Inherent tissue sensitivities and capacity for normal tissue repair Function of organs not effected by treatment Co-morbid conditions Pre treatment psychosocial status

Surgery organ impairment Secondary side effects loss of function

Chemotherapy Effects all organs- systemic therapy Most side effects can resolve within 3-6 months of completing therapy Cardiotoxicity Neuropathy Fatigue Pain Sexual dysfunction Fertility Blood dyscrasia Pulmonary Toxicity Bone Loss Cognitive dysfunction Liver dysfunction Secondary Malignancy

Chemotherapy: Cardiac Toxicity Anthracyclines-adriamycin-diastolic dysfunction Platinums-cisplatin-artherosclerosis, endothelial damage Her-2neu agents-Trastuzumab(Herceptin)-cardiac receptors-CHF/Cardiomyopathy Antiangiogenesis agents-Bevacizumaub(Avastin)- CHF/Acute coronary Syndrome

Chemotherapy: Cardiotoxicity 1st manifests as diastolic dysfunction 5 years after treatment completion CHF/Cardiomyopathy High risk <18 >65, pre-existing cardiac disease, pregnancy, extreme sports/exercise Leads to increased morbidity and mortality

Chemotherapy: Cardiotoxicity Early intervention can improve LVEF If left untreated for more then 6 months subclinical LV dysfunction is irreversible.

Pulmonary Toxicity Chemotherapy and xRT toxicity Lung, BMT, Hodgkin’s lymphoma, testicular Bleomycin,Gemcitiabine,BCNU, Mtx, Interstitial pneumonitis,scarring, inflammation Not reversible

Neuropathy Vinca Alkaloids Taxanes-may be reversible Platinums-tinnitus/hearing loss numbness/tingling/pain Foot Drop Parasthesias Weakness Decreased reflexes

Neuropathy Baseline exam- previous or current neurological diagnosis Initiate therapy with Vitamin B therapy and Glutamine PT/OT/Acupuncture Neurontin/Cymbalta

Bone Loss Steroids, hormone therapies-aromatase inhibitors; androgen deprivation, Ovarian failure, radiation therapy Baseline bone density, vit D therapy, weight bearing exercises, biophosphatase therapy

Radiation Therapy Field/total dose Breast, Hodgkin’s, prostate, lung,colorectal, bone mets, BMT Incidence-10-30% within 5-10yrs post treatment Latent- 10-20yrs post treatment Vascular-Reynauds, artherosclerosis Skin changes Heart-valve dysfunction, myocardial/pericardial changes, electrical conduction disruption Thyroid changes Dental changes GI changes

Cancer Survivors have a 14% higher risk of secondary malignancies

Secondary Malignancies Prior therapy exposures Cancer syndromes- genetic Host environment-lifestyle choices

Psychosocial Impact: Risk factors Pre-treatment risk factors- pre-existing mental health diagnosis number of life stress events Post treatment risk factors- Decreased physical function Decreased cognitive function 40% of oncologists and 50% 0f PCP’s feel confident to manage psychosocial distress

Interventions to decrease Psychosocial distress Rehabilitation Education Therapy- group or individual Support groups Events Exercise

Demands of Cancer Survivorship Average of 3 specialists per patient Treatments may be inpatient and outpatient Time intensive and in specialized treatment facilities Cancer treatment usually occurs in isolation from primary health care - communication, multiple medical records

Oncologists Challenges 2001-2007-total patients increased by 6% Continuing patients 93% increase New patients up by 23%- breast cancer patients-continuing - 126%!! Text Text

Supply and Demand Oncologists struggle with competing needs of patients undergoing active treatment and essentially well cancer survivors. Growing shortage of PCP’s will be faced with an aging population with acute needs who will compete with essentially well appearing cancer survivors

Supply and Demand 2010-43 million supply/47 million demand Text

Challenges of the Primary Care Provider Inadequate information about the cancer and treatment Some cancers are rarely seen in the primary care setting lack of knowledge and confidence about survivorship care Patients lack of confidence in the knowledge of the primary care provider Competing demands of time

Co-morbidities/Chronic illness 60% of cancer survivors have at least 1 co-morbid condition vs 45% without cancer Worse oncologic outcomes with poorly managed co-morbidities 1PCP per 10,000 decreases mortality rate in a community by 5.3% 85% o f cancer care is provided in community settings Higher rate of screening and vaccinations in cancer survivors with PCP care More Primary Care Providers =Better cancer Survivor care

Models of Care Shared care Risk based follow up Disease specific clinics Institution based programs

Shared Care Proven to improve outcomes PCP/Oncologist share care Rule of thirds Common with other specialties in mamagement of co-morbidities

Primary Care Support Surveillance plan Risk based cancer screening Prevention Genetics Resources Coordination of care

Survivorship Care Plans Demographics Treatment Summary Follow up Care Plan

Guidelines NCCN-www.nccn.org ASCO-www.asco.org Livestrong-www.livestrongcareplan.org Journey Forward- www.journeyforward.org

Barriers to Survivorship care Finances Educated and dedicated providers Lack of acceptance and/or integration with disease based or general oncology programs Space Complexity of survivorship care Lack of clear, evidence based guidelines on proper management Limited knowledge of evolving management of co-morbidities

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