Cancer Survivorship Overview. Survivorship Defined. Current Focus on Survivorship 10/19/2012. US Cancer Survivor Estimates: Site

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1 US Cancer Survivor Estimates: Site Cancer Survivorship Overview Lenise Taylor, RN, MN, AOCNS SCCA/UWMC October 2012 Data source: Ries LAG, Melbert D, Krapcho M, Mariotto A, Miller BA, Feuer EJ, Clegg L, Horner MJ, Howlader N, Eisner MP, Reichman M, Edwards BK (eds). SEER Cancer Statistics Review, , National Cancer Institute. Bethesda, MD, based on November 2006 SEER data submission, posted to the SEER web site, US Cancer Survivor Estimates: Age Survivorship Defined Ideal Individuals who are 5 or more years beyond diagnosis Anyone who has been diagnosed with cancer through the balance of his or her life (NCCS) Including friends, family members and caregivers Pragmatic Period in which patients treated with curative intent have completed their initial therapy and require follow up care Period until recurrence, second cancer, or death and may include some ongoing treatment, such as hormonal therapy 12 million survivors This number will continue to increase Data source: Ries LAG, Melbert D, Krapcho M, Mariotto A, Miller BA, Feuer EJ, Clegg L, Horner MJ, Howlader N, Eisner MP, Reichman M, Edwards BK (eds). SEER Cancer Statistics Review, , National Cancer Institute. Bethesda, MD, based on November 2006 SEER data submission, posted to the SEER web site, years (35%) and > 65 years (60%) Current Focus on Survivorship Cancer and its Treatment Domains of Concern Related to Survivorship Rapidly growing population of survivors due to advances in diagnosis and treatment Greater emphasis on patient centered issues by the medical community quantity AND quantity of life Increasing expectations by patients for good quality of life Rapid increase in the number of elderly Americans Cancer as a chronic disease Economy individuals working longer Health care reform Reassessment of our care delivery models in general Focus on cost as it relates to quality Physical/medical Organ toxicity and second cancers Psychological Fear of recurrence, anxiety and depression Social Changes in relationships, economic and education issues Existential and spiritual Loss or deepened meaning in life Informational Need for ongoing, comprehensive information 1

2 The Cancer Control Continuum Institute of Medicine Report Prevention -Tobacco Control -Diet -Physical activity -Sun exposure -Virus exposure -Alcohol use -Chemoprevention Early Detection -Cancer screening -Awareness of cancer signs and symptoms Diagnosis Treatment Survivorship End-of- Life Care -Oncology consultations -Tumor staging -Patient counseling and decision making -Chemotherapy -Surgery -Radiation therapy -Adjuvant therapy -Symptom management -Psychosocial care -Long-term followup/surveillance -Late-effects management -Rehabilitation -Coping -Health promotion -Palliation -Spiritual issues -Hospice Establish survivorship as a distinct phase of care Implement survivorship care plans Build bridges between oncology and primary care Develop and test models of care Develop and evaluate clinical practice guidelines Institute quality of survivorship measures Strengthen professional education Expand use of psychosocial and community support services Invest in survivorship research Executive Summary From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, D.C.: The National Academies Press; Source: From Cancer Patient to Cancer Survivor: Lost in Transition; page 24, Box 2 2. Listening to Survivors 53% reported secondary health problems Chronic pain Sexual dysfunction Relationship difficulties Fertility issues Fear of recurrence Depression Financial & job related concerns 49% reported Non medical cancer related needs not met Wolff SN, Hichols C, Ulman D, et al. Survivorship: an unmet need of the patient with cancer implications of a Survey of the Lance Armstrong Foundation (LAF) [abstract]. Proc Am Soc Clin Oncolo 2005; 23(suppl):6032. Genetic Counseling Palliative Care Sexual Health Fertility Preservation Psychosocial Counseling Survivorship Program Smoking Cessation Physical Therapy Integrative Medicine Support Groups Nurses and Survivorship Post Treatment Care Nursing Roles Care provider Educator Counselor Advocate Survivorship Care Clinical care Education Counseling Advocacy 2

3 Post Treatment Care Surveillance for disease recurrence Monitor for late effects of treatment Teach healthful lifestyles Educate on minimizing late effects Post Treatment Care Late effects may be exacerbated by: Drugs administered Length of treatment Total amount of drug received Age Radiation Management and Follow up Coordinate follow up visits Identify problems Develop plan of care Coordinate consultation or referrals Educate patient and family Utilize resources Which statement best characterizes someone in the permanent or long term stage of survival? The survivor is cancer free The survivor is guaranteed a cure The survivor s cancer status has gradually evolved to where the probability for disease recurrence is minimal The survivor has not responded to multiple course of therapy and is preparing to die Late effects Long term effects: Occur during treatment Late effects: Occur months or years later Children s Oncology Group followed children for more than 20 years and has specific guidelines for late effects in children. Late Effects Can be subtle physically or determined by lab tests (such at thyroid studies, DEXA scan) Can be difficult to distinguish between cancer related changes, normal aging, or comorbidities Important to remember that cancer is a chronic disease Lack of evidence for adults from longitudinal studies that examine specific therapies over time 3

4 Late Effects: Surgery Neurologic structures (brain or spinal cord) Cognitive, motor, or sensory function Head and neck Communication, swallowing, breathing, disfigurement Removal of lymph nodes Lymphedema Abdominal/ostomy Obstructions, bowel/bladder changes, body image Pelvic Sexual dysfunction, incontinence Late Effects: Surgery Amputations Functional changes, psychosocial impact, pain Lung resections Fatigue, difficulty breathing Prostatectomy Incontinence, sexual dysfunction Oopherectomy Premature menopause, infertility Orchiectomy Infertility, testosterone deficiency, cardiovascular complications Late Effects: Chemotherapy/Hormonal Therapy Secondary malignancies Leukemia, lymphoma, thyroid, bladder Skeletal effects Bone destruction, osteoporosis Cardiac effects Cardiomyopathy, inflammation of heart Endocrine effects Diabetes, osteoporosis Gastrointestinal effects Motility disorders Genitourinary effects Hemmorhagic cystitis Late Effects: Chemotherapy/Hormonal Therapy Hepatic effects Abnormal liver function, cirrhosis, liver failure Neurologic effects Cognitive changes (thinking, learning), paralysis, seizures Opthalmologic effects Cataracts Pulmonary effects Lung scarring, inflammation Renal effects Impaired kidney function, renal failure Late Effects: Radiation Therapy Secondary malignancies Leukemia, lymphoma, myelodysplastic syndrome, breast, lung, sarcomas, thyroid, bone/soft tissue, gastrointestinal tract or skin Cardiac effects Scarring or inflammation of heart (left chest), coronary artery disease, scarring of pericardium (lining of heart) Endocrine effects Sterility or low levels of testosterone or female hormones Gastrointestinal effects Malabsorption, intestinal strictures Genitourinary effects Bladder scarring, small bladder capacity Late Effects: Radiation Therapy Hepatic effects Abnormal liver function, liver failure Lymphatic effects Tissue injury Neurologic effects Cognitive changes (thinking, learning, memory) Ophthalmologic effects Cataracts, dry eyes, visual impairment Pulmonary effects Lung scarring, decreased lung function Renal effects Renal hypertension, impaired kidney function 4

5 Functional and Cosmetic changes Functional Lymphedema Neuropathies Fatigue Decreased physical stamina Cosmetic Ostomies Amputations Hair loss or thinning Psychological and Spiritual Effects Psychological Fear of recurrence: Number one concern Heightened sense of vulnerability Anxiety with routine check ups and anniversaries Ambivalence about follow up care and check ups Spiritual Changes in life priorities Deepening sense of spirituality Increased self acceptance Increased passion for life Ambivalent feelings Survivor s guilt Social and Financial Issues Social Social stigma Transition from sick to previous roles Perceptions of state of health Employment, health and life insurance issues American Disabilities Act (ADA) Consolidated Omnibus Budget Reconciliation Act (COBRA) Federal Rehabilitation Act Health Insurance and Portability Act (HIPAA) Although employment dicrimination continues to haunt some survivors, there are laws that offer protection to most people with histories of cancere. When survivors qualify for new jobs, promotions or retention of existing jobs, current laws Are the same laws that protect the mentally and physically disabled Are legislated only through state government Apply to private employers only Have a statute of limitations References Ganz, P. (2009). Survivorship: Adult cancer survivors. Primary Care, 36, Hewitt, M., Greenfield, S., & Stovall, E. (Eds.). (2006). From cancer patient to cancer survivor: Lost in transition. Washington, DC: National Academies Press. Cardiac Toxicities Horner, M.J., Ries, L.A.G., Krapcho, M., Neyman, N., Aminou, R., Howlader, N., Edwards, B.K. (Eds.) (2009). SEER cancer statistics review, Bethesda, MD: National Cancer Institute. Retrieved from 5

6 The Problem The two most common diseases in the developed world are cancer and heart disease Cardiac disease may Preexist cancer therapy OR May be caused/exacerbated by therapy Number of cancer survivors is increasing due to the fact that therapy is more effective Survivors of Childhood Cancers Treatment with radiation and anthracyclines chemotherapy has a significant risk of cardiotoxicity that may manifest years following therapy. Late cardiac effects 10%+ risk of MI within 20 years 18% risk of event, include stroke HF 25% 40% risk of metabolic syndrome Example: Hodgkin Lymphoma Example: 5 and 10 year prevalence rates of heart failure between1992 and 2002 in women with breast cancer and no prior history of heart failure Disease of teens and young adults Cardiovascular disease is major non relapse cause of morbidity/mortality. Latent period of decades Risk factors Anthracycline XRT CV manifestations CAD, angina, silent MI Constrictive pericarditis Rate of heart failure (%) Anthracycline Non-anthracycline chemotherapy No chemotherapy 5 yr 10 yr Baseline Cardiovascular Risk Factors Cancer Diagnosis Modifiable Lifestyle Risk Factors (indirect effects) modified from Jones et al The Multiple Hit Hypothesis Cancer Therapy (direct effects and off target effects) Decreased Cardiovascular Reserve Higher Risk of Cardiovascular Disease and Mortality Anthracycline Cardiotoxicity One of the most widely used classification of chemotherapeutic agents Can be life threatening Combination therapies may exacerbate toxicities. Agents include doxorubicin, daunorubicin, idarubicin, and epirubicin. 6

7 Anthracycline Therapy Effects Cardiac Toxicity Radiation Therapy Acute cardiac dysfunction ~ 1% 5% Asymptomatic or clinical heart failure (HF) Weeks to months after exposure Early cardiac dysfunction LV dysfunction or clincial HF < 1 year after therapy Late cardiac dysfunction LV dysfunction or clinical HF > 1 year after therapy Major Risk Factor Interventions Assess for Risk Factors Blood Pressure Target BP < 120/80 mmhg Pharmacotherapy if BP > 140/90, or > 130/80 in diabetics or patients with renal disease Lipids Follow NCEP/ATP III guidelines Statins first line pharmacologic therapy Diabetes Target HbA1C < 7%, if this can be accomplished without significant hypoglycemia Usual Risk factors Treatment related risk factors Prior anthracycline treatment or other cardiotoxic agents Chest radiation Age at initial treatment Very young Elderly Risk Reduction/Prevention: Probable Physician Orders for Care Plan Blood pressure management Fasting lipid profile periodically EKG as baseline Glucose monitoring Echocardiogram or stress echo possibly Consider Q 2 5 year echo in very high risk patients or patients who develop symptoms Follow up long term based on risk factors, modification, and symptoms Risk Reduction/Prevention: Nursing Considerations for Care Plan Evaluate benefit from weight loss, activity, and meds Smoking cessation referral Diet counseling Activity modification/exercise 7

8 Pathophysiology/Types Pulmonary Toxicity Pneumonitis: Inflammation of the lung Pulmonary fibrosis: Destruction of the lung, causing scarring Causes Chemotherapy Direct damage Immunologic Metabolic Radiation therapy Concomitant chemotherapy and radiation therapy Signs and Symptoms Pneumonitis: Can occur up to one year after treatment Nonproductive cough Low grade fever Tachycardia Dyspnea, tachypnea Pleuritic chest pain Shortness of breath Blood tinged sputum Consolidation specifically in area treated by radiation or throughout Crackles Fatigue Restlessness Hypoxia Diagnostic Tests Radiographic Chest x ray Diffuse inflitrate CT scan Increased density of the lungs Pulmonary function testing Later finding could be decreased lung volumes. Signs and Symptoms Pulmonary fibrosis Later effect 6 12 months after treatment Symptoms Can be asymptomatic depending on extent Signs and symptoms can be the same as pneumonitis. Can lead to a chronic cor pulmonale 8

9 Management Pneumonitis Corticosteriods: Reduce inflammation, relieve symptoms, and prevent progression to fibrosis. Symptom management Bronchodilators Expectorants, humidifier, hydration, antitussives Oxygen, elevate head of bed Rest Antibiotics may be necessary. Diuretics Education for patient and family on what to expect Management Pulmonary fibrosis Employ the same symptom management as for pneumonitis. Educate patients and families that this is a chronic condition and not to expect a drastic improvement. Provide continued follow up and monitoring of pulmonary status. Cardiomyopathy, pulmonary fibrosis and sterility are examples of: Long term, late or delayed effects of cancer therapy Acute toxicity from cancer treatment Inevitable side effects from all radiation therapy Reversible effects once treatment has ended References Shelton, B.K. (2009). Side effects of cancer therapy Pulmonary toxicity. In M. Polovich, J.M. Whitford, & M. Olsen (Eds.), Chemotherapy and biotherapy guidelines and recommendations for practice (3rd ed., pp ). Pittsburgh, PA: Oncology Nursing Society. Moore Higgs, G. (2005). Site specific management Thoracic. In D.W. Bruner, M.L. Haas, & T.K. Gosselin Acomb (Eds.), Manual for radiation oncology nursing practice and education (3rd ed., pp ). Pittsburgh, PA: Oncology Nursing Society. Triest Robertson, S., Vogel, W.H., & Gobel, B.H. (2009). Genitourinary, hepatic, and pulmonary toxicities. In B.H. Gobel, S. Triest Robertson, & W.H. Vogel (Eds.), Advanced oncology nursing certification review and resource manual (pp ). Pittsburgh, PA: Oncology Nursing Society. Problem Late Effects of Cancer Treatment: Endocrine Effects Thyroid Dysfunction Adrenal Insufficiency Gonadal Toxicity Growth Hormone Deficiency Most common late effects are endocrine. Highest rates in adult survivors of pediatric cancer Up to 40% of cancer survivors Toxic treatment: Total dose received Duration of exposure Interval since the completion of therapy Stava,

10 Causes Tumor invasion to hypothalamus region Radiation therapy Chemotherapy Blood and marrow transplant Pretreatment comorbidities Hypothalamus Pituitary National Cancer Institute ( Thyroid Triidodthyronine (T3) Thyroxin (T4) Hypothyroidism Thyroid Impairment Pathophysiology Adrenal Glands Cor sol Aldosterone Adrenal Insufficiency Hypothalamus Pituitary Growth Hormone Delayed Growth and Development Testis and Ovaries Testosterone Estrogen Progesterone Ovarian Failure Early menopause Azoospermia Thyroid Dysfunction: Hypothalamus Pituitary Thyroid Axis Thyroid Dysfunction: Hypothalamus Pituitary Thyroid Axis Subclinical hypothyroidism/thyroid impairment most common thyroid s mula ng hormone (TSH) with normal T4 and T3 Overt hypothyroidism TSH with T4 and/or T3 Symptoms Apathetic/sluggish Retarded bone age/short stature Bradycardia growth rate Constipation Delayed puberty Menstrual irregularity Infertility/spontaneous abortion Screen with thyrotropin releasing hormone (TRH) stimulation test. Thyroid ultrasound Nodules/irregularity Thyroid replacement therapy: Levothyroxine Secondary Adrenal Insufficiency: Hypothalamus Pituitary Adrenal Axis Secondary Adrenal Insufficiency: Hypothalamus Pituitary Adrenal Axis Many chemotherapy and radiation regimens utilize glucocorticoids Symptoms Fatigue and weakness Anorexia and weight loss Abdominal pain Nausea and vomiting Male infertility Adrenal crisis (critical cortisol levels) Hypotension Hypoglycemia Lab testing ACTH (serum) = < 9 Cortisol (serum before 8 am); insufficiency = < 18 Cortisol stimulation test Treatment Steroid 5 mg, 10 mg, 20 mg If mineralocorticoid deficiency: Low aldosterone Also use fludrocortisone mg/day oral in am. 10

11 Gonadal Toxicity: Ovarian Failure Hypothalamus Pituitary Gonadal Axis Damage to oocytes and follicle support Signs: follicle s mula ng hormone (FSH) Hot flashes luteinizing hormone (LH) Sleep/mood disturbance estradiol Musculoskeletal pain Amenorrhea Painful intercourse Screening: FSH LH Estradiol Treatment: Precancer treatment fertility counseling Estrogen and cyclic progestin Gonadal Toxicity: Early Menopause/Infertility Hypothalamus Pituitary Gonadal Axis Risks without treatment: Early and extensive osteoporosis Cardiovascular disease Early dementia Treatment No menstruation post treatment; consider hormone replacement therapy (HRT) Pretreatment fertility counseling Gonadal Toxicity: Azoospermia/Infertility Hypothalamus Pituitary Gonadal Axis Germinal epithelium responsible for spermatogenesis Lydig cells responsible for testosterone production Screen Testosterone levels Semen analysis Treatment Offer pretreatment sperm banking if treatment intensity is thought to produce sterility. Testosterone gel or injections Growth Hormone Deficiency: Hypothalamus Pituitary Growth Hormone Axis Deregulation of growth hormone (GH) Signs Short stature Delayed tooth development Decreased growth velocity Delayed onset of puberty Increased fat around the waist Screening post treatment Growth charts Growth velocity GH levels If deficiency, follow with: Provocation tests/gh stimulation test Bone age tests. Treatment GH injections Nursing Implications Endocrine late effects from cancer treatment can resolve or be permanent. Understanding your patients history with cancer, including treatment and medical history, is key. Adherence to follow up screening and reporting of symptoms is important. Endocrine dysfunction affects patients physical, emotional, behavioral, and social functioning. References Chemaitilly, W., & Sklar, C. (2010). Endocrine complications in long term survivors of childhood cancers. Endocrine Related Cancer, 17, R141 R159. Stava, C.J., Jimenez, C., & Vassilopoulou Sellin, R. (2007). Endocrine sequelae of cancer and cancer treatments. Journal of Cancer Survivorship, 1, Tauchmanovά, L., Selleri, C., De Rosa, G., Pagano, L., Orio, F., Lombardi, G., Colao, A. (2002). High prevalence of endocrine dysfunction in long term survivors after allogeneic bone marrow transplantation for hematologic diseases. Cancer, 95,

12 Secondary Malignancies Secondary Malignancies Risk Factors Secondary malignancies occur months to years after treatment for primary cancer. Gender and age Associated agents (epipodophyllotoxins, anthracyclines, and alkylating agents) Duration of therapy Radiation Secondary Malignancies Most Common Cancers Leukemia Brain cancer Bone and Bladder Cancer Secondary Malignancies Management Life time surveillance Educate patient and family that survivors should follow cancer screening recommendations A 32 year old woman who had received mantle radiation for Hodgkin s disease at eht age of 17 asks why a baseline mammogram was ordered. Knowing the history, the nurse explains that This is a mistake, she is too young for mammogram and breasts would be too dense for a definitive procedure She would have had a baseline mammogram before treatment began The radiation would prevent any cancer from developing Follow up guidelines for young women with HL suggest a baseline mammogram 10 years after initial therapy due to increased risk of breast cancer after mantle radiation Which statement best describes the current state of long term follow up care for adult cancer survivors in the US? All long term survivors are seen in specialty follow up clinics for the rest of their lives Although pediatric survivors undergo follow up for indefinite periods of time in long term survivor specialty clinics, adult cancer survivors rarely have access to this type of follow up Adult survivors are elgible to be seen in follow up clinics after being free of disease for 5 years Primary care physicians are best prepared to identify oncology related follow up problems 12