Cancer Survivorship Care
Adapted from the National Cancer Survivorship Resource Center www.cancer.org/survivorshipcenter
Development of this presentation was made possible by cooperative agreement #5U55DP003054 from the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not represent the official views of the Centers for Disease Control and Prevention. The views expressed here do not necessarily reflect the official policies of the U.S. Department of Health and Human Services; nor does mention of trade names, commercial practices, or organizations imply endorsement by the U.S. government. Overview of Survivorship
• Historically, 5 years after diagnosis • From the moment of diagnosis through the balance of life – Including family and caregivers • After active treatment
Prevention Detection Diagnosis Treatment Survivorship Focus on Survivorship Males Females 2014 2024 2014 2024
4,500 4,500 4,000 4,000 3,500 3,500 Thousands Thousands 3,000 3,000 2,500 2,500 2,000 2,000 1,500 1,500 1,000 1,000 500 500 0 0
*Non-Hodgkin American Cancer Society, 2014a Focus on Survivorship
Number of Cancer Survivors 12,000,000
10,000,000 2024 2024 2014 8,000,000 2014
6,000,000
4,000,000
2,000,000
- Males Females American Cancer Society, 2014a Focus on Survivorship – Males
2014 2024
Prostate Prostate Colorectal Colorectal Melanoma Melanoma Urinary Bladder Urinary Bladder NH* Lymphoma NH* Lymphoma Testis Kidney Kidney Testis Lung/Bronchus Oral Cavity/Pharynx Oral Cavity/Pharynx Lung/Bronchus Leukemia Leukemia
*Non-Hodgkin American Cancer Society, 2014a Focus on Survivorship – Females
2014 2024
Breast Breast Uterine Corpus Colorectal Colorectal Uterine Corpus Melanoma Melanoma Thyroid Thyroid NH* Lymphoma NH* Lymphoma Uterine Cervix Lung/Bronchus Lung/Bronchus Uterine Cervix Ovary Ovary Kidney Kidney
*Non-Hodgkin American Cancer Society, 2014a Survivorship by Time Since Diagnosis
Female
Male
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% 0 to < 5 years 5 to <10 years 10 to <15 years 15 to <20 years 20 to <25 years 25+ years American Cancer Society, 2014 Impacts of Cancer Treatment
Radiation Side Effects Hormonal Chemotherapy Therapy Side Side Effects Effects
Non-Treatment- Surgical Side Individual Specific Side Effects Effects/Risks Effects Cancer Survivor Needs
Physical Well-Being Psychological Well-Being
• Functional status • Control • Fatigue and sleep • Anxiety • Overall physical health • Depression • Fertility • Fear of recurrence • Pain Quality of Life • Cognition/attention
Social Well-Being Spiritual Well-Being
• Family distress • Meaning of illness • Roles and relationships • Religiosity • Affection/sexual function • Transcendence • Appearance • Hope • Isolation • Uncertainty • Finances/employment • Inner strength Ferrell & Hassey Dow, 1997 The Need for Survivorship Care
• Rapidly growing population of survivors • Survivors experience unmet physical, psychosocial, practical and spiritual needs • Inconsistent coordination of care and communication between primary care providers and oncologists • Significant long-term and late effects • Complexity of care, comorbid conditions American Cancer Society, 2014a Smith et al., 2008 Long-term and Late Effects
• Long-term effects are medical problems that develop during active treatment and persist after the completion of treatment • Late effects are medical problems that develop or become apparent months or years after treatment is completed Potential Physical Impacts Potential Long-Term/Late Effects by Treatment Type
Treatment Long-term side effects Late side effects
Chemotherapy Fatigue Vision/cataracts Premature menopause Infertility Sexual dysfunction Liver problems Neuropathy Lung disease “Chemo brain” Osteoporosis Kidney failure Reduced lung capacity Secondary primary cancers Radiation therapy Fatigue Cataracts Skin sensitivity Cavities and tooth decay Lymphedema Cardiovascular disease Hypothyroidism Infertility Lung disease Intestinal problems Second primary cancers Surgery Sexual dysfunction Body image disturbance Incontinence Functional disability Pain Infertility Potential Psychosocial Impacts General Psychosocial Long-Term and Late Effects • Depression, depressive symptoms • Distress • Worry, anxiety • Fear of recurrence • Pain-related concerns • End-of-life concerns: death and dying • Changes in sexual function and/or desire • Challenges with body image • Challenges with self-image • Relationship and other social role difficulties • Return to work concerns and financial challenges
Skoarus et al., 2014 Prevention and Wellness Empowering Survivors to Live Well
• Prevention – Cancer – Comorbidities • General Wellness – Diet – Exercise – Psychological well-being • Surveillance and Screening ACS Nutrition and Physical Activity Guidelines for Cancer Survivors
Achieve and maintain a healthy weight
• If overweight or obese, limit consumption of high-calorie foods and beverages and increase physical activity to promote weight loss
Engage in regular physical activity
• Avoid inactivity and return to normal daily activities as soon as possible following diagnosis • Aim for aerobic exercise at least 150 minutes per week • Include strength training exercises at least 2 days per week
Achieve a dietary pattern that is high in vegetables, fruits and whole grains
Follow the American Cancer Society Guidelines on Nutrition and Physical Activity for Cancer Prevention Spirituality Spirituality
Studies indicate that spirituality: • Helps patient with chronic illness, end-of-life and better quality of life • Increases one’s will to live • Improves coping skills, sense of coherence, meaning • Improves stress management (meditation, spiritual practices, mindfulness) • Improves pain management • Enables patient to have more realistic sources of hope (meaning in life, reconciliation, hope for finishing important goals—i.e., not cure- focused) • Increases satisfaction with care • Is a patient need
Puchalski, 2014 Formulation of a Bio-psycho-social- spiritual Assessment and Treatment Plan Recommendations: • Screen, history and assess • All health care professionals should do spiritual screening • Clinicians who refer should do spiritual histories and develop appropriate treatment plans working with Board Certified Chaplain, if possible • Identify spiritual distress (diagnostic labels and codes) • Treatment plans that include psychosocial and spiritual support • Support/encourage in expression of needs and beliefs
Puchalski, 2014 Rehabilitation Rehabilitation for Cancer Survivors
• Rehabilitation can significantly improve: – Physical outcomes – Psychological outcomes – Quality of life outcomes • Survivors have unmet needs related to rehabilitation • Rehabilitation can be incorporated across the care continuum, even at diagnosis (prehabilitation) • Patients should be referred to licensed/board certified rehabilitation health care professionals Silver et al., 2013 Silver, 2014 Care Coordination Survivorship Care Plans
• Key survivorship component • Road map for post-treatment care • Tool for care coordination and communication
Treatment Follow-up Survivorship Summary Plan Care Plan Survivorship Care Plan Templates
• American Society of Clinical Oncology www.asco.org • Journey Forward www.journeyforward.org • OncoLink Care Plan www.oncolink.org/oncolife Survivorship Guidelines Cancer Survivorship Clinical Practice Guidelines
American Cancer Society National Comprehensive American Society of Survivorship Care Cancer Network Clinical Oncology Guidelines for Primary Care Providers • By Topic: • By Topic: • By Topic: • Anxiety and depression • Neuropathy • Holistic: • Cognitive function • Fatigue • Surveillance • Exercise • Anxiety and depression • Screening • Fatigue • Fertility preservation • Long-term and late • Immunizations and • Breast cancer effects infections survivorship care • Health promotion • Pain guideline (ACS/ASCO) • Breast (ACS/ASCO), • Sexual function colorectal, head and (female/male) neck and prostate • Sleep disorders currently available American Cancer Society Cancer Survivorship Care Guidelines
Assessment and Management of Surveillance for Screening for Second Physical and Cancer Recurrence Primary Cancers Psychosocial Long- Term and Late Effects
Health Promotion Care Coordination Breast Cancer Survivorship Care Potential Surgery Effects
Long-term Effects
• Lack of skin sensitivity • Body image issues • Sexual dysfunction • Numbness • Pain • Limited range of motion • Weakness • Poor cosmetic outcome
Late Effects
• Lymphedema • Neuropathy
Runowicz et al., 2015 Potential Radiation Therapy Effects Long-term Effects
• Fatigue*† • Poor cosmetic outcome • Skin sensitivity/pain • Breast atrophy/asymmetrical breast volume • Sexual dysfunction • Lymphedema* • Pain • Numbness or weakness of upper extremity* • Pneumonitis
Late Effects
• Skin discoloration • Lymphedema • Numbness or weakness of the • Breast may remain smaller • Shortness of breath (lung upper extremity*‡ and firmer than non-irradiated pneumonitis or fibrosis) *† • Second primary cancers (e.g., breast (breast asymmetry) • Cardiovascular disease (e.g., soft-tissue sarcomas of • Skin sensitivity/pain pericardial effusion, thorax, shoulder and pelvis; • Telangiectasia pericarditis) † lung cancer) • Sexual dysfunction *Risks are increased in patients who had RT also to supraclavicular lymph nodes †Risks are increased in patients who had RT also to internal mammary lymph nodes ‡Need to be careful as these can also be signs of recurrent cancer. May need consultation with radiation oncologist. Runowicz et al., 2015 Potential Chemotherapy Effects Long-term Effects
• Cognitive impairment • Infertility • Fatigue • Weight gain • Ovarian failure with or without menopausal • Obesity symptoms • Neuropathy (especially after taxanes) • Sexual dysfunction • Oral health issues • Change in libido • Hair loss
Late Effects
• Osteoporosis/osteopenia • Increased risk of cardiovascular disease (cardiomyopathy, congestive heart failure) with anthracycline-based chemotherapy • Increased risk of leukemia after anthracycline-based chemotherapy
Runowicz et al., 2015 Potential Hormonal Therapy Effects Long-term Effects
Tamoxifen Aromatase Inhibitors • Hot flashes • Vaginal dryness • Changes in menstruation • Decreased libido • Weight gain • Musculoskeletal symptoms/pain • Mood changes • Cholesterol elevation • Increased triglycerides
Late Effects
Tamoxifen Aromatase Inhibitors • Increased risk of stroke • Increased risk of osteoporosis • Increased risk of endometrial cancer • Increased risk of fractures • Increased risk of blood clots • Osteopenia in premenopausal women
Runowicz et al., 2015 Potential Targeted Therapy Effects
Long-term Effects
Trastuzumab • Increased risk of cardiac dysfunction
Runowicz et al., 2015 Colorectal Cancer Survivorship Care Potential Surgery Effects
Long-term Effects
• Ostomy care and complications • Urogenital/sexual dysfunction • Frequent and/or urgent bowel movements or loose bowels • Gas and/or bloating • Incisional hernia
Late Effects
• Bowel obstruction
El-Shami et al., 2015 Potential Pelvic Radiation Effects
Long-term Effects
• Chronic diarrhea • Localized skin changes • Rectal ulceration/bleeding • Urogenital/sexual dysfunction • Emptying problems/incontinence • Gas • Frequent bowel movements • Abdominal pain
Late Effects
• Infertility • Bone fracture in sacral region • Second primary cancers in radiation field • Bowel obstruction
El-Shami et al., 2015 Potential Chemotherapy Effects
Long-term Effects
• Peripheral chronic neuropathy • Cognitive function deficits • Chronic fatigue
Late Effects
• Dental/oral complications
El-Shami et al., 2015 Head and Neck Cancer Survivorship Care Potential Surgery Effects
Long-term Effects
• Shoulder function • Musculoskeletal effects • Shoulder mobility, pain • Trismus • Oral health complications • Impaired neck motion, pain • Xerostomia • Stricture • Dysphagia • Oral infections
Late Effects
• Spinal nerve abnormalities • Lymphedema • Neuropathy • Cervical radiculopathy
Cohen et al., 2016 Potential Radiation Therapy Effects Long-term Effects
• Oropharyngeal • Trismus • Lymphovascular • Xerostomia • Musculoskeletal • Lymphedema • Dysphagia • Shoulder dysfunction • Oral health complications • Neuromuscular • Integumentary • Xerostomia • Cervical dystonia • Radiation dermatitis • Oral infections
Late Effects
• Vision • Pulmonary • Lymphovascular • Premature cataracts • Pulmonary fibrosis • Lymphedema • Cardiovascular • Neuromuscular • Carotid stenosis • Carotid obstruction • Cervical dystonia • Sensory complications • Baroreceptor failure • Trismus • Hearing loss • Oropharyngeal • Brachial plexopathy • Ocular issues • Xerostomia • Cervical radiculopathy • Altered or loss of taste • Dysphagia • Musculoskeletal • Dysarthria • Osteonecrosis Cohen et al., 2016 Potential Chemotherapy Effects Long-term Effects
• Neuromuscular • Other effects • Anemia • Sensor/motor • Hot flashes/sweats • Body hair loss neuropathy • Weight gain, abdominal • Dry eyes • Sensory ataxia obesity • Gait dysfunction • Fatigue/decreased • Vertigo activity
Late Effects
• Neuromuscular • Diabetes; decreased sensitivity to insulin • Cardiac abnormality, cardiomyopathy and oral glycemic agents • Other effects • Increased cholesterol • Osteoporosis, fractures • Increased fat mass and decreased lean • Metabolic syndrome muscle mass/muscle wasting • Cardiovascular disease—possible • Venous thromboembolism increased risk of myocardial infarction • Vertigo • Cognitive dysfunction Cohen et al., 2016 Prostate Cancer Survivorship Care Potential Surgery Effects
Long-term Effects
• Urinary dysfunction • Urinary incontinence (stress) • Urinary symptoms (urgency, frequency, nocturia, dribbling) • Urethral stricture formation (scarring at the urethra) • Sexual dysfunction • Erectile dysfunction (ED) • Lack of ejaculation • Orgasm changes (without erection, associated with incontinence) • Penile shortening
Late Effects
• Disease progression
Skolarus et al., 2014 Potential Radiation Effects Long-term Effects
• Urinary dysfunction • Sexual dysfunction • Urinary incontinence • Progressive erectile dysfunction (ED) • Urinary symptoms (dysuria, urgency, • Decreased semen volume frequency, nocturia, dribbling) • Bowel dysfunction • Hematuria • Fecal urgency, frequency, incontinence • Urethral stricture • Blood in stool • Rectal inflammation, pain
Late Effects
• Urinary dysfunction • Bowel dysfunction • Urethral stricture • Rectal bleeding secondary to • Hematuria due to small blood vessel thinning/small blood vessel changes of changes anterior rectal wall mucosa • Sexual dysfunction • Disease progression • ED can be delayed in onset 6-36 months after therapy Skolarus et al., 2014 Potential Hormonal Therapy Effects
Long-term Effects
• Sexual dysfunction • Weight gain, abdominal • Depression • Loss of libido obesity • Fatigue/decreased • Erectile dysfunction • Change in body image activity (ED) • Excessive emotional • Gynecomastia • Other effects reactions and frequent • Anemia • Hot flushes/sweats mood changes • Body hair loss • Dry eyes
Late Effects
• Osteoporisis, fractures • Increased fat mass and decreased lean muscle • Metabolic syndrome mass/muscle wasting • Cardiovascular disease (possible increased • Venous thromboembolism risk of myocardial infarction) • Vertigo • Diabetes; decreased sensitivity to insulin and • Cognitive dysfunction oral glycemic agents • Disease progression • Increased cholesterol Skolarus et al., 2014 Potential Expectant Management Effects
Long-term Effects
• Stress, anxiety, worry • Risks associated with repeat biopsy (active surveillance), PSAs and DREs • Symptoms associated with disease progression
Late Effects
• Disease progression
Skolarus et al., 2014 Primary Care Providers’ Role in Cancer Survivorship Care • PCPs should play an active role in the care coordination of cancer survivors by: – Promoting healthy behaviors – Assisting in the surveillance for cancer recurrence and second primary cancers – Assessing and managing physical and psychosocial long-term and late effects – Clarifying care roles when needed with other members of the cancer treatment team View the Guidelines
• Breast at bit.ly/BrCaCare • Colorectal at bit.ly/acscolorc • Head and Neck at bit.ly/acsheadneck • Prostate at bit.ly/ACSPrCa
Survivorship Continuing Education Cancer Survivorship E-Learning Series bit.ly/PCPE-Learning E-Learning Series: Module Topics
Module 1
• The Current State of Survivorship Care and the Role of Primary Care Providers
Module 2
• Late Effects of Cancer and its Treatments: Managing Comorbidities and Coordinating with Specialty Providers
Module 3
• Late Effects of Cancer and its Treatment: Meeting the Psychosocial Health Care Needs of Survivors E-Learning Series: Module Topics
Module 4
• The Importance of Prevention in Cancer Survivorship: Empowering Survivors to Live Well
Module 5
• A Team Approach: Survivorship Care Coordination
Module 6
• Cancer Recovery and Rehabilitation E-Learning Series: Module Topics
Module 7
• Spotlight on Prostate Cancer Survivorship
Module 8
• Spotlight on Colorectal Cancer Survivorship
Module 9
• Spotlight on Breast Cancer Survivorship
Module 10
• Spotlight on Head and Neck Cancer Survivorship E-Learning Series: Module Topics
• Each module includes: – Survivor interview – Narrated presentations – Pre/post assessments – List of resources – One hour CME/CNE per module Survivorship Resources
• National Cancer Survivorship Resource Center www.cancer.org/survivorshipcenter • Cancer Survivorship E-Learning Series for Primary Care Providers bit.ly/PCPE-Learning • ACS Prevention, Early Detection and Survivorship Guidelines www.cancer.org/professionals
Questions?
If you have questions about the National Cancer Survivorship Resource Center, contact [email protected].
For questions about this presentation or the National Cancer Survivorship Resource Center Toolkit, contact [email protected].
www.gwcancerinstitute.org www.cancer.org/survivorshipcenter References American Cancer Society. (2014). Cancer treatment and survivorship facts and figures 2014-2015. Retrieved from: http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-042801.pdf
American Cancer Society. (2014a). Cancer treatment and survivorship facts & figures 2014-2015. Retrieved from: http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-042801.pdf
Brennan, M.E., Gormally J.F., Butow P., Boyle F.M., & Spillane A.J. (2014). Survivorship care plans in cancer: A systematic review of care plan outcomes. British Journal of Cancer, 111, 1899-1908.
Cohen, E.W., LaMonte, S.J., Erb, N.L., Beckman, K.L., Sadeghi, N., Hutcheson, K.A.,…Pratt-Chapman, M.L. (2016). American Cancer Society head and neck survivorship care guideline. CA: A Cancer Journal for Clinicians. Published online first. http://dx.doi.org/10.3322/caac.21343
El-Shami K., Oeffinger K.C., Erb N.L., Willis, A., Bretsch, J.K., Pratt-Chapman, M.L.,…Cowens-Alvarado, R.L. (2015). American Cancer Society colorectal cancer survivorship care guidelines. CA: A Cancer Journal for Clinicians, 65(6), 427-455. http://dx.doi.org/10.3322/caac.21286.
Fann, J.R., Thomas-Rich, A.M., Katon, W.J., Cowley, D., Pepping, M., McGregor, B.A., & Gralow, J. (2008). Major depression after breast cancer: A review of epidemiology and treatment. General Hospital Psychiatry, 30(2), 112-126. http://dx.doi.org/10.1016/j.genhosppsych.2007.10.008
Ferrell, B.R., & Hassey Dow, K. (1997). Quality of life among long-term cancer survivors. Oncology, 11(4), 565-571.
Jones, C., Roderick, P., Harris, S., & Rogerson, M. (2006). An evaluation of a shared primary and secondary care nephrology service for managing patients with moderate to advanced CKD. American Journal of Kidney Diseases, 47(1), 103–114. http://dx.doi.org/10.1053/j.ajkd.2005.09.020
Maunsell, E., Pogany, L., Barrera, M., Shaw, A.K., & Speechley, K.N. (2006). Quality of life among long-term adolescent and adult survivors of childhood cancer. Journal of Clinical Oncology, 24(16), 2527-2535.
References Mayer, D.K., Birken, S.A., Check, D.K., & Chen, R.C. (2015). Summing it up: an integrative review of studies of cancer survivorship care plans (2006–2013). Cancer, 121(7), 978-996. http://dx.doi.org/10.1002/cncr.28884
Mayo Clinic. (2014). Cancer survivors: Late effects of cancer treatment. Retrieved from http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer- survivor/art-20045524
National Comprehensive Cancer Network. (1999). NCCN practice guidelines for the management of psychosocial distress. Oncology (Williston Park), 13(5A), 113–147.
Nielsen, J.D., Palshof, T., Mainz, J., Jensen, A.B., & Olesen, F. (2003). Randomised controlled trial of a shared care programme for newly referred cancer patients: bridging the gap between general practice and hospital. Quality and Safety in Health Care, 12(4), 263-272.
Puchalski, C. (2014). The role of spirituality in cancer care. Cancer Survivorship E-Learning Series for Primary Care Providers. Retrieved from: www.cancersurvivorshipcentereducation.org.
Puchalski, C., Ferrell, B., Virani, R., Otis-Green, S., Baird, P., Bull, J., … Sulmasy, D. (2009). Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference. Journal of Palliative Medicine, 12(10), 885-904. http://dx.doi.org/10.1089/jpm.2009.0142
Renders, C.M., Valk, G.D., de Sonnaville, J.J., Twisk, J., Kriegsman, D.M., Heine, R.J., … van der Wal, G. (2003). Quality of care for patients with Type 2 diabetes mellitus—a long-term comparison of two quality improvement programmes in the Netherlands. Diabetic Medicine, 20(10), 846-852.
Rock, C.L., Doyle, C., Demark-Wahnefried, W., Meyerhardt, J., Courneya, K.S., Schwartz, A.L., … Gansler, T. (2012). Nutrition and physical activity guidelines for cancer survivors. CA: A Cancer Journal for Clinicians,62(4), 243-274. http://dx.doi.org/10.3322/caac.21142
References Runowicz C.D., Leach C.R., Henry N.L., Henry, K.S., Mackey, H.T., Cowens-Alvarado, R.L.,…Ganz, P.A.(2016), American Cancer Society/American Society of Clinical Oncology breast cancer survivorship care guideline. CA: A Cancer Journal for Clinicians, 66(1), 43-73. http://dx.doi.org/10.3322/caac.21319
Skolarus T.A., Wolf A., Erb, N.L., Brooks, D.D., Rivers, B.M., Underwood, W.,…Cowens-Alvarado, R.L. (2014). American Cancer Society prostate cancer survivorship guidelines. CA: A Cancer Journal for Clinicians, 64(4), 225-249. http://dx.doi.org/10.3322/caac.21234
Silver, J.K.. (2104). Cancer rehabilitation: A critical component of survivorship care. Cancer Survivorship E-Learning Series for Primary Care Providers. Retrieved from: www.cancersurvivorshipcentereducation.org.
Silver, J.K., Baima, J., & Mayer, R.S. (2013). Impairment-driven cancer rehabilitation: an essential component of quality care and survivorship. CA: A Cancer Journal for Clinicians, 63(5), 295-317. http://dx.doi.org/10.3322/caac.21186
Smith, A.W., Reeve, B.B., Bellizzi, K.M., Harlan, L.C., Klabunde, C.N., Amsellem, M., … Hays, R.D. (2008). Cancer, comorbidities, and health-related quality of life of older adults. Health Care Financing Review, 24(4), 41-56.
Wolin, K.Y., Dart, H., & Colditz, G.A. (2013). Eight ways to stay healthy after cancer: An evidence-based message. Cancer Causes Control, 24(5), 827-837. http://dx.doi.org/10.1007/s10552-013-0179-z