Cancer Survivorship Care

Adapted from the National Cancer Survivorship Resource Center www.cancer.org/survivorshipcenter

Cancer Survivorship Care

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.

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You may use any or all of this presentation as long as the National Cancer Survivorship Resource Center is acknowledged.

http://bit.ly/1o8AmJl

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

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Historically, a person entered the survivorship phase of the cancer continuum once they were 5 years post-diagnosis. Based on efforts of organizations like the National Coalition for Cancer Survivorship and the LIVESTRONG Foundation, the definition has evolved to define survivorship as starting from the moment of diagnosis. This definition acknowledges that cancer patients begin surviving from the time they are diagnosed. That definition has since been expanded to include family and caregivers. In practice, the term survivorship often means the time after active treatment. The National Cancer Institute defines survivorship as: “the health and life of a person with cancer post treatment until the end of life. It covers the physical, psychosocial, and economic issues of cancer, beyond the diagnosis and treatment phases. Survivorship includes issues related to the ability to get health care and follow-up treatment, late effects of treatment, second cancers, and quality of life. Family members, friends, and caregivers are also considered part of the survivorship experience.” It is important to recognize that not all cancer survivors like the term survivor. For some, cancer is not a defining part of their lives. For others, they do not think the term captures their experience. Some terms people may use are thriver, fighter or even diva. Each person’s survivorship experience is different.

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Females 2014 2024

Focus on Survivorship

American Cancer Society, 2014a

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1,0001,5002,0002,5003,0003,5004,0004,500

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Males 2014 2024

*Non-Hodgkin

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The American Cancer Society estimates that as of January 2014, 14.5 million cancer people with a history of cancer diagnosis were alive in the United States.

Focus on Survivorship


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2,000,000

4,000,000

6,000,000

8,000,000

10,000,000

12,000,000

Males Females

Number of Cancer Survivors

2014 2014

2024 2024

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Based on the growing baby boomer population, this number is expected to be nearly 19 million by 2024.

Focus on Survivorship – Males


2014

ProstateColorectalMelanomaUrinary BladderNH* LymphomaTestisKidneyLung/BronchusOral Cavity/PharynxLeukemia

2024

ProstateColorectalMelanomaUrinary BladderNH* LymphomaKidneyTestisOral Cavity/PharynxLung/BronchusLeukemia

*Non-Hodgkin

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Over 40% of male survivors were diagnosed with prostate cancer.

2014

BreastUterine CorpusColorectalMelanomaThyroidNH* LymphomaUterine CervixLung/BronchusOvaryKidney

2024

BreastColorectalUterine CorpusMelanomaThyroidNH* LymphomaLung/BronchusUterine CervixOvaryKidney

Focus on Survivorship – Females

*Non-Hodgkin American Cancer Society, 2014a

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Similarly, over 40% of female cancer survivors were diagnosed with breast cancer.

Survivorship by Time Since Diagnosis

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Male

Female

0 to < 5 years 5 to <10 years 10 to <15 years15 to <20 years 20 to <25 years 25+ years

American Cancer Society, 2014

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In addition to the types of survivors by gender and site, it’s important to understand survivorship by time since diagnosis. About 2/3 of all cancer survivors were diagnosed 5 or more years ago. 15% were diagnosed 20 or more years ago. Almost half of all survivors are 70 years of age or older, while only 5% are younger than 40 years. This means that we are looking at an older population that is at risk for multiple cancer- and non-cancer-related comorbidities.

Impacts of Cancer Treatment

Individual Effects/Risks

Surgical Side Effects

Chemotherapy Side Effects

Radiation Side Effects

Hormonal Therapy Side

Effects

Non-Treatment-Specific Side

Effects

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There are many impacts of cancer, which can be the result of surgery, chemotherapy, radiation and hormonal treatment. They may also be non-treatment-specific.

Quality of Life

Cancer Survivor Needs Psychological Well-Being Physical Well-Being

Social Well-Being Spiritual Well-Being

• Functional status • Fatigue and sleep • Overall physical health • Fertility • Pain

• Control • Anxiety • Depression • Fear of recurrence • Cognition/attention

• Family distress • Roles and relationships • Affection/sexual function • Appearance • Isolation • Finances/employment

• Meaning of illness • Religiosity • Transcendence • Hope • Uncertainty • Inner strength

Ferrell & Hassey Dow, 1997

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These impacts affect quality of life across these 4 major domains: physical well-being, psychological well-being, social well-being and spiritual well-being. These domains are all interrelated. For example, a survivor who fears recurrence may be less likely to seek treatment for physical issues, which may impact their social and spiritual well-being.

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

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According to the American Cancer Society’s Cancer Treatment & Survivorship Facts and Figures, there are approximately 14.5 million cancer survivors in the U.S. Survivors can experience a wide array of physical, psychological, social, practical and spiritual concerns that linger or show up long after treatment. There is high variability in the way health care services are delivered after cancer treatment and limited, inconsistent care coordination between primary care providers and oncologists. Often there is confusion about what each health care provider is responsible for in terms of health care for the cancer survivor. Additionally, cancer survivors are at risk for significant long-term and late effects, which can be compounded by the complexity of care and the need to deal with multiple comorbid conditions.

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

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Two terms are often used to describe effects of cancer and its treatment. Long-term effects are medical problems that develop during active treatment and persist after the completion of treatment, whereas late effects are medical problems that develop or become apparent months or years after treatment is completed.

Potential Physical Impacts

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Let’s start by discussing some potential physical impacts from treatment.

Potential Long-Term/Late Effects by Treatment Type Treatment Long-term side effects Late side effects

Chemotherapy Fatigue Premature menopause Sexual dysfunction Neuropathy “Chemo brain” Kidney failure

Vision/cataracts Infertility Liver problems Lung disease Osteoporosis Reduced lung capacity Secondary primary cancers

Radiation therapy Fatigue Skin sensitivity Lymphedema

Cataracts Cavities and tooth decay Cardiovascular disease Hypothyroidism Infertility Lung disease Intestinal problems Second primary cancers

Surgery Sexual dysfunction Incontinence Pain

Body image disturbance Functional disability Infertility

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Impacts depend on many factors, including diagnosis, treatment and age. This list is not exhaustive. Some survivors may experience few of these, and some survivors may experience many of these. Data currently is not available to predict who will experience which effects and when. Nonetheless, these effects need to be managed when they do occur.

Potential Psychosocial Impacts

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Now let’s look at some potential psychosocial impacts of cancer and its treatment.

General Psychosocial Long-Term and Late Effects

Skoarus et al., 2014

• 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

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This list demonstrates some general psychosocial long-term and late effects, including: Depression or depressive symptoms, Psychosocial distress, which is something cancer survivors need to be screened for. Distress is a multi-factorial, unpleasant emotional experience that may be psychological, social or spiritual. It interferes with the ability to cope effectively with cancer and survivorship. Distress extends along a continuum from normal to disabling problems, such as depression or anxiety. Other effects include: Worry or anxiety, which can occur with follow-up tests Fear of recurrence Pain-related concerns End of life concerns related to death and dying Changes in sexual function and/or desire Challenges with body image Challenges with self-image Relationship and other social role difficulties and Return to work concerns and financial challenges

Prevention and Wellness

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As in the general population, prevention and wellness are important for cancer survivors. However, they may not be having prevention and wellness discussions with their healthcare team.

Empowering Survivors to Live Well

• Prevention – Cancer – Comorbidities

• General Wellness – Diet – Exercise – Psychological well-being

• Surveillance and Screening

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Cancer survivors are at risk for recurrence and for developing secondary cancers, so lifestyle recommendations for chronic disease prevention are critically important. They may also be at increased risk for other chronic diseases. Strategies for empowering survivors to live well include prevention of cancer and co-morbidities, general wellness recommendations related to diet, exercise and psychological well-being and conducting surveillance and screening for recurrence and new primary cancers.

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

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The American Cancer Society has released nutrition and physical activity guidelines specifically for cancer survivors. Survivors should: 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 to 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

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Spirituality is something to consider in relation to cancer survivorship as well.

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

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Spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred. Studies have shown 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

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

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Screen and assess every patient’s spiritual symptoms, values, and beliefs and integrate them into the plan of care. All trained healthcare professionals should do spiritual screening and history-taking. These caregivers should also identify any spiritual diagnoses and develop a plan of care. Detailed assessment and complex diagnosis and treatment are the purview of the board-certified chaplains working with the interprofessional team as the spiritual care experts. 3.Currently available diagnostic labels (e.g., National Comprehensive Cancer Network [NCCN] Distress Management/Pastoral Services guidelines, Diagnostic and Statistical Manual [DSM] code V62.89, and NANDA nursing diagnoses) can be used, but further work is needed to develop more comprehensive diagnostic codes for spiritual problems. 4. Treatment plans should include but not be limited to a.Referral to chaplains, spiritual directors, pastoral counselors, and other spiritual care providers including clergy or faith- community healers for spiritual counseling b.Development of spiritual goals c.Meaning-oriented therapy d.Mind-body interventions e.Rituals, spiritual practices f.Contemplative interventions Patients should be encouraged and supported in the expression of their spiritual needs and beliefs as they desire and this should be integrated into the treatment or care plan and reassessed periodically. Written material regarding spiritual care, including a description of the role of chaplains should be made available to patients and families. Family and patient requests specifically related to desired rituals at any point in their care and particularly at the time of death should be honored. Board-certified chaplains should function as spiritual care coordinators and help facilitate appropriate referrals to other spiritual care providers or spiritual therapies (e.g., meditation training) as needed. Spiritual support resources from the patient’s own spiritual/religious community should be noted in the chart. Follow-up evaluations should be done regularly, especially when there is a change in status or level of care, or when a new diagnosis or prognosis is determined. Treatment algorithms can be useful adjuncts to determine appropriate interventions. 10. The discharge plan of care should include all dimensions of care, including spiritual needs.

Rehabilitation

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Rehabilitation is recognized in other areas of medicine as being a critical component of care. It can be helpful in cancer survivorship as well.

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

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Rehabilitation can significantly improve physical, psychological and quality of life outcomes in oncology patients; yet, cancer survivors have unmet needs related to rehabilitation.

Care Coordination

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Care coordination is critical for cancer survivors.

Survivorship Care Plans

• Key survivorship component • Road map for post-treatment care • Tool for care coordination and

communication

Treatment Summary

Follow-up Plan

Survivorship Care Plan

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Survivorship care plans are considered a key survivorship care component. They serve as a roadmap for post-treatment care and can be used as a tool for care coordination and communication. A survivorship care plan has two parts: the treatment summary and the follow-up plan for care. The treatment summary includes relevant information about the patient’s treatment history, including drugs and doses and side effects. The follow-up plan lays out a schedule of what tests or monitoring is needed, when and who is responsible for those activities. It should also include health behavior recommendations. The survivorship care plan should be created by the patient’s treating team and shared with other specialists, primary care providers and the patient.

Survivorship Care Plan Templates

• American Society of Clinical Oncology www.asco.org

• Journey Forward www.journeyforward.org

• OncoLink Care Plan www.oncolink.org/oncolife

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There are several free care plan templates that can be used. The American Society of Clinical Oncology has free Microsoft Word-based templates for cancers in general as well as breast, colorectal, small cell and non-small cell lung and prostate cancers as well as diffuse large B-cell lymphoma. Journey Forward is free software that clinicians can use to create survivorship care plans. It includes a library of regimens and some auto-populating fields to save time. The OncoLink care plan, formerly the LIVESTRONG care plan, can be used by survivors or clinicians. Information about treatment type and drugs is used to create a survivorship care plan that includes possible long-term and late effects. There are some software companies that sell care planning tools, many of which integrate with electronic medical records to pull structured data to auto-populate certain elements of the treatment summary.

http://www.asco.org/

http://bit.ly/1XNBCO6

http://bit.ly/1q2BsaU

Survivorship Guidelines

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There are several survivorship guidelines available that have different areas of focus.

Cancer Survivorship Clinical Practice Guidelines

National Comprehensive Cancer Network

• By Topic: • Anxiety and depression • Cognitive function • Exercise • Fatigue • Immunizations and

infections • Pain • Sexual function

(female/male) • Sleep disorders

American Society of Clinical Oncology

• By Topic: • Neuropathy • Fatigue • Anxiety and depression • Fertility preservation

• Breast cancer survivorship care guideline (ACS/ASCO)

American Cancer Society Survivorship Care

Guidelines for Primary Care Providers

• By Topic: • Holistic:

• Surveillance • Screening • Long-term and late

effects • Health promotion

• Breast (ACS/ASCO), colorectal, head and neck and prostate currently available

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In addition to some survivorship information in its disease-specific guidelines, the National Comprehensive Cancer Network has topic-based guidelines for survivors that cover anxiety and depression, cognitive function, exercise, fatigue, immunizations and infections, pain, sexual function (female/male) and sleep disorders. Similarly, ASCO has limited disease-specific guidelines as well as topic-based guidelines covering neuropathy, fatigue, anxiety and depression and fertility preservation. The American Cancer Society released disease-specific guidelines including colorectal, head and neck and prostate, and breast cancer guidelines in partnership with ASCO. These guidelines are holistic and cover multiple domains, including surveillance and screening, health promotion and care coordination.

American Cancer Society Cancer Survivorship Care Guidelines

Surveillance for Cancer Recurrence

Screening for Second Primary Cancers

Assessment and Management of

Physical and Psychosocial Long-

Term and Late Effects

Health Promotion Care Coordination

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The American Cancer Society and American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline provides recommendations to primary care clinicians for the care of breast cancer survivors in the following areas: Surveillance for Cancer Recurrence Early Detection in Average Risk, Asymptomatic Individuals Assessment & Management of Physical & Psychosocial Long-Term & Late Effects Health Promotion and 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

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Surgery for breast cancer can lead to long-term and late effects.

Potential Radiation Therapy Effects Long-term Effects

• Fatigue*† • Skin sensitivity/pain • Sexual dysfunction • Pain • Pneumonitis

• Poor cosmetic outcome • Breast atrophy/asymmetrical breast volume • Lymphedema* • Numbness or weakness of upper extremity*

Late Effects

• Skin discoloration • Breast may remain smaller

and firmer than non-irradiated breast (breast asymmetry)

• Skin sensitivity/pain • Telangiectasia • Sexual dysfunction

• Lymphedema • Shortness of breath (lung

pneumonitis or fibrosis) *† • Cardiovascular disease (e.g.,

pericardial effusion, pericarditis) †

• Numbness or weakness of the upper extremity*‡

• Second primary cancers (e.g., soft-tissue sarcomas of thorax, shoulder and pelvis; lung cancer)


*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.

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These are potential effects of radiation therapy to the breast/chest-wall/regional lymph nodes. It is important to note that some of these may be signs of recurrent cancer.

Potential Chemotherapy Effects Long-term Effects

• Cognitive impairment • Fatigue • Ovarian failure with or without menopausal

symptoms • Sexual dysfunction • Change in libido

• Infertility • Weight gain • Obesity • Neuropathy (especially after taxanes) • Oral health issues • 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


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Chemotherapy for breast cancer can have many long-term and late effects.

Potential Hormonal Therapy Effects Long-term Effects

Late Effects


Tamoxifen • Hot flashes • Changes in menstruation • Weight gain • Mood changes • Increased triglycerides

Aromatase Inhibitors • Vaginal dryness • Decreased libido • Musculoskeletal symptoms/pain • Cholesterol elevation

Tamoxifen • Increased risk of stroke • Increased risk of endometrial cancer • Increased risk of blood clots • Osteopenia in premenopausal women

Aromatase Inhibitors • Increased risk of osteoporosis • Increased risk of fractures

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Hormonal therapies, including tamoxifen and aromatase inhibitors can have long-term and late effects.

Potential Targeted Therapy Effects

Long-term Effects


Trastuzumab • Increased risk of cardiac dysfunction

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Trastuzumab, a targeted therapy can lead to increased cardiac dysfunction.

Colorectal Cancer Survivorship Care


• 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

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Surgery can lead to long-term and late effects for colorectal cancer survivors.

Potential Pelvic Radiation Effects Long-term Effects

• Chronic diarrhea • Rectal ulceration/bleeding • Emptying problems/incontinence • Frequent bowel movements • Abdominal pain

• Localized skin changes • Urogenital/sexual dysfunction • Gas

Late Effects

• Infertility • Bone fracture in sacral region • Second primary cancers in radiation field • Bowel obstruction


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Pelvic radiation can lead to long-term and late effects.


• Peripheral chronic neuropathy • Cognitive function deficits • Chronic fatigue

Late Effects

• Dental/oral complications


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Head and Neck Cancer Survivorship Care


• Shoulder function • Shoulder mobility, pain

• Oral health complications • Xerostomia • Dysphagia • Oral infections

• Musculoskeletal effects • Trismus • Impaired neck motion, pain • Stricture

Late Effects

• Spinal nerve abnormalities • Lymphedema • Neuropathy • Cervical radiculopathy

Cohen et al., 2016

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Surgery can lead to long-term and late effects for head and neck cancer survivors.

Potential Radiation Therapy Effects Long-term Effects

• Oropharyngeal • Xerostomia • Dysphagia

• Neuromuscular • Cervical dystonia

• Trismus • Musculoskeletal

• Shoulder dysfunction • Integumentary

• Radiation dermatitis

• Lymphovascular • Lymphedema

• Oral health complications • Xerostomia • Oral infections

Late Effects

• Vision • Premature cataracts

• Cardiovascular • Carotid obstruction • Baroreceptor failure

• Oropharyngeal • Xerostomia • Dysphagia • Dysarthria

• Pulmonary • Pulmonary fibrosis

• Neuromuscular • Cervical dystonia • Trismus • Brachial plexopathy • Cervical radiculopathy

• Musculoskeletal • Osteonecrosis

• Lymphovascular • Lymphedema • Carotid stenosis

• Sensory complications • Hearing loss • Ocular issues • Altered or loss of taste

Cohen et al., 2016

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Radiation therapy can lead to long-term and late effects.


• Neuromuscular • Sensor/motor

neuropathy • Sensory ataxia • Gait dysfunction • Vertigo

• Other effects • Hot flashes/sweats • Weight gain, abdominal

obesity • Fatigue/decreased

activity

• Anemia • Body hair loss • Dry eyes

Late Effects

• Neuromuscular • Cardiac abnormality, cardiomyopathy

• Other effects • Osteoporosis, fractures • Metabolic syndrome • Cardiovascular disease—possible

increased risk of myocardial infarction

• Diabetes; decreased sensitivity to insulin and oral glycemic agents

• Increased cholesterol • Increased fat mass and decreased lean

muscle mass/muscle wasting • Venous thromboembolism • Vertigo • Cognitive dysfunction

Cohen et al., 2016

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Prostate Cancer Survivorship Care


• 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

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Surgery for prostate cancer can have long-term effects related to urinary and sexual dysfunction.

Potential Radiation Effects Long-term Effects

• Urinary dysfunction • Urinary incontinence • Urinary symptoms (dysuria, urgency,

frequency, nocturia, dribbling) • Hematuria • Urethral stricture

• Sexual dysfunction • Progressive erectile dysfunction (ED) • Decreased semen volume

• Bowel dysfunction • Fecal urgency, frequency, incontinence • Blood in stool • Rectal inflammation, pain

Late Effects

• Urinary dysfunction • Urethral stricture • Hematuria due to small blood vessel

changes • Sexual dysfunction

• ED can be delayed in onset 6-36 months after therapy

• Bowel dysfunction • Rectal bleeding secondary to

thinning/small blood vessel changes of anterior rectal wall mucosa



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Radiation for prostate cancer can have long-term and late effects related to urinary, sexual and bowel dysfunction.

Potential Hormonal Therapy Effects Long-term Effects

• Sexual dysfunction • Loss of libido • Erectile dysfunction

(ED) • Other effects

• Hot flushes/sweats

• Weight gain, abdominal obesity

• Change in body image • Excessive emotional

reactions and frequent mood changes

• Depression • Fatigue/decreased

activity • Gynecomastia • Anemia • Body hair loss • Dry eyes

Late Effects

• Osteoporisis, fractures • Metabolic syndrome • Cardiovascular disease (possible increased

risk of myocardial infarction) • Diabetes; decreased sensitivity to insulin and

oral glycemic agents • Increased cholesterol

• Increased fat mass and decreased lean muscle mass/muscle wasting

• Venous thromboembolism • Vertigo • Cognitive dysfunction • Disease progression


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Hormone therapy (androgen deprivation therapy) for prostate cancer can have long-term and late effects related to sexual dysfunction and other metabolic effects.

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



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Active surveillance or watchful waiting can lead to effects on prostate cancer survivors, such as stress, anxiety and worry; risks associated with repeat biopsy, PSAs and DREs and disease progression.

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

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PCPs should play an active role in the care coordination of prostate 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. The ACS guidelines provide recommendations on the role of PCPs in caring for cancer survivors.

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

http://bit.ly/1pz5nHa

http://bit.ly/1T6ymOK

http://bit.ly/1RnvXwA

http://bit.ly/1UH5FJg

Survivorship Continuing Education

Cancer Survivorship E-Learning Series bit.ly/PCPE-Learning

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The Cancer Survivorship E-Learning Series was developed for Primary Care Providers but has been completed by many oncology clinicians as well. The no-cost program offers CME and CNE. Each 1-hour module is self-paced and can be completed in any order. Modules include presentations by national experts as well as patient perspectives that highlight key concepts.

http://bit.ly/1Un0u1x




E-Learning Series: Module Topics

• The Current State of Survivorship Care and the Role of Primary Care Providers

Module 1

• Late Effects of Cancer and its Treatments: Managing Comorbidities and Coordinating with Specialty Providers

Module 2

• Late Effects of Cancer and its Treatment: Meeting the Psychosocial Health Care Needs of Survivors

Module 3

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The first three modules include: �Module 1: The Current State of Survivorship Care and the Role of Primary Care Providers The first module discusses models of cancer survivorship follow-up care, primary care provider’s role in providing care to survivors and an overview national efforts related to survivorship care. Larissa Nekhlyudov from Harvard and Anne Willis from the GW Cancer Institute present. Module 2: Late Effects of Cancer and its Treatments: Managing Comorbidities and Coordinating with Specialty Providers This module covers common late effects after treatment as well as how cancer treatment late effects may interact with non-caner comorbidities. Presenters include Terese Mulvey of the Southcoast Centers for Cancer care and Carrie Tilley from the GW Medical Faculty Associates. Module 3: Late Effects of Cancer and its Treatment: Meeting the Psychosocial Health Care Needs of Survivors The third module of the series identifies various psychosocial issues as well as the primary care provider’s role in follow-up psychosocial care. Lynne Padgett from the National Cancer Institute and Lorenzo Norris of the GW Medical Center present.


• The Importance of Prevention in Cancer Survivorship: Empowering Survivors to Live Well

Module 4

• A Team Approach: Survivorship Care Coordination

Module 5

• Cancer Recovery and Rehabilitation

Module 6

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Modules 4-6 focus on : Module 4: The Importance of Prevention in Cancer Survivorship: Empowering Survivors to Live Well The fourth module discusses prevention and wellness strategies and features presentations from Kimberly Peairs from Johns Hopkins internal medicine and Colleen Doyle from ACS who helped write the NUPA guidelines. Module 5: A Team Approach: Survivorship Care Coordination The fifth module focuses on care coordination, with presentations from Mary McCabe at Memorial Sloan Kettering and Ken Miller from Sinai Hospital of Baltimore. Module 6: Cancer Rehabilitation and Recovery Module 6 covers rehabilitation for cancer survivors as well as spirituality. The presenters are Julie Silver from Harvard and Christina Puchalski from the GW Institute for Spirituality and Health.


• Spotlight on Prostate Cancer Survivorship

Module 7

• Spotlight on Colorectal Cancer Survivorship

Module 8

• Spotlight on Breast Cancer Survivorship

Module 9

• Spotlight on Head and Neck Cancer Survivorship

Module 10

Presenter

Presentation Notes

Modules 7-10 focus on clinical follow-up care guidelines for primary care providers. Module 7: Spotlight on Prostate Cancer Survivorship: Clinical Follow-Up Care Guideline for Primary Care Providers This module covers long-term and late effects of prostate cancer and its treatment. Presenters include Ted Skolarus from the University of Michigan and Andrew Wolf from the University of Virginia School of Medicine, both authors of the ACS prostate cancer survivorship care guideline. Module 8: Spotlight on Colorectal Cancer Survivorship: Clinical Follow-Up Care Guideline for Primary Care Providers Module 8 discusses long-term and late effects of colorectal cancer and its treatment. Khaled El-Shami from the GW School of Medicine and Durado Brooks from ACS, both co-authors on the ACS guideline, present. Module 9: Spotlight on Breast Cancer Survivorship: Clinical Follow-Up Care Guideline for Primary Care Providers This module goes over the long-term and late effects of breast cancer and its treatment. Presenters include Patricia Ganz from UCLA (co-author of the ACS guideline) and Louise Chang of ACS. Module 10: Spotlight on Head and Neck Cancer Survivorship: Clinical Follow-Up Care Guideline for Primary Care Providers This final module covers long-term and late effects of head and neck cancer and their treatments. Presenters include lead author on the guideline, Ezra Cohen of UC San Diego, and Penelope Fisher from University of Miami, also a co-author on the guideline.


• Each module includes: – Survivor interview – Narrated presentations – Pre/post assessments – List of resources – One hour CME/CNE per module

Presenter

Presentation Notes

Each module of the E-Learning Series for Primary Care Providers includes an interview with a cancer survivor, two narrated presentations, pre- and post-assessments, a comprehensive resource list and one hour of CME or CNE credit 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

http://www.cancer.org/survivorshipcenter


http://bit.ly/1RzvjZM

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

mailto:[email protected]

mailto:[email protected]

http://www.gwcancerinstitute.org/

http://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

Documents

Cancer Survivorship Care