1. Surviving Childhood Cancer: What’s Next? Trisha Kinnard PAS 646

2. ~ 1 in every 350 people in the US will develop cancer before the age of 20 ~ 1 in every 350 people in the US will develop cancer before the age of 20 In the 1960’s researchers found new therapies with combining chemotherapy drugs, radiation, and surgery. In the 1960’s researchers found new therapies with combining chemotherapy drugs, radiation, and surgery. These therapies have resulted in an increased number of patients with sustained remission and cures. These therapies have resulted in an increased number of patients with sustained remission and cures. More than 80% are expected to be long- term cancer survivors. More than 80% are expected to be long- term cancer survivors.

3. Chart from www.stjude.org/ltfu

4. What are the disadvantages? Physical Impairments Physical Impairments Emotional Impairments Emotional Impairments Cognitive Impairments Cognitive Impairments Healthcare Healthcare –Lack of knowledge

5. Physical Impairments Second malignancies Second malignancies Immune system suppression and infectious disease Immune system suppression and infectious disease Endocrine deficiencies Endocrine deficiencies Cardiac impairments Cardiac impairments Cardiovascular disease Cardiovascular disease Sensory loss Sensory loss Genitourinary disorders Genitourinary disorders Musculoskeletal abnormalities Musculoskeletal abnormalities Infertility Infertility Physical performance Physical performance Osteoporosis Osteoporosis Obesity Obesity Diabetes Diabetes

6. Emotional and Cognitive Impairments Posttraumatic Stress Disorder Posttraumatic Stress Disorder Suicidal ideation Suicidal ideation Social impairment: family, friends, relationships Social impairment: family, friends, relationships Intellectual and reasoning skills Intellectual and reasoning skills Education level obtained Education level obtained

7. Purpose of the Childhood Cancer Survivor Study Opportunity: to gain knowledge about the long term effects of both cancer and therapy, which can be used to form new treatments and to help with intervention strategies that will hopefully increase survival and decrease the amount of harmful late effects. Opportunity: to gain knowledge about the long term effects of both cancer and therapy, which can be used to form new treatments and to help with intervention strategies that will hopefully increase survival and decrease the amount of harmful late effects. Obligation: through research, providers will be able to educate patients about how their cancer diagnosis and treatment may affect their long- term health and can help providers use the appropriate follow-up care for each survivor, such as implementing proper prevention and early detection programs to monitor late effects. Obligation: through research, providers will be able to educate patients about how their cancer diagnosis and treatment may affect their long- term health and can help providers use the appropriate follow-up care for each survivor, such as implementing proper prevention and early detection programs to monitor late effects.

8. Late effect examples CNS tumors: physical, emotional, & cognitive impairments (esp if treated <3 YO) CNS tumors: physical, emotional, & cognitive impairments (esp if treated <3 YO) Secondary malignancies: 3-5% risk 20-25 year after initial diagnosis, which is 3- to 6-fold increased risk compared to non-childhood cancer survivors Secondary malignancies: 3-5% risk 20-25 year after initial diagnosis, which is 3- to 6-fold increased risk compared to non-childhood cancer survivors Post-puberty females: more likely to have infertility issues than pre-puberty because of fewer follicular stores Post-puberty females: more likely to have infertility issues than pre-puberty because of fewer follicular stores

9. Patient Education Promote a healthy lifestyle in childhood cancer survivors because of their increased risk of disease due to their cancer and late effects Promote a healthy lifestyle in childhood cancer survivors because of their increased risk of disease due to their cancer and late effects First, discuss adverse effects of risky behaviors (i.e. smoking) and address the topic as if patient did not have cancer so they can relate to their peers First, discuss adverse effects of risky behaviors (i.e. smoking) and address the topic as if patient did not have cancer so they can relate to their peers Second, discuss how survivors are at higher risk for health problems Second, discuss how survivors are at higher risk for health problems Intervention groups have been shown to raise awareness between risky behavior and poor health and to decrease numbers of people partaking in risky behavior Intervention groups have been shown to raise awareness between risky behavior and poor health and to decrease numbers of people partaking in risky behavior

10. Responsibility of the Survivor Summary of Cancer Treatment Summary of Cancer Treatment –Name of disease, date of diagnosis, site/stage of disease, relapses, date of treatment completion –Names and phone numbers of hospital(s)/clinic(s) where treatment was received and oncologist(s) –Name of all chemotherapy medicines received and specific information about certain chemotherapy drugs, such as dose and route of administration –Radiation therapy summary –Name and dates of surgeries patient has had –Whether patient received a hematopoietic cell transplant (bone marrow, cord blood or stem cell transplant), and if so, whether or not patient developed chronic Graft-versus-Host Disease –Names of any other cancer treatments that patient received (such as radioiodine therapy or bioimmunotherapy) –Names and dates of any significant complication(s), and treatments received for complication(s)

11. Role of PCP/PA Educate ourselves about late effects of cancer treatments (do not focus on just age-appropriate health maintenance) Educate ourselves about late effects of cancer treatments (do not focus on just age-appropriate health maintenance) Be aware of the Long-Term Follow-Up Guidelines for Childhood, Adolescent, and Young Adult Cancers Be aware of the Long-Term Follow-Up Guidelines for Childhood, Adolescent, and Young Adult Cancers Encourage patients to be healthy Encourage patients to be healthy Help patient to feel comfortable, so they are more likely to come back for F/U visits Help patient to feel comfortable, so they are more likely to come back for F/U visits Monitor appropriately for possible risks of physical, emotional, or cognitive impairments based on their previous cancer and treatments Monitor appropriately for possible risks of physical, emotional, or cognitive impairments based on their previous cancer and treatments

12. References http://www.stjude.org/ltfu http://www.stjude.org/ltfu http://www.survivorshipguidelines.org http://www.survivorshipguidelines.org