Five Categories of Childhood and Adolescent Cancer Survivorship

The CAC2 Survivorship Working Group assembled this document to help categorize survivorship issues for the community.  It is by no means an exhaustive list, but it gives examples of some of the challenges that survivors face in each of the categories that our group has identified.

EDUCATIONAL:

• • Academic Success – how to achieve it, partner with the schools, how a family can encourage it from home
  • Core Competencies – Prepare and Share with School Counselors, Educators, School Nurses, Doctors, Child and Adolescent Therapists, etc.
  • Developing plans to help students
  • Individualized Education Program (IEP) vs. 504 Plan
    • Emphasize plans need to mature into a 504 before graduation
  • Individuals with Disabilities Education Act (IDEA)
  • Learning Difficulties and Disabilities
  • Neuropsych/Psycho-Ed Evaluations (baseline, follow-up, insurance coverage)
  • Scholarships, Paying for an education
  • Transition from Elementary to Junior High/Middle School, Junior High/Middle School to High School, and High School to College or High School to Career

FINANCIAL, ECONOMIC, EMPLOYMENT:

• • Career Development, Support, and Planning
  • Disability, SSI, SSDI
  • Financial Assistance, Grants, Charitable Organizations for Survivors
  • Housing  
  • Legal Issues
  • Unemployment

MEDICAL CARE, HEALTH INSURANCE:

• • Affordable Care Act
  • Alternative and Complementary Medicine 
  • Childhood Cancer Survivor Clinics, But Also the Lack of Them
  • Dental Bills, Insurance, Inadequate Coverage
  • Follow-Up Care – Survivorship Guidelines, Long-Term Studies
    • The current protocols in place for long-term follow-up typically do not extend beyond 5 years.  COG Has the Long-Term Follow-Up (LTFU) Guidelines, but they are quite general.  Thus, it is very difficult to be followed and to have established protocols past that time.  Furthermore, for older survivors, there is typically nothing in place and we often can get lost in the system.  Additionally, many adult survivors may not have had any exposure to long-term follow-up, and may not even know or be educated on the care they need or the possible late effects that they may have now or could encounter in the future.  One way that this could be helped in the future is by the establishment of childhood cancer survivor clinics at every major medical institution.  Also, organizations need to follow and study long-term survivors so that they know how to treat all of the survivors in the future!
    • Finding a Healthcare Team After Treatment
  • Health and Life Insurance
  • Healthcare – Finding and Paying for It, Medicare and Medicaid
  • Hearing Loss – Insurance, Inadequate Coverage, Paying for Hearing Aids
  • Medical Records – Keeping, Organizing, etc.
  • Prosthetics – Needing multiple prosthesis and paying for them
  • Survivorship Guidelines, Studies

PHYSICAL: 

• • Aging, How It Affects the Health of Survivors (30 Years and Up)
  • Amputation
  • Autoimmune Diseases
  • Bladder Health and Issues
    • Neurogenic Bladder
  • Bone Health and Issues 
    • Osteoporosis/Osteopenia
    • Osteoradionecrosis/Avascular Necrosis
  • Breast Cancer
  • “Chemo Brain” (Can Occur For Many Years)
  • Chemo-Induced ADHD
  • Chemotherapy Late Effects and Issues
  • Colorectal Cancer
  • Dental and Oral Health and Issues
  • Diabetes
  • Digestive and Gastrointestinal Issues
  • Disability, Social Security, SSI
  • Endocrine and Hormonal Issues and Disorders
    • Adrenal Function (Central Adrenal Insufficiency, Etc.)
    • Pituitary Function (Hyperprolactinemia, Hypopituitarism, Etc.)
    • Thyroid Function
  • Eye and Vision Issues
  • Fatigue
  • Follow-Up Care – Long-Term
    • The current protocols in place for long-term follow-up typically do not extend beyond 5 years.  Thus, it is very difficult to be followed and to have established protocols past that time.  Furthermore, for older survivors, there is typically nothing in place and we often can get lost in the system.  One way that this could be helped in the future is by the establishment of childhood cancer survivor clinics at every major medical institution.
    • Finding a Healthcare Team After Treatment
  • Genetics and Hereditary Factors
  • Growth Hormone Treatments and Deficiencies
  • Hearing Loss and Impairments – Auditory Processing Delay, Tinnitus, Etc.
  • Heart, Cardiac/Cardiovascular Health and Issues
    • Atherosclerosis
    • Cardiomyopathy
    • Superior Vena Cava Syndrome
  • Hepatitis
  • Immunizations/Vaccinations
  • Immunotherapy Late Effects and Issues
  • Infections
  • Kidney/Renal Issues and Disorders
  • Limb Salvage
  • Liver/Hepatic Issues and Disorders
  • Lung and Pulmonary Issues and Disorders
    • Asthma
    • Lung Transplant
    • Pulmonary Fibrosis
    • Restrictive Lung Disease
  • Metabolic Syndrome
  • Migraines, Possibly??
  • Neurological/Cognitive Development
    • Cognitive Delay/Deficit
    • Executive Dysfunction
    • Learning Disabilities
    • Response Inhibition
    • Sensory Deficits
    • Speech Deficits
    • Working Memory
  • Opsoclonus Myoclonus Syndrome
  • Pain – Chronic, Management of It
  • Paraneoplastic Syndrome
  • Peripheral Neuropathy
  • Physical Activity, Diet, Exercise
  • Physical Limitations 
  • Radiation Fibrosis Syndrome
  • Radiation Late Effects and Issues
  • Raynaud’s Phenomenon
  • Relapse and Recurrence Fears
  • Reproductive Issues: Adoption, Dealing and Coping with Childlessness, Early/Precocious Puberty, Impact of puberty on Entire System, Infertility
    • Male: Sperm Reduction/Damage, Testicular Damage
    • Female: Early Menopause, Pregnancy Difficulties and Challenges, Sexual Health and Sexual Effects
  • Skin Disorders
  • Sleeping Issues – Insomnia, Nightmares, Sleep-Disordered Breathing
  • Spinal Deformities and Issues – Scoliosis, Kyphosis, Lordosis
  • Spleen Health and Issues (Asplenia)
  • Stroke and Cerebrovascular Issues
  • Thrombotic Microangiopathy
  • Transplants – Stem Cell, Bone Marrow, Tandem
  • Vision Loss and Impairments

PSYCHOSOCIAL:

• • Anxiety
  • Anger Management
  • Body Image
  • Cognitive Processing Challenges and Delays
  • Communication Struggles
  • Coping – Poor Skills, Negative Options
  • Depression
  • Executive Function Disorder (EFD)
  • Growing Up Too Fast, Feeling Older than Your Actual Age
  • Lack of Medical Care – Losing Faith and Removing Oneself from the Medical Community, Not Sharing Symptoms and Denying Health Issues
  • Life Skills Challenges
  • Managing, Understanding, and Acceptance of Lifelong Healthcare Issues
  • Marriage and Divorce
  • Neurocognitive Issues
  • Obsessive Compulsive Disorder (OCD)
  • Parents – Dealing with their Stress, PTSD, Being Overprotective, Etc.
  • Post-Traumatic Stress Disorder (PTSD)
  • Quality of Life
  • Relapse and Recurrence Fears
  • Relationships
  • Scanxiety
  • Scars – Emotional Aspects
  • Sexuality
  • School – Returning to School, dealing with bullies
  • Smoking
  • Social Anxiety/Isolation
  • Struggles with Being Different From Peers, Not Living a Life and Having Options Equal to Peers
  • Substance Issues and Abuse
  • Support Needed
  • Survivor Guilt
  • Transitioning Responsibility for Health and Medical Care from Parent to Survivors, Feeling Overwhelmed