2.4 Survivorship

Survivorship is a phase of care, not a party at the end of treatment

A 16-year-old treated at age 4 for high-risk neuroblastoma received doxorubicin, cisplatin, and abdominal radiation. She feels "done," her local clinic closed the oncology chart, and no one has mentioned hearing, the heart, fertility, or who will see her at 21. Domain I.C tests whether the CPHON nurse can build long-term follow-up from exposures, not from a feeling that the cancer is over.

Cure is the goal; late effects are the durable cost. Survivorship begins at diagnosis in some models, but the exam's practical moment is the end of therapy: a written plan, a receiving clinician, and a family that can name risks without being terrified into skipping follow-up.

COG long-term follow-up principles

The Children's Oncology Group publishes long-term follow-up guidance used across North American pediatric centers. Principles that are testable:

• Follow-up is risk-adapted. A child treated with surgery alone for low-stage Wilms tumor does not need the same cardiac schedule as a child who received high-dose anthracycline plus chest radiation.
• Surveillance is organized by organ system and exposure (anthracycline dose, radiation field and dose, alkylators, platinum agents, HSCT, neurosurgery), not by a single "cancer survivor annual PET scan."
• Recommendations evolve. Use the current COG-endorsed or institutional pathway. Do not treat a specific COG version number as a pass/fail fact.
• Health promotion (activity, dental care, sun protection, immunizations, tobacco, HPV) sits inside survivorship, not in a separate wellness silo.

The nurse's job is to know which exposures drive which tests, and to get the child into a late-effects clinic that applies the current tables.

Treatment summary and survivorship care plan

These are two related documents; both should travel with the family.

Treatment summary (what was done):

• Diagnosis, site, stage/risk group, date of diagnosis and of end of therapy.
• Protocol name and treating center.
• Chemotherapy agents with cumulative doses that drive late effects (doxorubicin or daunorubicin in mg/m², cyclophosphamide or ifosfamide, cisplatin or carboplatin).
• Radiation: fields, laterality, dose, boosts (brain, spine, chest, abdomen, neck, total body).
• Surgeries, including nephrectomy, amputation or limb salvage, central-line history, neurosurgery.
• HSCT: autologous versus allogeneic, graft-versus-host disease, conditioning.
• Major complications: intensive-care stays, thrombosis, sinusoidal obstruction, significant infections.

Survivorship care plan (what happens next):

• Who is the late-effects clinician versus the PCP.
• Surveillance calendar: echocardiogram, electrocardiogram, audiology, pulmonary function, thyroid labs, colorectal or breast screening when radiation fields require them, neuropsychological testing.
• Vaccination catch-up status.
• Fertility, psychosocial, school/work, and second-cancer counseling.
• Emergency problems that still go to oncology (for example, a survivor still with a port, or very recent therapy).

A family should leave the end-of-therapy visit able to hand a new adult internist a document that lists doxorubicin 300 mg/m² and cisplatin with documented hearing loss, not a smile and "she had neuroblastoma."

Organ-specific surveillance the exam expects you to pair

Do not invent a universal echo interval as the only correct number; intensity and frequency rise with cumulative anthracycline dose and chest radiation. The testable claim is that echocardiography belongs in the plan after anthracyclines, not that every survivor is screened identically.

A 11-year-old three years off medulloblastoma therapy (craniospinal radiation plus cisplatin) who is failing math needs cognitive late-effects screening and neuropsychological testing, plus ongoing audiology—not reassurance that school trouble is unrelated.

Fertility counseling

Counseling starts before gonadotoxic therapy when feasible (sperm banking; oocyte or ovarian-tissue pathways where available and time allows) and continues in survivorship. Adolescents who were toddlers at diagnosis still deserve a private conversation at a developmentally right age: what was given, what is known, what is unknown, contraception if gonadal function recovered, and referral to reproductive endocrinology rather than "wait until you want children." Gender-sensitive, parent-inclusive but teen-private practice matters in AYA clinics.

Psychosocial re-entry

Survivors may have medical trauma, "scanxiety," social lag after years of isolation, sibling resentment, and financial stress. Re-entry to school and sport is a nursing coordination task: 504/IEP updates, fatigue, hearing-assist devices after cisplatin, and coach education after cardiotoxic therapy (no unrestricted elite training until cardiology clears). Depression, suicidal thinking, and substance use are screened; they are not "ungrateful survivor" behavior.

Transition from pediatric to adult survivorship (AYA)

Pediatric clinics do not own the survivor forever. Around late adolescence—timing is individual, not a magic 18th-birthday dump—the nurse plans:

• A portable treatment summary and care plan the young person can explain.
• Adult late-effects or primary care that accepts the document, not a random walk-in clinic with no echo order.
• Insurance, reproductive health, mental health, and how to access records.
• Self-management: the 16-year-old who still sits silently while a parent lists medications is not ready; teach in layers.

A 19-year-old ALL survivor walking into adult primary care without a cumulative anthracycline dose is a failed transition, even if the leukemia remains in remission.

Survivorship nursing is exposure-based surveillance plus a document and a receiving adult system. The CPHON nurse who only celebrates the bell has left half the work undone.