Here is a PDF (which can be printed) giving an example of the type of follow up necessary for a long-term survivor of childhood neuroblastoma:
| Investigation |
Important aspects to screen for: |
| History |
General:
- Level of energy, general health
- Social/relationship/employment situation
- Depression
- Exercise
- Smoking, recreational drugs and alcohol ingestion
- Current medications
- List of physicians/HCPs involved in follow up
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Chemotherapy related:
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Previous chest RT:
- Does the patient smoke? (tobacco or marijuana)
- Respiratory symptoms: cough, shortness of breath, chest pain
- Energy level (at risk for hypothyroidism)
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Previous abdominal and pelvic RT:
- Abdominal pain and cramping
- Diarrhoea/constipation
- Change in bowel habit
- Rectal bleeding
- Bladder symptoms (dysuria, hematuria, frequency and any bladder infections)
- Women: menstrual cycle, menopausal symptoms, sexual function
- Men: sexual function
- Problems with fertility - unable to conceive
- Back pain, history of fractures - after RT to spine and intensive chemotherapy patients are more at risk for osteoporosis
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| Examination |
General:
- BLOOD PRESSURE It is very important to check neuroblastoma survivors' blood pressure on a regular basis
- Weight and height (Body Mass Index: BMI)
- General examination
- Check skin in previous RT field for cancers (e.g. basal cell carcinomas and more rarely melanomas)
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Previous thoracic tumor:
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Previous chest RT:
- Examine neck to exclude thyroid nodules
- Check for scoliosis of thoracic spine
- Respiratory examination
- Cardiac examination
- In females check for palpable breast abnormalities
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Previous abdominal and pelvic RT:
- Check for scoliosis as spinal growth may have been affected by RT
- Abdominal and pelvic examination
- In previous right sided tumors check for signs of liver/veno-occlusive disease
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| Blood work |
General:
- Routine blood work including blood count, electrolytes, BUN, serum creatinine and liver function tests
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Previous chest or neck RT:
- Thyroid function tests (at least free T4 and TSH)
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| Radiology screening |
Previous chest RT:
- Ultrasound scan of the thyroid every 3 years to exclude papillary carcinoma of the thyroid
- If survivor smokes, then increased risk of lung cancer in long term and intermittent Chest X-ray and CT scanning would be appropriate. There are no firm guidelines about timing of these investigations.
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Previous abdominal and pelvic RT:
- Ultrasound of the abdomen and pelvis every year or so may be helpful to exclude new masses and to ensure that there is no hydronephrosis affecting the remaining kidney
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| Special investigations |
General:
- Audiology testing to assess high frequency hearing loss
- Any adriamycin exposure - echocardiogram every 3 years or so
- Routine urinalysis ( e.g. to rule out proteinuria)
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Previous chest RT:
- Pulmonary function tests to look for restrictive defect
- If Adriamycin was also given, increased risk of cardiac dysfunction - echocardiogram every 2 - 3 years
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Previous abdominal and pelvic RT:
- Screening for infertility, hypogonadism and early menopause in women
- Screening for malabsorption may be important if there is a history of chronic diarrhoea
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Specialist
follow-up |
General:
- Many patients need to have other specialist physicians involved in their follow up with assessment every 1 - 2 years (e.g. nephrologist)
- Any long term survivor of neuroblastoma who has had intensive chemotherapy is at risk for early onset osteoporosis and should be seen in consultation by a specialist with expertise in this area when more than 10 years off therapy
|
Previous abdominal and pelvic RT:
- Gastroenterologist for chronic diarrhoea and malabsorption
- Orthopedic/spinal service for management of scoliosis
- Fertility specialist
- Endocrinologist for hypogonadism
- Immunologist may be important if there is splenic dysfunction
- PREGNANCY: Pregnant survivors of neuroblastoma may be at risk of premature birth, depending on the site of previous primary tumor and RT.
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| Supportive care |
Most neuroblastoma survivors manage very well, but might require support from:
- Family counselling
- Psychology
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| Advice |
General:
- Neuroblastoma patients treated for an adrenal primary will have almost certainly had a nephrectomy and should avoid activities that might damage the remaining kidney. It would be recommended to avoid contact sports.
- Urinary tract infections should be treated very promptly (single kidney more vulnerable to damage).
- The patient should seek immediate medical help if a new swelling (painless or painful) appears within the previous RT field as this may be due to a second malignant neoplasm.
Lifestyle:
- Advise about diet, exercise and lifestyle choices (such as smoking) which may further increase the risk of vascular disease.
- Diet rich in Vitamin D, calcium and dairy servings to reduce risk of osteoporosis.
- Skin previously in the RT field should be protected from the sun (increased risk for the development skin cancers).
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Previous chest RT:
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Previous abdominal and pelvic RT:
- Patients should avoid lifting heavy weights (spine more vulnerable to damage)
- Bone density should be checked roughly 10 years before one would normally worry about osteoporosis
- Important to maintain bone density (Vit D, dairy servings in diet and exercise)
- PREGNANCY: In the case of previous pelvic or lower abdominal RT, an obstetrician who specializes in high risk pregnancy management (increased risk of premature birth) should be involved in prenatal care.
- Early screening for colon cancer if any abdominal RT of 30 Gy or higher to the abdomen, pelvis, or spine. Colonoscopy should be performed beginning at age 35 years or 10 years
following RT (whichever occurs last).
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Patient information
(COG) Survivorship Guidelines |
General:
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After chest RT:
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After abdominal and pelvic RT:
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