Nevoid basal cell carcinoma syndrome: when to get help
Go through these in order and stop at the first one that applies. If you are reading this for someone else, answer for them.
1
Is any of this happening now?
Call 911
Call emergency services for a new seizure, sudden weakness, loss of consciousness, severe breathing difficulty, or a severe sudden headache.
Sudden intense pelvic pain with nausea or vomiting also needs emergency assessment because an ovarian growth can sometimes twist and interrupt its blood supply.
Other emergency signs, for anyone
Someone who is struggling to breathe, gasping, choking, or cannot get words out
Someone who has chest pain, tightness or pressure lasting more than a few minutes
Someone who has sudden weakness or drooping on one side of the face or body, slurred speech, or sudden confusion
Someone who is unconscious, or cannot be woken
Someone who is bleeding heavily and it will not stop with firm pressure
Someone who has had a seizure that will not stop, or does not wake up afterwards
Someone who has lips or skin that look pale, blue, grey or blotchy
Someone who you believe has taken an overdose or swallowed something poisonous
2
Is any of this happening?
Be seen today
Seek urgent medical assessment for repeated vomiting, a worsening headache, new balance problems, marked drowsiness, or a sudden change in behaviour, especially in a child known to be at increased risk of medulloblastoma.
3
Does any of this apply?
Book an appointment
Arrange routine medical or dermatology review if you notice:
A new or changing skin growth
A sore that repeatedly bleeds, crusts, or does not heal
New jaw swelling, dental movement, or persistent jaw discomfort
Increasing pain or changes near a previous cyst or operation
New pelvic pressure, swelling, or persistent pain
Concerns about screening, family testing, or treatment side effects
These concerns usually need timely assessment but are not emergencies.
Every sign above is quoted from the sofidex article on Nevoid basal cell carcinoma syndrome. If you are not sure, err upward — it is always reasonable to be checked.