Should people with NF avoid having X-rays?
In response to a recent Facebook post, our medical team has provided the following information and links for the CTF Community.
A useful document called “A guide for Medical Imaging” gives an overview of the types of medical imaging and their amount of radiation exposure. It can be accessed here: https://www.arpansa.gov.au/sites/g/files/net3086/f/legacy/pubs/rpop/patienthandout.pdf
One thing to remember is that we are all exposed to small doses of background radiation every day. A quote from the document attached says reassuringly:
"The radiation doses from medical diagnostic tests are generally very small and rarely produce harmful effects. There is a very small increase in the risk of developing cancer later in life. As a comparison, the radiation dose from a typical chest X-ray is approximately equivalent to the natural radiation received in an aircraft flight from Sydney to Cairns or five days of background radiation from normal living."
The message is the same for all types of NF, essentially it is reassuring in that there is no proof of any additional risk above people who do not have NF. The only established risk beyond that of the general population is a small increased risk for NF1 intracranial radiotherapy in childhood. To put this in perspective, radiotherapy uses much larger doses of radiation than Chest or other X-rays (approximately 100,000 fold), and the risk of secondary malignancy in children with NF1 treated with radiotherapy is only slightly higher than in those treated without NF1.
So for all types of NF there is little evidence to suggest that clinically necessary X-rays should be avoided. Therefore if an X-ray is needed to better understand symptoms or guide treatment, it should be done within the limits of those mentioned in the document.