Frequently Asked Questions


Why do jaw cysts grow so quickly?

Jaw cysts can grow to a tremendous size within a few years. This is a reuslt of the secretion of fluid into the sac.

Should I be x-rayed for jaw cysts?

Jaw cysts should be treated when small.  The only sure way of detecting a jaw cyst is by x-ray. It is therefore sensible for regular x-rays at intervals recommended by your geneticist or oral consultant and this will be dependent upon the number of cysts within each individual.

My mother and I have had jaw cysts. Should my children be x-rayed?

Yes. The importance of jaw cysts is to have them treated when small so it would be sensible to have x-rays in this case.

What are ovarian fibromas?

They are solid benign lumps on the ovary which often become calcified. 25% - 30% of Gorlin women are affected by ovarian fibroma and/or calcification. They cause no problems unless they are large.

How common are ovarian fibromas in the syndrome?

Studies show that about 25% of women have fibromas.  They cause no problems unless they are large.  There is no evidence that they affect fertility.

Is there a rule on the frequency of ultrasound scans for fibromas/cysts?

There is at present no protocol for regular screening for ovarian fibromas/cysts. If the patient requested screening it would be advised that healthcare professionals with experience of Gorlin Syndrome did it.

If a fibroma is found does it normally have to be removed?

Only if it is causing problems, i.e. sometimes when the ovary twists round the pedicle, it can stangulate the blood supply. Usually the fibroma, not the ovary is removed.  Sometimes cysts develop on the ovaries during the menstrual cycle. These can be left and monitored unless they have an unusual appearance, in which case these too can be removed but only on the advice of healthcare professionals with experience of Gorlin Syndrome.

Do ovarian fibromas affect fertility?

There is no evidence to suggest that fibromas or cysts affect fertility.


 Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello.  We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support. 
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