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Gorlin Syndrome Group

Supporting patients, their families and carers
 
Registered Charity No: 1096361
Supporting patients, their families, friends and carers affected by Gorlin Syndrome
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Frequently Asked Questions
The question below are examples of the many enquiries made by patients.
We will endeavour to assist with any questions you may have. Get in touch with us via our Contact Us page if you have a question or are struggling with any aspect of the condition.
 
Can ovarian fibromas / cysts affect fertility?
Do I need to stay out of the sun?
  • In Gorlin Syndrome patients are at a greater risk of developing BCCs it is therefore recommended that people take care in the sun.  It is advisable to use a sun block or a very high factor sun screen.  It is also recommended that hats and long sleeves are worn to protect from the sun's harmful rays.
Is there evidence stress increases the chance of developing further basal cell carcinomas (BCCs)?
  • No hard and fast rule. In some people they do slow down with age, in others there is little difference.
How effective is laser treatment for the removal of BCCs?
  • Laser treatment is one of a number of treatments for BCCs.  It can be good on an early BCC, burning off superficial areas of the skin and leaving little damage.  If laser treatment is used on thicker lesions there will be scarring and lots of laser treatment on the face may become a problem.
Is there evidence stress increases the chance of developing further basal cell carcinomas (BCCs)?
  • Stress does not cause further BCCs but it cannot be denied that stress can damp down the immune system.
What is PDT?
  • PDT or Photodynamic Therapy is a relatively new treatment which is increasingly being used for the treatment of BCCs. It is a non-invasive technique involving the interaction of light with a photosensitizing agent.  The photosensitizer is applied to target tissue followed by exposure to the light source.
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.
Can I donate blood?
  • Yes.  Once blood has been donated it goes through a process which ensures it is safe for transfusion.
I would like children but I have Gorlin Syndrome.  What should I do?
  • There is a 50% risk that a child will inherit the condition. It is important to point out that you do have choices.  Speak to your Doctor or Geneticist, they will be in a position to offer information and advice about the condition, as well as offering guidance on pregnancy and child birth.
Does the size of the head mean problems during childbirth?
  • In pregnancy and childbirth 72% - 80% of women needed forceps or caesarean section during childbirth.
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.
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.
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.

  • There is no evidence to suggest that fibromas or cysts affect fertility.
 
 
Written and produced by Professor P A Farndon, Clinical Geneticist at the National Genetics Education and Development Centre UK, Jim Costello (deceased) & Margaret Costello, unless otherwise stated.