Research and Surveys

Launch of Gorlin Syndrome Survey Results

Psychological impact of multiple cancer surgeries highlighted by new patient group research.

More support needed for people with rare genetic Gorlin Syndrome cancer undergoing repeat surgeries. 

The Gorlin Syndrome Group, campaigning to help people with a rare genetic skin cancer, today launched new research highlighting the singnificant impact of multiple surgeries on patients' wellbeing.

The survey, presented today at the European Association of Dermato Oncology (EADO) Congress, revealed that almost half (48%) of patients endure more than 20 surgical procedures although only 15% are offered counselling throughout diagnosis and treatment.  Furthermore, 51% of people undergo surgery every few months to manage their condition, with 49% saying these surgeries have a significant emtional impact.

The research conducted in people with Gorlin syndrome, which causes highly visible skin tumours, was published by the Gorlin Syndrome Group to raise awareness of the need for greater patient support.

The findings are particularly significant as 97% of patients undergo surgery to remove tumours, with 86% of patients suffering from tumours on their face, 60% on their arms or legs, and 52% on their chest.

"Quality of life is a real issue for people with this disease, not least because it requires such frequent surgery, as well as regular hospital check ups" said Margaret Costello, Co-founder, Trustee and Secretary, Gorlin Syndrome Group.  While emotional wellbeing is a core part of cancer care elsewhere, it is being unfairly overlooked in this group of people and must be addressed.  We hope this research further improves the understanding of this condition and leads to greater support for people with this life-long genetic condition."

Gorlin syndrome, also known as neviod basal cell carcinoma (BCC), is a genetic disorder that affects 1 in 30,000 people in the UK, which causes multiple  BCCs in all those with the condition, as well as nearly 100 features including jaw cysts and skeletal abnormalities.

Dr. John Lear, Consultant Dermatologist, Central Manchester University Hospitals and lead study author said: "This condition has a profound impact on patients' physical and emotional wellbeing, oftern causing hundres of skin tumours across a person's lifetime.  More support is needed to provide the treatment these people need; it is simply not enough to treat the physical symptoms alone."

To view full results of the survey following this link.


 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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