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Gorlin Syndrome Group


hello to you all again IT has been a while but sine our last post I am pleased to say my now 15 year old has had NO gorlin related health problems BUT last week she found a lump just below her left collar bone ...it is abou 5mm and moves all over the place ...our local doctor felt the best thing would be to remove it and get it checked BUT he tryed yesturday ...with NO success ..he thinks it has moved behind her collar bone now ??does this sound like some kind og boddie cyst or has any one out there had anything similar ...our doctor does not know what to do next ...thought you great people would have the best advice ...hope to hear from any of you soon ,,,

4 Replies

Hi, when I was young had similar lumps that came and went.They never amounted to anything so don't panic,but obviously get them checked out. Happy to here your daughters doing well.


many thanks 

fingers crossed 



Hi there

Yep as a gorlin sufferer i've had many of these and similarly freaked out when i was in my teens. Like Bobby mentioned below, your daughter will probably get many (of different shapes, sizes and loactions) and and they really aren't a big deal. Some stay, some go, the main thing though is that ALL are treatable and not dangerous (assuming they are linked to gorlin's of course).

If you are going to get it removed, spend some time to make sure you find a quality skin surgeon. The bad ones (and there are many) leaving a lasting impression. Once you've found a good one, stick to them and you'd be amazed at the difference in results.

I have had this 'thing' for almost 30 years now and am happy to give you any tips/ advice to help with the future treatment of your daughter. Just let me know if you need any help. Good help is hard to find (particularly in the UK) as the condition is so rare.

Anyway, best of luck, your daughter will be fine though. The condition is getting increasingly manageable.


that is very kind of you ...

we are awaiting 2 apointments one for a scan  ..made by the local doctor who tryed to remove the lump BUT lost it ...very small scar there and I thin will go with time..BUT he thinks it ay be a bot of bone   floeating around and thinks a scan may show what it is ???

BUt sadly we just had a check with our maine dental surgen DR.Langford...Midlesburgh hospital ...who has found another jaw cyst ...so opperation boked for this in June ...and he has given us a referal to a DR Carmicheal ...midlesburgh ..a skin specialist ..for a good check up ...

when we discovered she had Gorlins IT is hear and the kind help from others like you who have advised us all the way ..as you say NOT many people in the medical or dental services know much about gorlin ...and we too find it very important to find good sergions to deal with it ...

so thank you !!!!

and will keep everypne updated and will always check things out with you all ...who do know what things may be 

very many thanks 



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