Gorlin Syndrome Group

Anybody got any tips for dealing with the emotional roller coaster of surgery?

I've had Gorlin's diagnosed for 11 years but BCCs for 20 years. I've just joined this group because of the following problem: I used to be able to have a lesion removed in the morning and go to work in the afternoon. Things have changed and now I get a bit angry when I'm told I have to have an op (not with surgeon - usually my poor partner). This time I had 4 lesions biopsies, all came back positive, two removed by one surgeon, told I had to have a wider excision and a skin graft a week later. I burst into tears and then cried again when I went to see the nurse to get the stitches out! I'm a man in his 50s and I find this tough! There us no psychological support where I go for treatment.

7 Replies

Hello Hebden Potter,

I know what you mean about the lack of support: this condition is enough to make anyone cry ..... (and why shouldn't you.)

Your story raises a lot of questions. First, Are you in U.K.? What town?

Do you have biopsies for every lesion?

Who is telling you you have to have an op?

Is you care handled by a multidisciplinary team?

Sorry to bombard you, but all of these things affect your situation.

Don't be afraid to sound off .... it does us all good to have a rant now and again :~).

Do you know about Gorlin Syndrome Support Group at


and Gorlin Syndrome Group at


You aren't alone!

Waiting your answer,



Thanks for your reply. I have my treatment in Central Manchester. I've been under a dermatologist and an eye surgeon. I've also seen in ENT surgeon there in the past. They all seem to me to be very good, but I don't think there is a multidisciplinary team, in the sense of the dermatologist and eye surgeon meeting and discussing my care. I have lesions biopsied because in the past things have been chopped out and turned out to be small sebaceous cysts and not basal cell cancers. Imiquimod, 5FC and PDT have not worked for me, that's why I have surgery.

My question, and why I joined the Gorlin group, was more about how to cope psychologically.



Sorry for the late reply. (Tho' you first Q popped up in my inbox, the second one didn't !?)

Right. Time to come clean. My connection with Gorlin Syndrome Group (GSG) is that my wife has GS and has had more than 100 BCC's removed by various means. (I am also the Treasurer and Trustee for GSG.)

As far as I can see you are in the best place (geographically that is). The leading GS medical practitioners in U.K. are based at Royal Infirmary Manchester.

Now the hard part. If I knew how to advise someone on coping psychologically, I'd be selling it for a pound a bottle :~).

If it is of any comfort your difficulty is shared

Follow either of these links (copy/paste) and they will take you to the results of a very recent survey which highlights the problem.


(via GSG Website)


(direct to the PDF)

Notice the names and locations of the lead clinical specialists. Are they involved in your treatment?

Have a long browse through the GSG website. (I know it looks a bit 'dense' but there is good stuff in there.)

That's enough from me for now.

Keep in touch

V (I think we're supposed to keep up with these pewsodonyms.)


Many thanks V. I read the survey and your site before I joined. There is some cold comfort in the survey in that I am not alone in feeling so bad from time to time. I am under Dr Lear and also a really good occuloplastic surgeon at the Eye Hospital, next to MRI, called Mr Atayullah. I don't the departments organise events for patients to support one another though???



I don't suppose they do. Patient confidentiality perhaps?

After 'our' last hospital visit I suggested to my wife that she could make a big(ish) poster to put up in the reception/waiting area to see if there is interest in creating a group for local contact/support.

Then we could gang up and see what psychological backup could be squeezed out of the system(?)

(It's still under consideration here.)

BTW do you see other HealthUnlocked messages?

I had one from gemstar1984 pop up in my inbox. Never had any before and now 2 in one week.




V - I would go to a group like that if it existed- I mean a group primarily aiming to give one another support.



i have been having surgery since i was tiny, my mum and family is probably the greatest thing i could take with me for comfort... although, the stitches part didnt go to well for me. I was having a shunt op done for hydrocephalus and a few weeks later i went to get the stitches removed and fitted my poor mum had to hold me down whilst the nurse panicked and went to find a doctor. i also had my first 'cancerous lesion' removed and i was awake under general and ive never been so scared in my life, they covered my eyes because of the light and it was actually fine but if my mum hadnt have been there i dont know what wouldve happened.


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