Gorlin,s, how long to diagnose ?

[cooneyzola]

I am 67 years old and was diagnosed with skin cancer in 1972.Ever since then i have had about 50 lesions,they have all been positive BCC,s.My last session started in November 2013 and finished after 14 months.I started with 2 suspected lesions,both were found to be positive and were eventually removed.During this period another 2 appeared now totalling 4.Bi-ops were taken and both were found to be positive.One of the lesions was on the right side of my nose,that was the second time in the same place, but ,during the period of ops another lesion appeared on the same place.This was the 3rd in the same place.Sum total in last session,7 positive BCC,s,7 ops. I am explaining this way because in the past from seeing my GP to completion of plastics it took 4/5 weeks.I bought this fact up last November to a dermatologist i was seeing and was told i must of slipped through the net.At the same time she asked if i had been tested for Gorlin Syndrome,my immediate question was,"whats that". Never heard of or been asked about it before.I have now been diagnosed with it,only took 42+ years and with reading a few threads,this is to my mind an extreme amount of time to "slip through the net". I do have 2 (Doctors words) massive cysts on my jaw of indeterminate age,have signs on my hands as well.I have also had impacted wisdom teeth removed about 25 years ago,i believe this is another sign of Gorlins.About half of my teeth have mysteriously GONE so i can only suspect this may be another symptom.Have any of you had a similar experience and what would i now expect from the medics.

My treatmeent up to 2013 has been,on the whole,very good although i did have a lesion on the outer side of my right eye.I went to my GP(got rid soon after) and he just put it down as me being neurotic.When i eventually got treatment,3 months,i was told my sight would of been drastically affected within the next few weeks if it had not been removed when it was,a possibility of loss of sight were the exact words.

I will now shut up but will welcome any comments and hope this is a lesson as to what is and isnt possible

John

[Hebden_potter]

Hello John

It sounds like you've had a very distressing time for the last 43 years. I think the problem is that Gorlin's is very rare, so most GPs, and even dermatologists, will very infrequently see a patient with it. For this reason the diagnosis doesn't cross their mind when they see someone who has had many BCCs and they don't then look for the other clues, such as cysts in the skin on the hands.

Although I still hate the emotional roller coaster of having more surgery each time I have a new BCC, I find it reassuring to be under a centre of excellence, which for me is Manchester. This has been the main advantage of finally being diagnosed. I feel now that if I find a new lesion, on my face for example, I don't have to wait too long to get it treated. Another advantage of knowing about Gorlin's is being able to reduce exposure to sunlight and to X Rays. I hope that this will eventually mean I get fewer BCCs.

Good luck with everything.

Matthew

[Dillon15]

Hi John

Like yourself i was over 50 when I was diagnosed with this, and now have some huge scars as a result. As Matthew says keep out of the sun and make sure your Doc and Dentist are aware you really shouldnt have too many x rays. I get regular skin checks from the team at Oxfords Churchill Hospital who are very good.

Like you I had teeth cysts as a kid and some of the skeletal issues but again no one clicked what this might be

Be aware also that this is a genetic fault in the majority of those affected so do get any brothers and sisters checked as well

For further info have a look at the Gorlin Syndrome site as well

Good Luck

Nick

[Hidden in reply to Dillon15]

Interesting ready but not surprised that many individuals go un-diagnosed for so long. Diagnosis is getting better as more doctors become aware of the condition but there is still a good deal of awareness raising needed.

My recommendation and those of medical advisers it 'take care in the sun' get regular check ups for jaw cysts and basal cell carcinomas, and insist on early treatment to avoid complications.

[Hidden in reply to Hidden]

Should have read interesting reading and not 'ready'.

[cooneyzola]

Thanks very much for your reply.The cysts were not discovered until a few weeks ago,havent been diagnosed with them before.The strange thing is that i had impacted wisdom teeth about 30 years ago and they took a few years to spot.I suffered from bad headaches but,once again,was considered to be "neurotic" until my dentist did a full set of x,rays.All 4 wisdoms were impacted,not very comfortable to say the least.There seems to of been evidence of something over the years but,as i said in my first letter,nothing was hinted or researched.

I would like to add that i am glad that something has both been discovered and i am now able to get some form of treatment.I am also grateful to your forum for both taking the time and interest in me and my problem,it,s good to be in a group of like minded people

John

PS..As i hinted in my first communication,my last lot of treatment was both very fragmented and lax, total lack of urgency is the only way i can put it.i am not calling the quality of treatment but that it was just put down to."falling through the net",with my history this seems to be a bit of a cop out.

[jjandmichael2013]

Hi I been diognosed about 2 years ago.

although I livedown with ity whole life.

I am 45,and been dealing with similar issues like you.

through. Out my life I had many systs moved from jaw,amd the systs eat away. The.bones so that was worse.

I don't have barely any wisdom teeth left or gum lines.

I do have skin issues as well,but haven't treated that yet..

I have had many jaw surgeries.

Amd others.

your right it's not diognosed by Dr's because. It's a rare syndrome. .

sadly we won't get.much help Becz of that.

I heard of and have most of what u have.

except i.never. heard of it effecting the eye sight.?

[cooneyzola in reply to jjandmichael2013]

Hi jjandmichael. The eyesight problem was caused by the growth(BCC) not being removed when first reported.The lesion was growing into the outside of my eye and was very near my eyeball.That was the sight problem.If the lesion hadnt been removed in time it would of grown into the eye.My nose has been the biggest problem,i have probably had at least 20 lesions removed from it,a complete restructure of the schnoz.One place on the right side has been treated 3 times.I must just add for anyone that is reading this i give a massive thankyou to Preston ,Burns and Plastics department,they have been brilliant with me and i have the utmost respect for them all. John

[jjandmichael2013 in reply to cooneyzola]

Thanks for responding.

How is everything. With you now.

and you find any Dr's who fiimilier with the syndrome.

And where is this place you referring to

God bless

[cooneyzola]

jjandmichael2013..................... The hospital i refer to is Royal Preston,Sharoe Green Lane,Fulwood,Preston.PR2 9HT..01772 522518.. The Plastics department has a massive catchment area,it spreads from the Borders(Carlisle).Cumbria,Lancashire,across to Merseyside and i also believe as far down as Manchester.I my self live near Blackburn,Lancs.The doctor that started the ball rolling in my case was a Dermatologist from the East Lancs Hosp.Trust called Dr. Daly.She sat me down and more or less confirmed,even before tests or x-rays and explained exactly what i was up against.It just goes to show we still have some very dedicated staff in the NHS,lets hope we can keep it.

As i said in my first post it only took 43 years to find it,how time flies.(Sorry for the sarcasm)

Will keep in touch..John

[Hidden]

I too am in Preston and both my daughter's treated there for many years until my eldest moved on to Buckinghamshire. Have you checked out our link of Facebook facebook.com/groups/1272325... Lots of people on there.