So we have established that I am Caroline. I am 36 and have three children. One son and two daughters. I also have three Step children, two boys and one girl. We also have a jack Russell cross who, to all intent and purposes is like another child. I will tell you more about them later….
First my story……….
I started out life in the North East of England and that is where I am now. I lived in Kalmar, Sweden between the ages of 7 and 12. My parents business moved over to the UK in 1992 and we moved back.
I went to local a comprehensive school, where I met up with people that I had lost touch with from Primary school. I did well in school and came out with decent GCSE results. I then decided to start my A-Levels….they didn’t last long!! As a typical teenager I decided that this wasn’t for me and I went and started Leisure and Tourism at college. At this time I had also managed to get myself a little job.
At the age of 17 I went to the doctors with what I thought was a sty on my lower left eye lid….too be told that what I had was not a sty but a Basal Cell Carcinoma (BCC).
Not only did I have this one but I had what would appear to be another two conjoined on the bridge of my nose.
I was promptly booked in for surgery with a plastic surgeon and they were removed. I was tested for Gorlins syndrome at this point (1997) but what they knew about the syndrome at the time was minimal and I did not fall in to the criteria for a diagnosis.
At the age of 21, after two years of going backward and forward to the doctors with a large red area on the end of my nose, I finally managed to get a referral to see a dermatologist. Upon seeing the dermatologist she was horrified that I had been put off for so long with what was clearly, in her eyes, a large BCC. She referred me for Radiotherapy at the Newcastle Cancer centre. Whilst there I asked her if the red spots on my hand were anything I should be worried about. I explained that my Mum had hundreds of them and she said “Well there we go, with the BCC marker and the Palmar Pits, I can diagnose you with Gorlins Syndrome.”
Within six weeks I had Radiotherapy, as well as doing a lot of reading about this so called syndrome I had been tagged with.
Time ticked on and I found more and more BCC’s, post Radiotherapy I saw an increase in the amount I had but I had surgery and Radiotherapy to remove them.
At the age of 23 I fell pregnant and all was well, I had my son and got on with life.
At this point in time I hit what I can only describe as a brick wall. I was frustrated at what I was having to go through, I was angry and emotionally drained from it all. The decision to stop treatment and ignore the truth was not a sensible move to make. This was because when I did go back to my consultants I was to be told I was in double figures by quite some way, I was devastated.
So it all started again, surgery after surgery, graft after graft and they even went to the length of sewing my eye shut for six weeks.
By the age of 28 they had removed over 50 BCC’s and suspected BCC’s. I went to see the dermatologist who decided that seeing the genetics department down in Middlesbrough might be a good idea. They were looking in to rare conditions and ours was one they had an interest in.
So the time came, I had split up with my sons father and was in a relationship with Mark. We went to James Cook hospital and met the genetics team.
We were allocated a Doctor along with a genetics counsellor. Both were lovely and I would recommend their care to anybody to this day. However they told us some shocking news. They explained that I should never have had radiotherapy, as Gorlins patients are typically hypersensitive to radiation. Those areas would need removing at some point in the future.
We were tested and two weeks later we got phone call to confirm that my Mum, my Uncle and myself all have the gene and therefore have Gorlins. Proof if ever proof were needed x
Mark and I had an appointment a few weeks later to discuss options for any future pregnancies and shortly after followed Libby. Then it all started again, this time no radiotherapy.
MOH’s surgery was the treatment of choice this time, but that soon wore thin. Then came the discovery of 14 on my scalp, devastated wasn’t the word. My hair was my pride and joy and just like that the only course of treatment was a full scalp graft or trying a scalp dermabrasion. Either way I was shaving my head.
Four weeks before I got married I went in for the dermabrasion.
Since then (Dec 2013), I have been in and out every 3 months, alternating between check ups and surgery, The least I have removed in one go is 13.
I am sat here today having had more than 150 possible/actual BCC’s removed.
As I speak I am awaiting a surgical appointment but on my last visit I only had one suspect mark. As this is unusual for me the doctor wrote to my GP and said, “she presents with one but I will see her the week before her surgery as I highly doubt this will be it”. That was 6 weeks ago…I now have 5 to be taken away.Social Media