My name is Annewil, I am 30 years old and live in The Netherlands. In 2010 at age 27 I learned that I had Basal Cell Carcinomas (BCCs). Two ‘normal’ moles were removed for ‘cosmetic’ reasons according to my doc and turned out to be BCCs. My gut feeling knew all along that there was something wrong. As long as I can remember I have had these pits on my hands, which turned out to be the ‘famous’ palmar pits.
Because of the multiple BCCs and palmar pits I got referred to a university hospital of Rotterdam. One of the first things they told me was that I was too old to be diagnosed with BCCNS. During this process a lot of doctors and trainees were surrounding me. I was feeling like a fairground attraction. They found a few spots which could be BCCs and made a plan for the removal of those spots. Also genetic testing was done, but no mutation was found.
Being told to avoid UV-light and (radioactive) radiation, I had difficulty performing my job as a laboratory technician in a hospital where radioactive assays were done. So I had to tell my team-leader about my condition and a couple of weeks later (August) we had a meeting with the staff advisor. They told me that my contract would be terminated by the end of the year. This was a big shocker, because I was in permanent employment!
The next months were very difficult for me; losing my job and hearing about the genetic disorder I have is life-changing and also the treatments that were planned for the next couple of months. My world existed of applying for a new job, surgical treatments, dealing with the fact that, at that time, our one year old daughter could also have BCCNS and I was referred to the oral surgeon.
In March 2011, I applied for a job as a lab technician for a company which specializes in floriculture. Within two weeks I got hired and started to work there. It is one of the best things that happened. The job is great. I have incredible colleagues. It is a lot of fun. I even developed a new hobby: photography. With the help of two colleagues I got inspired to create nice images! On a good day, with inspiration, the camera is glued to my hands (despite my daughter’s wishes).
Because new BCCs were showing, a surgery for five dental implants was planned and our daughter would begin her annual check-ups (brain-MRI, dermatology, pediatrician). I told the staff advisor of this company about my condition. They accepted me for the things I CAN do, instead of the things I CAN’T do like my former employer did!! That is such a relief!!!
The real downside of BCCNS is that the doctors advised to stop our family planning. We’re very lucky to have our little girl, for now she looks happy and healthy. People around us were asking when she would be getting a little brother or a sister, which was/is very painful at times. It’s not that we don’t want to have another child, but because the 50% chance of transferring BCCNS we decided to stop our family planning. Maybe in the future foster care of something like that can make it a bit easier for us.. But still, it’s tough when people can’t accept/don’t understand our decisions…
The checks I am getting are the quarterly dermatology checks and the annual dental implants check.
The last derm visit was April 22nd and the doc now trusts my gut feeling (because I’ve never been wrong before, concerning the BCCs). Four biopsies were taken, the only thing I want to know which treatment they will plan for me and when.
In a way, I am grateful for the things Basal Cell Carcinoma Nevus Syndrome (BCCNS) has brought me: a job which I love, a new hobby and an opportunity for self-development. Beside that, a large family on Facebook. J The sentence: “Consider yourself hugged!’ means the world to me. Thank you all!!