Basal Cell Nevus Syndrome

 Basal Cell Nevus Syndrome.  

Have you ever heard of it.  It's okay if you haven't, I didn't either until I was diagnosed with it in January of 2020.  

It all started in the year 2019 when I had a spot of basal cell skin cancer removed from my cheek.  To remove it I had to undergo Mohs Surgery.  The surgery was named after surgeon Frederic E Mohs in 1938.  It's a microscopically controlled surgery used to treat both common and rare types of skin cancer.  After removal of the tissue, the tissue is examined under a microscope for cancer cells.  That will determine the need for additional tissue removal.  

So, once the doctor removed the cancer I had to wait for an hour while it was looked at under a microscope.  If he didn't get it all, I had to go back for more scraping and another hour of waiting.  After my first surgery I was left with a great big, ugly wound.  Slowly it turned into a barely seen scar.  

Then during a follow-up appointment the doctor found another spot of cancer ... then another.  

"I wonder if you have Basal Cell Nevus Syndrome" - he said.  

Basal Cell whaaaat?

After going to a genetics counselor and having blood work done the results came back:  POSITIVE!  Yes, I had Basal Cell Nevus Syndrome, although some dermatologists call it Basal Cell Gorlin Syndrome.  

Basal Cell Nevus Syndrome is a very rare genetic condition, which is why you and I never heard of it before.  It brings an increased risk of developing multiple basal cell carcinomas.  That's right, I'm going to have to deal with this many, many times and for the rest of my life.  

I have lost count on how many spots I've had removed already and currently have about 10 on my face.  I go for a checkup to the dermatologist twice a year and most times he'll remove at least one for biopsy.  For the most part, because of this condition he isn't interested in removing all spots but he does want us to monitor and make sure they aren't growing.  He also doesn't see the need in doing a Mohs on each one that pops up, thankfully - I wouldn't have a face left if he did.  

If you look close enough you'll be able to spot three of them around the eye.  He wants to remove them at the next appointment in August 2026.  

I've already had two Mohs surgeries around the eyes where I had to be sent to a eye surgeon for reconstructive surgery since that area couldn't be stitched.  That wasn't the first time I had spots removed from my eye.  They'll scrape and burn the area and add a bandage.  

I have a face and body full of scars.  Whenever I talk about this with people they always say they feel sorry for me.  I don't, really.  I may have cried about it a time or two but I've never felt bad about it.  It is what it is.  I've never asked God why me.  Instead I've said why not me.  The reasoning is simple.  I've never been one who cared about looks.  Another person's appearance never mattered to me and I most certainly don't care what others think of me.  So, if anyone has to have this condition it might as well be me.  

The only part of this whole ordeal that scares me is the fact that my kids have a 50 percent chance of getting it too.  I believe my father has it.  So, that part is not okay with me.  

As much as I love being outdoors and under the sunshine I've learned just how important it is to wear hats and wear sunscreen.  It may not prevent a thing such as Basal Cell Nevus Syndrome but it can be effective in helping anyone.  I'll most definitely advocate for that from this point on.  

HOME