*Beware: There will be photos of stitches.
With Epidermolysis Bullosa there is more to just blisters and wounds, there is also the risk of cancer. I am often asked what signs to look out for and what to expect, etc. My very first bout with cancer was actually the age of 5 years of age. I was born with a very large awesomely shaped birth mark on my left hip. My mother was not thoroughly informed about the risks of skin cancers due to Epidermolysis Bullosa constantly changing the skin. My birth mark started out with smooth edges and was a light brown, but then the edges became more rigid looking, and the coloring turned a deep brown nearly black in color. It started to take over my entire hip. After much worry, my mother took me to specialists in NYC for a biopsy. The pathology report came back stage II Melanoma.
Doctors actually had to take a lot of my left hip area, which would have left me with a giant sunken wound and noticeable disproportion. Doctors discussed how they needed to take a skin graft from my left thigh. Little did we know the graft site would not heal for next 15 years–that in itself is a risk of mutation and becoming cancerous later. My hip healed rather well with the occasional breakdown on and off. It’s important with EB to carefully discuss grafting with your own skin. It may or may not heal, depending on the depth, and whether or not they can do a closure of the grafted area. I would recommend to talk over “artificial” skin graft options (e.g. INTREGRA : http://www.ilstraining.com/idrt/faq.asp).
Doctors then recommended removing every last mole upon my body. As a 5 year old, it was challenging for me to accept doctors pricking and cut parts of [“good” — skin simply not as broken down yet by EB yet] skin off of me. Believe me, I fought like a wild boar. Understandably, I did have stage II Melanoma, and it was for precautionary measures. One of the moles they removed was on my face, which actually grew back approximately five times its normal size over a 15 year period. The pigmentation of mole started to scattered across my left cheek. It was slowly getting larger and larger overtime. I had two doctors perform biopsies a few times, the results came back benign–wonderful! But, I had a persistent mole that wanted very much to remain part of me, and only kept growing. What if it hadn’t stopped growing? What if it mutated into cancer later? These were questions I had to ask myself.
Another doctor recommended a wonderful plastic surgeon that would remove my persistent friend off my face. It was rather nerve wrecking having someone cut into my face. If something like a benign mole doesn’t stop growing, I would highly recommend having a doctor remove it entirely. The sooner the better! With EB especially, the chances of it mutating into something cancerous, doubles.
Luckily, I didn’t need any skin graft because it was small enough for a closure. An incision closure was necessary as the doctor went rather deep–on my face, at that.
Excuse the poorly taken photos. These photos are over 10 years old.
This photo was one of the last photos of my cheek before surgery.
Unfortunately, I don’t have an close-up snapshot of the mole itself.
It didn’t look bad from afar, but the surrounding area of
the mole’s pigmentation was spreading into a strange gray
hue over my cheek.Every year the mole changed in shape and size.
This was probably a week after or so after surgery after the
black and blue bruising and some swelling subsided.
The photo doesn’t capture how much the cheek is protruding.
The protrusion was necessary to make sure when
it fully healed, it would not cause a crater in my face.
It did cause my left eye to be pulled down a
bit for awhile, but after the skin loosened up,
it went back to normal.
Two months later from the photo above. The swelling went down a lot.
It was nearly flat and back to it’s normal natural state in shape.
I was extremely blessed to find a good plastic surgeon. Always feel comfortable with your doctor. A doctor that listens to you. Never feel like you need to make a decision right that moment especially if it isn’t an emergency. My surgery decision took years because I wanted to take caution knowing how likely growths turn cancerous with EB.