*WARNING: Read and scroll down at your own risk. There will be graphic content below. Please do not write me saying I should delete such content. I put this up as people have been curious to know and see how skin cancer develops in Epidermolysis Bullosa. Thank you!
At the age of 14, it was a typical day for me at my computer, chatting online and playing games. I remember I was getting up from my desk, to my right there was a small sharp-edged metal table. In my haste, I hit my knee right on the edge of the table. I hadn’t felt pain yet because it was already numbed from adrenaline. I just remember thinking I was fortunate to have a bandaged knee already, giving it some cushion and protection from the contact of the metal. A few moments later, my knee started bleeding. I had no wound nor blister previous to the hit. I went to tend to my banged up knee which revealed a pretty deep gash. I did not think twice about it, figuring it was going to heal like any other wound.
A few weeks later, the wound was not healed. Wounds from blistering or from an injury usually heal within a week with proper care. The wound was becoming strange in appearance, it was perfectly circular. Its size was exact of a quarter coin.
Weeks turned into months. The wound was still not healing. It was different from my non-healing wounds. The texture, shape, growth, scent, etc. It continually grew in size. The texture was becoming more cauliflower-like with a deep split down the middle. I was also noticing I didn’t have much feeling by touching the growth itself anymore. Deep down I knew there was seriously wrong leading me to hide it from my mother. Funnily enough, my mother was my primary caregiver in my wound care. Hiding it from her was challenging, but it worked for a full year or so. I would help dress specifically that knee each dressing change. You would think the burden was too hard to bear, and I would give up to show her. My fear continued the cycle.
Eventually, the dressing used to cover my wounds from sticking to my gauze, was becoming too small to use on “wound”. We used a dressing called Telfa pads, size 3″x4″ for my knees at the time. Not only was the “wound’s” edges started becoming visible with the pad on, the height of it was increasing. It was no longer flat and smooth like most healthy wounds were. I had to break down and reveal it my mother. I slowly removed the dressing, revealing this monstrous growth. She was shocked and speechless. My mother thought I was simply helping with my wound care. I felt guilty hiding it from her, but I was afraid and I did not wish to further worry her with my skin problems.
Undoubtedly, I conditioned my mother not to take me to the doctor just yet. The fear was gripping hold of me so intensely. I kept hearing a small voice inside my head how serious this is going to turn out. My mother kept trying different medicinal washes for my knee. Nothing worked. The scent was increasingly getting worse. I stopped leaving my home because of it, isolating myself from others. Nothing helped the aroma, lack of a better term, of death. I was sickened to my stomach everyday by it. I wanted to disappear altogether. Not even a long soak in the tub could combat it.
The growth was becoming heavier and more foul overtime. My entire leg was losing circulation, growing cold to the touch in some areas. I was losing more and more weight that I couldn’t explain. There was nothing more my mother, or I could do. It was out of our control. My mother made a doctor’s appointment with my General Physician that had been my doctor since I was 2 years old. My anxiety was through the roof about the whole ordeal. Silly of me, I didn’t want to be a disappointment anyone, when it was not even my fault.
My doctor was a very compassionate doctor that was always concerned about my wellbeing. He was always pleasant and full of smiles. After I undressed my knee, his face lost life. He actually took several steps back to lean upon the wall behind him. He was silent, for what felt like an eternity. I had never seen a doctor react like that especially a doctor that had many years already under his belt. He calmly told my mother that I need to be admitted, immediately.
I was admitted into a room in complete isolation. My room was the smallest and less entertaining room. They sent an infectious disease team in all suited up. They treated me as if I had an eating flesh bacteria. They took swabs of the growth, and assured me they could get the area healed without an issue. Deep down inside, I didn’t see where that could be possible. The results of the swab came back inconclusive. They did several more swabs throughout several days. It was a painfully long period of no answers. Finally, they discovered I had a staph infection and fungus growing rapidly in my knee. They started me on four different IV and oral antibiotics, two of which where every 4 hours. I was pleased to know my infection was going to be treated. Around day 7, they sent in a plastic surgeon who was put on my case. He was a pleasant doctor, but insisted that other doctors should stop poking and prodding me to prevent further damage to my skin. The team of doctors wanted him to perform a surgical biopsy on my knee, but he was reluctant and advised doctors just send me back home. I could see his concern, undoubtedly, but we wanted answers. I had to wait 2 more days for another plastic surgeon to take my case, a doctor more willing to take chances.
After my hydrotherapy appointment, I was scheduled to meet the doctor. He met me in hydrotherapy as my knee was already undressed. He walked in and introduced himself. He immediately looked at my knee saying, “This is a tumor. I wouldn’t be surprised if it isn’t cancerous.” I hadn’t heard the word cancer in so many years. When I was 5 diagnosed with Melanoma, it didn’t occur to me the seriousness of cancer. Seeing how large this tumor was, I could only hope God would perform a miracle.
The results were in: Squamous Cell Carcinoma. I had old videos of my SCC, but I have no way of transferring them digitally. I searched for the best photo online that looked exactly like my tumor: WARNING: Click only if you can handle VERY graphic images. My giant cauliflower friend was a seriously aggressive case of skin cancer. My doctors told my mother it had more than likely metastasized through my lymphatic vessels to neighboring lymph nodes. I did have a very swollen and painful lymph node, that was bigger than a golf ball in my groin region. I was given one year to live.
The big surgery removal took 6 hours. My plastic surgeon said the tumor pretty much peeled off without much effort. The infection embedded underneath actually knocked him and the OR team off their feet with surgical masks. He said it measured as big as a newborn baby’s head. The cancer rooted and wrapped around so many nerves. One spot he had to go as deep as my tendon. It took as long as it did because they had map out my cancer, and perform frozen sections of hundreds of spots to be sure they were removing enough skin where the cancer had been growing. They were amazed after removing two massive lymph nodes, there were no cancerous cells found.
I remained in the hospital for nearly a month. One of the most emotionally, physically, and mentally draining month’s of my life. Within days of the removal of the big tumor, SCC was already popping up, growing so rapidly. Tumors, endless tumors, every 2 weeks for a while. There were many surgeries and precautionary procedures in-between (however, no chemo nor radiation), approximately 40+ surgeries just to save my leg and my life in total, over a 15 year period. I had SCC that spread to my tibia from my knee 10 years ago, and the doctor told me there was only a few millimeters of skin protecting the bone, and he would most likely need to take my leg. I remained prayerful, remained hopeful, and told them to cut away what they could without taking my leg.
I apologize for the poor quality cell photos above. Those were nearly 5 years ago of my last knee surgery, which was probably the biggest surgical wound I had in a long time. My plastic surgeon found multiple little spots. He felt better just removing as much as skin as possible. My current plastic surgeon always informs me that it will never heal, but it healed in 6 months with proper care and diet. He used INTREGRA :http://www.ilstraining.com/idrt/faq.asp as shown in the images. I found Intregra helped generate stronger skin plus it remained cleaner. There is not much skin to “play” with anymore, the bone is very close, but I am hopeful, everyday. I continue to kill cancer with smiles and giggles with amazing people by my side, and a wondrous God.
It is important to not allow fear take over. Get a biopsy with or without EB. I could have prevented so much heartache from my mother and myself. Between fighting for my life plus finding new doctors willing to listen to me, and not amputate my leg until there is no more to cut. I have had a doctor tell me, “I would cut off the whole leg, the whole thing looks bad.” Listen to your body. Find impeccably caring doctors that are willing to learn and advise with care. Don’t let anyone discourage you to stop fighting. I truly believe you can be your own best medicine with how you think.