Where to begin? It was only recently, September 18th 2016 that I found out I had Lynch Syndrome. Genetic testing confirmed this. I am adopted so I had no hereditary history to work with. This journey to this discovery actually starts in 1996, March to be precise. I was 26 and married to my wonderful wife less than 1 year. I had been having gastrointestinal problems for over a year. I was in the U.S. Army and the doctors just wrote it off as gas or irritable bowel. I had gotten out of the Army in October 1995, so when I found blood in my stool I went to the VA. They did a colonoscopy the last week of March 1996. The whole time they told me it was probably a hemeroid or a polyp. What they found was a tumor that had almost completely block the bowel. I went into surgery on April 17th. They removed a tennis ball sized adinocarcinoma tumor along with the transverse colon. They also discovered a lesion on my liver, which turned out to be a metastatis. At the time I was staged at Stage IV and given 6 months to a year to live. The VA hospital didn't have any surgeons who could do the operation on my liver at the time. As it happened, on my first follow up appointment a surgeon from UCLA took my case and on June 17th, two days after our first anniversary I was back in for surgery to resect most of my liver. On the upside there were several surgeons in attendance who learned how to do liver resections which potentially helped a lot of other veterans who came affter me. It took me a year or two to recover both physically and mentally. Everything seemed fine and life went on. Eventually I became a firefighter and started working fulltime in June 2007.
Flash forward to December 2013, when I discovered I had basal cell carcinoma on my face. A relatively simple proceedure and not to damaging type of cancer. Had the cancer removed and my face repaired and didn't think anything of it. This was the calm before the storm, the warm up for the the parade to come. In Spetember of 2015, I was diagnosed with renal cancer. On December 1st, they removed my left kidney. Oh I almost forgot to mention the original incision scar that ran vertically along my abdomen had herniated, as the surgeon put it, the muscle tissue was swiss cheese. The repairs were made and six weeks later I was back on the job as a firefighter and even got promoted. Again everything went back to mostly normal. In July I went in to have a growth removed from my nose, it turned out to be a squamous cell carcinoma. Shortly after that I went in for a routine colonoscopy, that ended not so routine. they found a precancerous polyp, and adinocarcinoma. Luckily this one was a stage 1. The doctor that conducted the colonoscopy reccommended that I get a genetic test done. When we went to the surgeon to schedule the colon resection, we got the test done. On September 15th, 2016 they removed my colon connected the small intestine to the rectum. The surgeon came by on the 18th and gave us the preliminary results. I had Lynch Syndrome, confirmed by the genetic test. I should also mention that is the same day I was released to go home and finish my recovery.
So here I am, recovering from a major surgery and preparing to go back to work at the end of October 2016 annd resume my duties as a Lieutenant on my Fire Department. Until then, I have a lot to prepare for, getting with doctors to develop a care plan, get the information to my children and my sister. Like every other time I get knocked down, I get up dust myself off, smile and get on with my life. Having Lynch Syndrome really doesn't change much, it just adds a few more steps to my cancer screening processes each year.
We would like to thank the talented genetic counseling student, Brianna McDaniels for creating this PSA about Lynch syndrome , AliveAndKickn and The HEROIC Registry for her genetic counseling studies at Emory University School of Medicine. Please share!