Lynch Syndrome was something the doctors in my small town definitely weren’t familiar with and it almost cost me my life. In simple terms Lynch Syndrome is a genetic issue that can cause a person to develop non-polyposis colon cancer at a young age, have a higher risk than normal for uterine, ovarian, or other types of cancer, and if you have this gene mutation your children also have a fifty percent chance of having the gene as well.
Diagnosis of Lynch Syndrome
In my case I was diagnosed because I developed colorectal cancer at the age of thirty two. I didn’t drink, eat red meat to a great extent, or any of the things that people associate with colon cancer. At the age of twenty five I went to three doctors because I was excessively tired, dizzy and fainting, and noticed a bit of blood when I went to the bathroom. I thought I had an ulcer because I was going to college, working full time, and caring for two children. I got various answers from the doctors. The general consensus was that I was hypoglycemic and anemic which would explain the exhaustion and dizziness. It did not explain the blood. The doctor told me that it could just be something I ate that made it look like blood and didn’t even do a test. He said I was too young for colon cancer and shouldn’t be concerned. Apparently, he has never heard of Lynch Syndrome. At that point I wasn’t really overly concerned because I had never heard of it either. By the age of thirty one, I was very sick and trying to figure out what was going on. Constant emergency room visits with a diagnosis of constipation became frustrating, expensive, and led nowhere. Keep in mind, I’d had x-rays of my abdomen and nothing looked strange. Two months after my thirty second birthday I went to a bigger hospital out of frustration and desperation. The pain was unbearable. I had a tumor so large it completely blocked my colon and had grown into the wall of my uterus. Life was about to change for me in every way imaginable.
After the tumor was biopsied and it was discovered that it was indeed cancer, I went to a colorectal specialist and I will never forget his words. He said, “You and your mother are poster children for Lynch Syndrome.” That told me that any doctor worth his salt who had done a complete workup, including background would have picked up on this. While genetic testing can identify the gene; it is expensive and generally costs upwards of ten thousand dollars. However, anyone whose mother and grandmother both had cancer of not just the colon but ovaries, uterus, or even breasts should consider testing. In general if three consecutive generations have developed this type of cancer, and at least one is under the age of fifty (me), it’s very possible you may carry this gene. If you have children they now have a fifty percent chance of carrying the HNPCC gene as well. This stands for hereditary non polyposis colon cancer. Many doctors aren’t aware of Lynch Syndrome at all. According to the American Cancer Society, new cases of colon cancer each year reach upwards of 140,000 and only three to five percent are attributed to Lynch Syndrome. That number may seem small and nothing to really worry about, but if it happens to you it definitely changes things.
For some reason colon cancer seems to be a taboo subject. There’s so much awareness about other types of cancer. That’s great but colon cancer seems to take a backseat. It is very deadly and often does not cause symptoms until it’s already spread to other organs in the body. I think people push colon cancer under the rug because it’s not polite conversation. No one wants to talk about going to the bathroom, or intestines, or colonoscopies. I’ve read articles and blogs where people say things like, “I’d rather die of cancer than live with a colostomy.” That’s shocking and tells us just how much value our society places on looking perfect. I have a colostomy and always will. I am no longer ashamed in the least. I’m alive and my children have their mother. Of course I would get rid of it if I had the chance but cancer patients can’t have transplants to my knowledge. I can only hope that someone will read this and bring it up to their doctor before they have an experience like mine. If awareness isn’t raised the cost could be your life. I almost paid with mine.