Colon Cancer Due to Lynch Syndrome
My brother Jimmy lost his battle to colon cancer in 1995 at the age of thirty-six; he was the first amongst us to die from colon cancer due to Lynch syndrome. Several members on the paternal side of the family had suffered from various cancers but colon cancer struck my father, uncle, and brother. I knew my brother was too young to die from colon cancer and realized there must be a genetic component to what was happening in our family - I just did not know to what degree. I did not want his death to be in vain so in my twenties, I gladly began having colonoscopies every three years.
At the age of forty-eight, my second brother was diagnosed with stage 1 colon cancer in 2010 and had three feet of his colon removed at that time. Six months later on a follow-up colonoscopy, two more large malignant tumors were discovered and that is when his physician suggested he be genetically tested for Lynch syndrome. He tested positive for MLH1 and informed me of his results and asked that I be tested as well. I, too, have Lynch syndrome but have never had any cancer.
Lynch syndrome is an autosomal dominant mutation which may cause cancer in the colon, stomach, small intestine, liver, gallbladder ducts, esophagus, upper urinary tract, kidneys, pancreas, brain, skin, and if you are a male, the prostate. Women with this syndrome also are at higher risk for developing cancer of the endometrium, ovaries and breasts.
There are approximately 600,000 people in the United States with Lynch syndrome and yet, only around 5% of us know it. Lynch cancers tend to be deadly because they strike when you are young and many of the cancers do not exhibit symptoms until later stages. I believe the diagnosis has saved my life.
Genetic testing is a highly provocative and controversial topic these days – especially when it comes to certain genetic mutations. Some people just do not want to know what their genetic fates may hold for them especially if there is absolutely nothing they can do about it-specifically in the cases of Huntington’s Disease, Cystic Fibrosis, and Muscular Dystrophy; however, an early Lynch syndrome diagnosis could possibly save lives. There is usually a constellation of factors that influence one’s health – but in regards to Lynch syndrome, genetics is just one of them. I have been able to assume some control over the situation with annual screenings, prophylactic surgery and through changes to my lifestyle and diet. Ironically, my genetic nemesis has significantly improved my health and the quality of my life – knowledge is power!
Georgia M Hurst, MA
The photo was taken a couple of weeks ago in San Francisco. Megan is on the left and she is a genetic counselor at UCSF and I am on the right.
Are you at Risk For Colorectal Cancer?
- 2nd leading cause of cancer deaths for men and women combined
- Colonoscopies not only discover cancer, but can also stop cancer
- 50% of Americans still do not get colonoscopy reimbursement
- Colon cancer research is still vastly under-funded