Wednesday, September 26, 2012

Be a Previvor!

September 26th is National Previvor day.

So “What is the world is a previvor?” you might say. Cancer previvors, according to glossary, “are individuals who are survivors of a predisposition to cancer but who haven’t had the disease.” Many people are aware of the BRAC genes that predispose a person to hereditary breast and ovarian cancer. There are many other genes or syndromes that can predispose you to cancer. One such syndrome is Lynch Syndrome which predisposes you to many different gastrointestinal tract cancers such as colon, rectal, gastric, hepatobillary, and pancreatic as well as endometrial, ovarian, ureter, renal pelvic, skin, prostate and some subsets of breast and brain cancer according to the website. If you have a family history of colon cancer or endometria/uterine cancer, especially at a young age, you could be at risk. I encourage you to read more about Lynch Syndrome if you have a family or personal history of any of the above cancers.

I am a previvor of colorectal and uterine cancer. I was first encouraged 11 years ago to have a colonoscopy by my family physician at the age 43 when I told him my sister who is just older than me was diagnosed with a cancer. I of course, being an oncology nurse for over five years, knew the importance of early diagnosis of colon cancer. The colonoscopy was performed and I was found to be free of polyps or cancer by a gastroenterologist who had taken my detailed family history which included three generations of colorectal and or endometrial cancer. I was told to have another colonoscopy in five years. Recommendations for colon screening for Lynch syndrome is every two years prior to the age of 50 and every year after the age of 50.

Four years later my oldest sister was diagnosed with endometrial cancer just as my mother and maternal grandmother had been in their late 40’s early 50’s. Bells went off in my head since my mother’s sister had also had a female related cancer in her 40’s. I consulted my personal gynecologist and told sure you can have a gene test to see if you have a predisposition to cancer. I was given a phone number that did not work. I subsequently changed gynecologist because he was found to be clueless about Lynch Syndrome. At about the same time, I had a skin lesion removed that was suspect for Muir Torre syndrome. Subsequently I was put in touch with a genetic specialist nurse who referred me to the chief of Gastroenterology at Baylor University Medical Center in Dallas for genetic testing. Genetic test showed I do have a gene mutation that predisposes me to Lynch Syndrome cancers. Shortly thereafter I had a hysterectomy to prevent endometrial/uterine and ovarian cancer and annual colonoscopies which led to a colon cancer scare when I was told I had colon cancer. Fortunately the polyp found at the time of my 2nd annual colonoscopy, though highly suspicious for colon cancer, was not diagnostic for cancer. Subsequently I had surgery to remove the suspicious area and have routine diagnostic procedures annually to evaluate for gastrointestinal, urinary tract and skin cancers.

I have had two skin lesions that turned out to be Muir Torre related cancerous that I probably would not have had evaluated if I had not been tested for the Lynch Syndrome gene.

I consider myself a Colorectal Cancer Previvor since the precancerous polyp was removed before it turned into a full blown cancer at the age of 49. I hope my story encourages you to evaluate your family history for the possibility of a familial cancer syndrome.

Lynch Syndrome genes are dominant genes meaning that you have a 50% chance of having the gene if one of your parents also had the gene. Remember! You are your own best medical advocate.

I apologize for being so wordy. I think it is important to know your family history. My sweet Mom died seven years ago from breast cancer. My aunt died 2 years ago after having being diagnosed with ureter cancer which is a Lynch Syndrome related cancer. My two sisters are healthy because they too get frequent followup and screening for Lynch Syndrome related cancers.

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