Lisa Sylvest is a cancer survivor who never met her father Karl’s parents. They lived in Denmark with their other son and daughter. Growing up, Lisa simply knew that her grandmother died at age 54 of a ‘female’ cancer. When Lisa was in high school, Karl’s brother died of brain cancer, also at age 54. Time passed, Lisa entered nursing school and her father’s sister developed endometrial cancer. Lisa traveled to Denmark to meet her relatives face-to-face for the first time.
When her father was diagnosed with advanced colon cancer at age 68, Lisa was a U-M Health System nurse working in gastroenterology, which deals with stomach and intestinal disorders. Her professional training told her something odd was going on. Lisa decided another trip to Denmark was in order.
“When my dad got cancer, I already knew about Lynch syndrome, but since I was told my uncle died of brain cancer, and we didn’t know much about Lynch syndrome at the time, I didn’t connect the dots, even with meeting my Danish family for the first time when I was in college,” Lisa explains. “It wasn’t until years later that I learned my uncle died of colon cancer that metastasized to the brain.”
We know now that Lynch syndrome is a hereditary condition that greatly increases the chances of developing colon and other cancers, including endometrial cancer, earlier in life than what’s considered typical. But it wasn’t until Lisa was diagnosed at age 40 with endometrial cancer – the third generation in her father’s family with cancer – that she became convinced there must be a genetic link.
In 2006, Lisa attended a University of Michigan Health System Grand Rounds on Lynch syndrome in her capacity as a UMHS gastro nurse. It persuaded her to get genetic testing for herself and to encourage her family on both sides of the Atlantic to do the same. She and a sister both tested positive for the condition. Her brother and younger sister chose not to be tested.
“When my sister saw the test result, she went straight to her gynecologist, and thank goodness she did, because she had endometrial cancer. Today she is alive and cancer-free,” Lisa says. The two sisters traveled to Denmark in 2010 for a family meeting with their cousins to discuss genetic testing for Lynch syndrome. As a result, two cousins tested positive and one tested negative. Two other cousins have not been tested to date.
“It has struck me that my family is very lucky. Last September, I attended Mayo Clinic’s annual Living with Lynch Syndrome Symposium and met many with the condition who have had not one, but several cancers,” she says. “Families, community practitioners and the general public need to understand that Lynch is more than a genetic disorder that can lead to colon, rectal or endometrial cancer. It is complex, and we learn more about it every year.”
Lisa sees the benefit in regular networking and scientific updates in programs like the one Mayo provides for families who have genetic or familial links to colon cancer. She encouraged colleagues at UMHS to provide a similar opportunity for families within driving distance of Ann Arbor and became part of a planning committee. As a result, a day-long patient program, “Empower Yourself: Updates on Lynch Syndrome, FAP and Familial Colon Cancer” takes place Saturday, Oct. 11 at the Inn at St. John’s, 44045 Five Mile Rd., Plymouth, MI, from 8:30 a.m. – 3 p.m. A companion program for medical professionals takes place at the same time.
Anyone affected by Lynch syndrome, FAP (short for familial adenomatous polyposis, an inherited disorder leading to colon or rectal cancer) or Familial Colon Cancer is invited to attend the patient program. Registration is required and should be received by Friday, October 3, 2014; however, on-site registration will be available. Individuals: $75; Discount for Families is available. Families and health professionals can register here.
Take the next step:
- Register for the Oct. 11 program “Empower Yourself: Updates on Lynch Syndrome, FAP and Familial Colon Cancer.”
- Read about another family with Lynch syndrome in the U-M Comprehensive Cancer Center’s Thrive magazine.
- Learn about the Cancer Genetics Clinic at the University of Michigan Health System.
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