When Mike Dampf failed his Air National Guard fitness test, the active man knew something was wrong. Additional tests showed he had colon cancer. He was 37.
He had part of his colon removed, but a colonoscopy found a second growth in a different area. Dampf’s mother had been diagnosed with cervical cancer in her 50s. Her father died from a brain tumor in his 30s.
Dampf learned he has Lynch syndrome, a hereditary disorder that increases the risk of getting a variety of cancers at an early age — especially colon and endometrial, or uterine, cancer. To prevent more cancer, Dampf had most of the rest of his colon removed and is regularly screened for stomach, pancreatic, prostate, bladder and skin cancer. His teenage children each have a 50% chance of having the condition and plan to be tested after they turn 18.
“I didn’t want to live waiting for that next shoe to drop,” Dampf, 48, of Dodgeville, said of his second colon surgery in 2011. “You should know your risk so you can make informed decisions.”
Mike Dampf takes supplements to ease the symptoms of living without most of his colon. He is regularly screened for stomach, pancreatic, prostate, bladder and skin cancer.
About 1 in 300 people are estimated to have one of the genetic mutations involved in Lynch syndrome, making it more common than the BRCA gene mutations known for increasing the risk of breast and ovarian cancers, which are seen in about 1 in 400 people.
People are also reading…
But most people with Lynch don’t know they have it, doctors say, with a federal report putting the figure at more than 95%. The wide range of cancers involved, the lack of highly visible advocacy groups and the relatively recent availability of genetic testing to confirm the condition contribute to its low profile, said Dr. Jennifer Weiss, director of UW Health’s Gastroenterology Genetics Clinic.
Even many doctors don’t know about Lynch, Weiss said. “Families are presenting in so many different ways, it’s just not top of mind,” she said.
Increasing use of a related type of tumor testing to see if new immunotherapy drugs should be used to treat some cancers is leading more patients to learn they have Lynch and bringing more attention to the condition. Fitchburg-based Promega Corp. makes a kit for the testing, which detects a DNA abnormality known as microsatellite instability.
“Testing volumes are increasing as physicians are considering these new treatment options,” said Annette Burkhouse, senior medical science liaison at Promega. “We envision that will become an increasingly important part of Promega’s business.”
Challenging diagnosis
The diverse nature of Lynch syndrome — named for Dr. Henry Lynch, a cancer researcher at Creighton University in Omaha who died in 2019 — can make it hard for affected families and their doctors to identify.
Some relatives may get colon or endometrial cancer, which are typically not discussed publicly as much as breast or prostate cancer. Others may be diagnosed with stomach, ovarian or other cancers. Some of the cancers may appear at unusually young ages, but others can develop in later years when they might not seem abnormal.
Lynch involves a mutation in one of five genes, and some of the genes increase various cancer risks more than others. In general, people with Lynch face about a 10% to 60% chance of getting colon cancer, compared to 4% for the average person, and a 15% to 60% chance of getting endometrial cancer, compared to 3% for most women, according to the National Comprehensive Cancer Network.
Dampf knew about his mother’s and grandfather’s cancers but didn’t suspect a familial connection when he got colon cancer. After genetic testing confirmed he had a mutation in a Lynch gene called MSH2, he told his family.
Mike Dampf, with children Zoey and Cal and wife Heather at their home in Dodgeville, said he's glad he's able to take action to screen for and reduce the risk of cancers after learning he has Lynch syndrome, an inherited disorder that increases cancer risk. "You should know your risk so you can make informed decisions," he said.
Two of his three siblings have been tested, and are positive. An uncle and a cousin also tested positive. He doesn’t know if others have been tested. Dampf’s mother died from pancreatic cancer two years ago, and he thinks the cervical cancer she was diagnosed with earlier likely started as endometrial cancer.
Even though his genetic testing and his mother’s family history confirmed he inherited Lynch from her, she denied it and never got tested. “Emotionally, she just couldn’t bear the idea she gave it to me,” he said.
Genetic testing
He empathizes, worrying if he has passed the condition on to his son or daughter. As recommended by genetic counselors, the family is waiting until the children are adults to be tested if they want.
Cal Dampf turns 18 in February and vows to be tested on his birthday. “I want to get tested today,” he said. “Looking at the rest of my life, I want to know if I really need to worry about cancer or not.”
Zoey Dampf, 15, also wants to be tested but isn’t as eager. “I don’t think that much about it,” she said.
Zoey Dampf, 15, and Cal Dampf, 17, plan to be tested for Lynch syndrome after they turn 18. They each have a 50% chance of having acquired the condition from their father. People with Lynch can undergo screening tests, such as colonoscopies, earlier and more frequently than most people to help detect cancers.
The Genetic Information Nondiscrimination Act of 2008 prevents health insurance companies from discriminating against people based on genetic test results, but it doesn’t apply to life or disability insurance.
Mike Dampf, a wildlife supervisor for the state Department of Natural Resources, maintains a positive attitude as he lives with an increased risk for several cancers and only about three inches of his colon.
He must go to the bathroom frequently, usually including at least once overnight, and rarely has solid stools. Fresh fruits and vegetables pass through him quickly so he typically eats those at home and has more processed foods when out.
But sometimes he just eats what’s available and deals with the consequences, and he tries not to let Lynch define his life.
“I want to be able to sit down and share a meal with people,” he said. “Other than the six visits to the bathroom every day, sometimes it’s nice to live a day without thinking about those things.”
Cancer four times
Carrie Ketcham, 57, of Madison, has also learned to adapt to life with Lynch syndrome after four bouts with cancer.
The first came in 2009, when she was 44 and diagnosed with breast cancer. Her mother had breast cancer at age 64, but Ketcham didn’t think of a genetic connection. Raising two young children at the time, Ketcham had a mastectomy, chemotherapy, radiation and hormone therapy.
Carrie Ketcham with her mother, Barbara, in 2016, shortly before her mother died from stomach cancer.
Five years later, Ketcham developed colon cancer. Since it was her second cancer before age 50, doctors suggested genetic testing, which found she had Lynch. She had a third of her colon removed.
Her two sisters tested negative for her Lynch gene mutation, MLH1. Ketcham sent a letter to 11 cousins notifying them of their risk. Five cousins and four of their children have tested positive, and three cousins tested negative.
In 2017, the year after her mother died from stomach cancer, Ketcham was diagnosed with pancreatic cancer, which is often fatal. It was detected early, before she developed any symptoms, through a twice-yearly CT scan she continues to receive because of Lynch. Following surgery to remove a third of her pancreas, she has a good prognosis.
"Cancer diagnoses of any kind make you appreciate doing things now," said Carrie Ketcham, 57, who has Lynch syndrome and has had breast, colon and pancreatic cancer.
A mammogram detected cancer in her remaining breast two years ago, leading to another mastectomy. People with Lynch aren’t known to be at higher risk for breast cancer, but studies are looking at a possible connection, Weiss said.
Ketcham’s children, ages 21 and 17, have been tested for Lynch, but she declined to share their results. Shortly after her colon surgery in 2014, Ketcham had a hysterectomy, including the removal of her ovaries, to reduce her risk of related cancers.
“Knowledge is power,” she said. “That was huge, being able to feel like you have a little control over trying to protect yourself.”
She works full time in the complaint division of the state Department of Agriculture, Trade and Consumer Protection, and part time at Barnes & Noble. “I am doing well,” she said.
Spreading the word
Susan King’s Lynch syndrome diagnosis came in 2013, about a decade after she had a hysterectomy for endometrial cancer. One of her two sisters developed ovarian cancer and the other endometrial cancer, and all three learned they had Lynch. Their father died from colon cancer at age 74.
King
King, a retired attorney who lives in Madison, is now 74 herself and doesn’t have children. She’s not sure how many extended family members have been tested.
To reduce her cancer risk, King has colonoscopies at least once a year, has endoscopies to check for stomach cancer, stays out of the sun and tries to eat well. She wishes more people were aware of Lynch and brings up the topic when she can.
“It really becomes a matter of public responsibility to start speaking about these things,” she said.
From languishing to lovely, see 9 amazing Madison-area garden transformations
Pat Greathead's garden "before"
"One of the first gardens to be planted when we moved to our home 23 years ago was a 22-square-foot herb garden.
"Stepping and edging stones were found from farmers’ fields, and in a short time the garden took shape. There were many herbs, including mints, chives and bee balm, which over the years had spread quite literally over the entire site. These volunteers, along with weeds and other unwanted plants, made walking the path if not impossible, very dangerous.
"But there were also good harvests thanks to the abundance that Nature had provided. Chive flowers for chive vinegar, apple mint to dry for tea and potpourri, catnip and lovage were harvested in bundles.
"Spring of last year provided the time, due to the pandemic, and impetus (a planned-in-2019 garden tour by two of the local federated garden clubs) to perform an extensive redo. Much of the plant matter was removed, paths lifted, compost incorporated, a two-tier raised section built in the garden’s center, and new plants put in that had been overwhelmed with the exuberance of the volunteers. The entry was also moved from the southwest corner to the middle of that side to make entry safer and easier."
— Pat Greathead, East Bristol
Pat Greathead's herb garden "after"
Eileen and Eric Nemec's garden "before"
"Last year, July 2020, we had to have a large dead oak tree removed from the corner of our yard. The corner where it was removed looked violated and desolate -- so, we created something to fill the spot so that it was attractive to neighbors and to us from our screened-in porch."
— Eileen and Eric Nemec
Eileen and Eric Nemec's bicycle garden "after"
Scott Kramer's garden "before"
"At the start of the pandemic, my wife Lily and I embarked on transforming a patch of green grass into a prairie garden.
"We used a kick sod cutter to cut out the turf grass. We planted a native prairie mix from Prairie Moon Nursery in the spring of 2020. Establishing native plants takes time. Some plants needed to experience a winter before they would begin to grow.
"In the summer of 2021, we have begun to see the fruits of our labor. Native plants are beginning to establish and some have even began to bloom. In the coming years, we hope to see the prairie garden become more diverse."
— Scott Kramer
Scott Kramer's garden "after"
Alicia Szekeres' garden "before"
"We started landscaping our new home in the spring of 2018. Although a retaining wall was recommended, we opted to slope the back of our property and plant a native prairie.
"The heavy rain event of August 2018 prompted us to create a rain garden, also filled with native plants. This past year we spent a lot of extra time adding plants, removing invasive species and enjoying the bees, butterflies and birds. We start all of our plants from seed and do all of the work ourselves."
— Alicia Szekeres
Alicia Szekeres' garden "after"
Eileen and Dan Wilson's garden "before"
"For several years we planted vegetables in a few raised beds in our backyard. They were fine, but the space was not big enough and the rabbit fencing made them look rather disheveled.
"Last fall we decided to upgrade. At the end of the season, we took out the raised beds and instead created a 12-foot-by-12-foot fenced garden area. We designed it ourselves, loosely based on a style shown in a YouTube video we watched. First we set the poles in the ground, then built fencing sections to put between each post. We built it with the strongest possible rabbit-proofing because we have a lot of hungry rabbits in our neighborhood. The hardware cloth mesh fencing extends about a foot into the ground below each panel so nothing should get under it. We even put some under the stones below the gate!
"It’s a relatively small garden, so to use the space effectively, we built a V-shaped trellis for the cucumbers to climb. After all expenses, from screws, wood and post caps to the sand/rock mixture for setting the posts, the garden cost us about $600 plus a good amount of sweat equity. It would probably be more this year with lumber increases. We realize that we could buy a lot of fresh produce from the farmer's market for that expense, but for us it's about more than the food. We eat fresh veggies, preserve some of the produce, and just generally enjoy the entire process of planting, tending and harvesting."
— Eileen and Dan Wilson
Eileen and Dan Wilson's garden "after"
Sara Redford's garden "before"
"Last July, my family and I moved to a new home on Kendall Avenue in Madison. When we moved in there were two canopy trees in the front and a small patch of half-dead grass in the front yard.
"About a month in, the city informed us that both trees had to be removed and we were left with ground-down stumps that could not be replanted with new trees. The grass and basic Hosta in front started burning under the new, direct sunlight and looked pretty rough.
"In less than a year, we’ve replaced the grass with a perennial bed and the terrace space is now a raised bed garden and perennial/annual flower garden. Everything is still getting established, but for doing it all ourselves by hand, I’m pretty proud of it."
— Sara Redford
Sara Redford's garden "after"
Pam Holmes garden "before"
Pam Holmes knows you can give a small space big impact with the right plantings and accents. She turned the flowerbed at her Southwest Madison condo — that started in spring with a single lonely Hosta — into a display brimming with summer blossoms and a bright sense of welcome.
Pam Holmes' garden "after"
Diane Small with green tomoato
Diane Small holds a small green tomato that is a thing of beauty, just ready for slicing, dipping in batter and frying up for a delectable lunch.
But rather than eating that tomato from her own backyard garden herself, she plans to give it away — and is happy to offer the recipe, too.
During the COVID-19 pandemic, Small has turned her large, sunny backyard in the Waunona neighborhood into a community garden, where she and a legion of volunteers, many of them students from UW-Madison, till, plant, weed and harvest food for neighbors and nearby food pantries.
"I've already given away 40 bags of collards this year," said Small, who named her 40-by-40 foot space “Mamie’s Backyard Garden," in honor of her late mother, Mamie.
The two used to garden together in the yard after moving to Madison from South Carolina, where Small's youth was filled with backyard chores and home-cooked dinners fresh from the garden. But over the years, Small had moved on to other things, and the garden went quiet.
In 2020, friend and fellow gardener Jill Lundberg worked along with Small to secure a SEED Grant from the city of Madison, which provided $1,500 to cover a large part of the yard with organic soil and to plant collards, tomatoes, green beans, zucchini, squash and more for the neighborhood community. This year's projects have included increasing the number of plants and adding fencing to ward off ravenous neighborhood rabbits.
"Everything in this garden is free," said Small, who gives credit to the many volunteers and donors who have helped her, and who are acknowledged on her garden website, mamiesbackyardgarden.org. Small's church community from the S.S. Morris Community African Methodist Episcopal Church -- also beloved by her mother -- has been a huge support, too, she said.
"We've been praying over this food and talking over this food," said Small. "It's a lot of work, but it's going to feed a lot of people."
Diane Small's garden "before"
Diane Small stands in her backyard before it was transformed into a vegetable garden to help feed the community.
Diane Small's garden "after"
Victoria Johnson's "before" garden
During the COVID-19 pandemic, Victoria Johnson tired of seeing this pool equipment box in her backyard — so she covered it with a thriving flower garden.
Victoria Johnson's garden "after"
