Lynch Syndrome, colon cancer, but still alive and kicking
State: New Jersey
Congressional District: NJ05
Cancer, Genetic Disease
Issues and Challenges
Robin has encountered: Access to Expert Providers, Access to Medicine, Caregiving
This is our family story. It was 1997, and my husband Dave was 29-years old. We had recently married, we were college sweethearts, was part of selling the family business, bought our first house, and we just had our first child….you know, stressful. Dave was still playing soccer. So, when he started having symptoms of colon cancer – cramping, bleeding, etc., he listened to his primary physician when he said it was hemorrhoids. The Internet barely existed, and genetics wasn’t much of a topic. “Family History of Colon Cancer” was right there on his chart, however. His grandfather had colon cancer. His father had colon cancer.
After six months of pestering him, and therefore him pestering his physician that the symptoms hadn’t gone away, he was finally referred to a Gastroenterologist, and as you can guess, colon cancer. At 29, he had surgery to remove a stage 3b tumor. Back then, there was no laparoscopy or robotic surgery, so the scar was sizable, and it took quite a while to recover. He went from being the proverbial Superman to someone who couldn’t lift his 15-month-old son. Because it had spread to a few lymph nodes, he had six months of chemotherapy after. His routine was work Monday-Thursday, chemo on Friday, rest Saturday, and soccer on Sunday. His mates on the pitch had no sympathy for my game. When you’re on the pitch, you either play or you don’t. He played. He was lucky in that he had the ability to take time off, not only for a few weeks after the surgery, but also for the additional Fridays when he had chemo.
After chemo, he was considered clear, and the “right of passage” that was being a Dubin male continued. His grandfather had lived well into his eighties after having colon cancer in his sixties. His father is still alive (and kickn) after he had colon cancer in his forties, so he had no concept of having any other outcome besides a positive one.
In 2007, he was now turning 40, and the colon cancer from ten years’ previous, is practically a bad dream. We have three boys, a full schedule including Dave playing and coaching soccer. He is still having annual colonoscopies which have all been clear. He goes to donate blood at Community Blood Services, as he had been since he was considered cancer-free for five years, and his iron count had dropped. he schedules a colonoscopy on short notice, and we discover a new primary colon cancer tumor. Since it had been barely a year since his previous clear colonoscopy, it created more of a concern than ever before. We scheduled his surgery for just after Memorial Day, and then proceed to schedule his first annual Dave’s Not Dead Yet party. We close off the street and a few hundred of our closest friends join us and our family in his last meal before having another surgery.
After another successful surgery, we met with a genetic counselor, and we had genetic testing done to see if he had something called Lynch Syndrome. Several weeks after sending his blood out, the results came back that he was positive for MLH1, a gene mutation that he inherited from his father, just as he had inherited it from his father. Having the gene mutation also had other implications besides colon cancer. My genetic counselor discussed what being positive meant, and that it could have implications for bladder, kidney, liver, even lung and breast cancer. He started seeing a high-risk oncologist. She mapped out his plan – quarterly tests consisting of CT scans, cystoscopy, mammogram, and of course colonoscopy/endoscopy (he calls them his quarterly annuals). All the tests came up clear, but the CT scans discovered a small tumor on his right kidney. He meets with a Urological surgeon, and he removed 10 percent of his right kidney, and the small renal carcinoma. The good news is that because it was caught so early, no further treatment was necessary.
The ten-year anniversary of the Dave’s Not Dead Yet party has come and gone. He still gets his quarterly annuals. Aside from a few bleeding ulcers, and arthritis in his knees from forty-plus years of soccer, he has few issues. Our biggest concern is the next generation. Our oldest tested positive for the gene mutation, and so far, his first 6 colonoscopies have been clear, but he is facing a lifetime of extensive screenings. Our middle son is 21 and he tested negative, so theoretically he’s normal. We still have the 17-year-old who will get genetic testing when he turns 18. It’s always been about the story, not about Dave. In our world, we see entire families affected by Lynch Syndrome. We hope by sharing, the outcomes for others, including our family, will be better.
In 2012, we started AliveAndKickn, a foundation to improve the lives of individuals and families affected by Lynch Syndrome. The name came from Dave’s story of his love for soccer, regardless of the surgeries and the tumors. In 2016 we launched Then HEROIC Registry, a patient-centric genetic registry, with the goal of allowing patients to share their data, but to also allow for the aggregation of data to conduct research. The statistics indicate that Lynch Syndrome could affect as many as 1 in 279 Americans, with 95% being unaware.
My Motivation and Inspiration
How hereditary cancer impact our whole family including our children.