Faces Of Blue: David Dubin

While I may be older now, my story goes back to twenty years ago.  It was 1997 and I was a (I like to think) strapping 29-year old. I had recently married my college sweetheart, was part of selling the family business, bought my first house, and we just had our first child….you know, stressful. I was still playing soccer. So when I started having symptoms of colon cancer – cramping , bleeding, etc., I actually listened to my (then) 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, however, right there on my chart.  My grandfather had colon cancer and my father.

After six months of my wife pestering me and, therefore, me pestering my physician that the symptoms hadn’t gone away, I was finally referred to a gastroenterologist. It was confirmed I had colon cancer.  At 29, I had surgery to remove a stage IIIb tumor.  Back then there was no laparoscopy or robotic surgery, so the scar was pretty sizable and it took quite a while to recover.  I went from being the proverbial superman to someone who couldn’t lift my 15-month-old son.  It had spread to a few lymph nodes, which meant I had six months of chemotherapy after. My routine was work Monday-Thursday, chemo on Friday, rest Saturday, and soccer on Sunday. My mates on the pitch had no sympathy for my game. When you’re on the pitch, you either play or you don’t. I played. I was lucky in that I had the ability to take time off not only for a few weeks after the surgery, but also for the additional Fridays when I had chemo.

After chemo, I was considered clear, and the “right of passage” that was being a Dubin male continued.  My grandfather had lived well into his eighties after having colon cancer in his sixties.  My father is still alive (and kicking) after he had colon cancer in his forties, so I had no concept of having any other outcome besides a positive one.

In 2007, I’m now turning 40, and the colon cancer from ten years’ previous, is practically a bad dream. I have three boys and a full schedule, including playing and coaching soccer. I’m still having annual colonoscopies which have all been clear.  I go to donate blood at Community Blood Services, as I had been since I was considered cancer-free for five years, but my iron count had dropped.  I schedule a colonoscopy on short notice and we discover a new primary colon cancer tumor.   Since it had been barely a year since my previous clear colonoscopy it created more of a concern than ever before.  I scheduled my surgery for just after Memorial Day and then proceeded to schedule my first annual Dave’s Not Dead Yet party.  We close off the street and a few hundred of my closest friends join me and my family in my last meal before having another surgery.

After another successful surgery, I met with a genetic counselor. We had genetic testing done to see if I had something called Lynch Syndrome. Several weeks after sending my blood out the results came back that I was positive for MLH1, a gene mutation that I inherited from my 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. It could have implications for bladder, kidney, liver, lung, and breast cancer.  I started seeing a high-risk oncologist. She mapped out my plan – quarterly tests consisting of CT scans, cystoscopy, mammogram, and of course colonoscopy/endoscopy (I call them my quarterly annuals.)  All of the tests came up clear, but the CT scans discovered a small tumor on my right kidney. I met with a urological surgeon. He removed ten percent of my right kidney and the small renal carcinoma. The good news is that because it was caught so early no further treatment was necessary.

I’m coming up on my ten year anniversary of the Dave’s Not Dead Yet party.  I still get my quarterly annuals. Aside from a few bleeding ulcers and arthritis in my knees, from forty plus years of soccer, I have few issues. My biggest concern is the next generation. My oldest child tested positive for the gene mutation and his first three colonoscopies have been clear. Although, he is facing a lifetime of my type of screening. We have a 17-year-old and a 13-year-old. If they’ve inherited Lynch Syndrome, they will face similar challenges.

In 2012, my wife Robin and I started AliveAndKickn, a foundation to improve the lives of individuals and families affected by Lynch syndrome.  The name came from my story of my love for soccer, regardless of the surgeries and the tumors. In 2016 we launched HEROIC Registry, a patient-centric genetic registry, with the goal of allowing patients to share their data and allow for the aggregation of data to conduct research. There are statistics being published indicating that Lynch syndrome could affect as many as 1 in 300 Americans, with 95% being unaware.

I’ll never forget the look on my father’s face as I was being wheeled into the OR back in 1997. He watched his 29-year-old son go through what he and his father  went through. My father is still AliveAndKickn at 84. I’m turning 50 this year. I joke that it’s theoretically time for my first colonoscopy. I think I’ve had 25.  #IAmAliveAndKickn.

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