A patient advocate for cancer research
This is the first part of a guest blog post written by Dave Dubin. Read the second part here.
1997 seems so far away. I’m 29, still a strapping 200 plus pounds, playing soccer, managing the business, recently married with first house and first son. As much as “family history of colon cancer” is written all over the chart, I’m sent away by my primary physician when I have symptoms. A few months later, symptoms of blood in the stool and cramping don’t go away. A gastroenterologist finally confirms stage three colon cancer. I have what will become the first of several surgeries at Mt Sinai Hospital in Manhattan, and the start of what would become much more than a patient-doctor relationship with Gastroenterologist Blair Lewis and Brian Katz, my surgeon.
Three years after my surgery, my older brother develops colon cancer. Since he started getting screened by Blair Lewis after my episode, his is caught earlier. Brian Katz is his surgeon as well, and since laparoscopic surgery is now more prevalent at Mt Sinai, his is less invasive and scars are smaller. No chemo. I notice how my parents have a difficult time watching their son go through this. So my grandfather has colon cancer in his sixties, my father has colon cancer in his forties, my brother in his thirties, and me in my twenties, yet no one is talking genetics. My follow-up treatment regimen is an annual colonoscopy, and they are all clear. Same for my brother.Three years post-surgery, we have our second son.
Five years post-surgery and considered in remission, I’m allowed to become a blood donor once again. Seven years post-surgery, we have our third son.
Just before my fortieth birthday, about a year since my last colonoscopy, I go to Community Blood Services of Paramus to donate, and my iron count had dropped. It had dropped so significantly that they were joking about giving me a transfusion. I schedule another colonoscopy with Blair, and we discover colon cancer had returned.
It’s 2007 now, and I have genetic testing finally, and something called Lynch Syndrome is diagnosed. Dr. Henry Lynch at MD Anderson Hospital in Houston discovered a hereditary gene mutation that if positive, means a 80% chance of colon cancer in your lifetime. In my case, it had not missed a Dubin male in three generations. There is a 50/50 chance of passing on the mutation to your children. My aunt on my father’s side however does not have the gene mutation, and therefore, her line has had no issues. At the time of my second colon cancer and subsequent genetic diagnosis, I have three sons age twelve, eight, and four. I start seeing an oncologist. My high-risk oncologist explains to me that Lynch Syndrome, HNPCC, can have ramifications for colon cancer, plus cancers of the kidney, bladder, pancreas, stomach and breast cancer in men. And in women, Lynch can have significant ramifications for endometrial and ovarian cancers also. I begin what I call my “quarterly annuals.” Every three months, I have a different test – colonoscopy and endoscopy, cystoscopy, mammogram, and CT’s of chest/abdomen/pelvis. My oncologist won’t look at my brain as she says there’s nothing there. Because of my Lynch diagnosis, and subsequent testing over and above a colonoscopy, a small renal carcinoma is discovered on my right kidney. Michael Palese becomes my kidney doctor at Mt Sinai, and along with Dr. Katz, laparoscopic surgery is performed in early 2009. Dr. Katz jokes that the third surgery was free, but the next one will not be. Only 10% of the kidney is removed, and there have been no complications.
After my second tumor in 2007, I became more active in the advocacy world. As an educated patient, I felt that I should have been more aware of the statistics. I had no idea that about 150,000 new cases of colon cancer were being diagnosed each year, and that about 50,000 people die from colon cancer each year. I didn’t know the statistics of women getting colon cancer, especially compared to breast cancer. No one talked about colon cancer, even though it was one of the few preventable cancers or at least treatable if found early, which meant regular screening. In other words, if I “didn’t get the memo,” what about others? So I started writing the blog AliveAndKickn. Colon cancer, especially genetic colon cancer Lynch Syndrome, was missing the celebrity survivor. My wife and I created AliveAndKickn. If our cancer needed a celebrity survivor, I would make my own. I look ok enough, I’m still active, and from a longevity standpoint, I should have a few more years above ground. My grandfather lived into his eighties, ultimately dying of Alzheimers. My father is still alive today at eighty-three. My older brother is still alive at fifty-three. So if my story is compelling, and with my voice and storytelling capabilities, who better to champion this cause?
This is just the first half of Dave Dubin’s story. You can find the second part of his post here.