My name is Tom, and I'm a metastatic colon cancer survivor.
I was having some abdominal pain back in 2012, and it was during a routine physical that my doctor said, “let’s get that checked out.” In a couple of days, I was having a CT scan, and the next day I was in front of a surgeon.
My surgeon said, “that’s coming out, and it’s coming out now. I had a colonoscopy the next morning (my first) and a couple days after that, I had a partial colectomy and he spent the next eight days in the hospital. Initially, I thought it was just a situation where the removal was going to be the final process. But when the surgeon mentioned that I was going to be doing some chemotherapy, then I knew things were a little more severe than I thought. At the very first meeting with my oncologist, before any chemo treatment would begin, he told me I needed to get genetic testing. He said he “highly suggested” I do that. The testing was not covered by my insurance, and it would cost me about $600. I actually thought about it a couple of days. I didn’t know how to fight cancer, but I wanted to give my doctors all the tools they wanted, so I got the genetic testing. It would take over 2 years to realize the genetic testing and knowing my biomarker would be the most important thing I would do during my 4 ½ year fight.
When I first got the biomarker testing, I didn't know what it was going to lead to. My biomarkers said I was MSI-H / dMMR. I had Lynch Syndrome which is a hereditary condition. This led Ambry Genetics to want to test everyone on my father’s side of the family and they did. I went over two years of chemo regimens and radiation, and the tumor would always start growing after those treatments stopped. This was not working. I did get a 2nd and 3rd opinion about treatment paths and found I was on the best path I could be on. But this path was not working.
It was at this time I received a call from one the cancer research centers near me. They said they may have a clinical trial that may be beneficial. The clinical trial involved an immunotherapy drug that at the time was approved for certain lung and melanoma cancers. I had metastatic colon cancer. I was very skeptical, but what was on the table was not working, so I decided to try the clinical trial. After only one treatment, we found the tumor shrank more than any of the other therapies had accomplished. I found out they were looking for more people like me that were MSI-H. That was when I realized that the genetic testing I did over two years ago as a “suggestion” was why I got into the clinical trial. The clinical trial was the game changer. The clinical trial gave me the chance I was looking for. I was in the clinical trial for over 2 years. Currently, I am 5 years NED (No Evidence of Disease) and 10 years from diagnosis.
The CT scans are showing now that it's not even on the radar. There is nothing to measure. When I came off of the treatments in 2017, I was able to get back to bike riding, running and doing whatever I was doing prior to that.
I put a face on cancer. I would talk to it. I've always looked at cancer as being like an opponent that has to be defeated. It’s an opponent that enters your life and you have to deal with it. You can’t say you don’t want to play. You have to play. You have no choice. I did not know how to fight cancer. I had to leave that up to my doctors. You need to know what's the plan to get rid of this? And that's the plan you're on. You're not in control now, so you're pretty much along for the ride. But you need to be the best patient you can be. I had to be in control of something. I found that trying to control some aspects of your cancer fight can be extremely beneficial to your mental health and control of anxiety. Cancer was trying to stop me from cycling. Cycling was always something I would take back. You will have to give ground to cancer, but always have a plan to take it back. There were times when the pain would be so intense and keep me from sleeping. A lot of times I would go for a walk when I couldn’t sleep. Cancer may own the pain, but I own the walk. That’s what I was in control of. Just having it as an opponent that you need to defeat is good for the cancer patient. It allows you to be more on offense than on defense, if you can.
So, to know your biomarker is absolutely huge. In these days of targeted therapies and precision medicine, knowing your biomarker is extremely important. Targeted therapies target specific biomarkers. You need to know yours. You need to become a target. Biomarkers are the ‘person’ in Personalized Medicine. The importance of it cannot be overstated. So absolutely, know your biomarker.
