Just over two years ago, when I was 28, I was diagnosed with stage 4 colon cancer. To say I knew nothing about cancer at that point in my life would be a gross understatement. In fact, finding out there was no stage 5 was a huge shock all on its own! How could I, an otherwise healthy 28 year old man who who exercised and ate well have end stage cancer? The answer to that came in the form of a simple blood draw. Along with my cancer diagnoses, I was also told I had a genetic condition called Lynch Syndrome. Lynch syndrome meant that I had some messed up genes that had no way to repair themselves. Because of this, I was a ticking time bomb just waiting to get cancer. In general, lynch syndrome takes away the fear of “I wonder if I will ever get cancer?” And replaces it with the fear of “WHEN will I get cancer?” The answer to that, for me, was apparently at the age of 28!
So there I was, young and in serious danger of dying quickly. I was rushed into emergency surgery to remove a large part of my colon along with the primary tumor. During the surgery, it was confirmed that the tumor not only broke through the colon wall, but had spread to my mesentery…an unlikely and dangerous place to spread. My prognosis was so grim, my surgeon out a letter on my door instructing nurses and visitors NOT to discuss my diagnoses with me.
After I recovered from my surgery, I went through six months of aggressive chemo. At the end of those six months my mesenteric tumor shrank enough to make me a candidate for something called a NanoKnife procedure. NanoKnife was explained to me as a fairly new procedure used only when tumor’s are in highly sensitive and dangerous areas. Rods would be inserted into my tumor and electromagnetic waves would be pumped through the rods. This would cause microscopic holes in the tumor’s cell, causing them to leak out all their contents, thus killing the tumor and giving me approximately 2 years of being cancer free. I understood this was not a cure, it was merely a way of treading water until another plan could be formed. I signed off on NanoKnife and my unconventional fight with cancer truly started.
The NanoKnife procedure quickly turned complicated. Once inside of me, my surgeon realized the tumor attached itself t my small intestine and gallbladder. What was supposed to be a frying of the tumor, quickly turned into something much more. I underwent a gallbladder removal, a small intestine and mesenteric resection, a stomach bypass, and an intestinal rerouting. I was told everything went beautifully and I should be cancer free. I was sent home to recovery in peace after about a week in the hospital.
Now, anyone who knows me well, knows that when I do something, I go all out. So, not only did a NOT recover peacefully, instead I started to bleed internally. An ambulance had to be called to my home in a horrible blizzard where they found me, pale, weak, and with barely a pulse. I was rushed to a local hospital where I received 8 blood transfusions in an effort to stabilize me. This resulted in a week long stay in ICU where I suffered from seizures due to a lack of blood. At this point, I was more than sure I would never leave the hospital alive.
Somehow, I made it out. I was supposed to start maintenance chemo once I was strong enough…but my quick brush with death made me reconsider everything I was being edged to know more about what was happening to me. I was so tired of not knowing anything about my cancer other than what my oncologist was briefly telling me. So I read. I read a lot. It is so important for those of us with cancer to not be afraid of information. The more we know, the more we can have an informed discussion with our team of doctors. I truly believe that the more we know about our cancer, the more doors open for us.
Self advocacy will get you far in the cancer world, through my research, I found that the maintenance chemo my oncologist wanted me on was not beneficial to those of us with lynch syndrome. In fact, the drug had been noted as detrimental in some cases. Shouldn’t my oncologist have known this? Probably. But she was my ONE oncologist…I was one of possible HUNDREDS of patients to her. How could I expect her to know all the nuances of colon cancer when she treats every cancer, every day? I knew at that moment I needed an oncologist who not only specialized in colon cancer, but lynch syndrome as well. I was o angry that my oncologist didn’t have the knowledge I thought she should have…but now I realized she was doing her best and I couldn’t rely on ANY doctor to have ALL the answers. Doctors are wonderful people, but I had to remember that they are still human. Humans with immense pressure placed on them on a day to day basis. It was then that I made the decision to learn as much as I could about lynch syndrome and MY colon cancer. I wanted to bring more to the table during appointments, I wanted to ask questions and learn, I wanted to save my own life.
My research led me to the university of Colorado, where my current oncologist, Dr. Wells Messersmith works. I met him after my NanoKnife procedure and filled him in on what was happening with me. At this point, two months after NanoKnife, I was assumed cancer free. Unfortunately, one morning, I woke up to a familiar and excruciating pain where the tumor was. A quick CT scan confirmed what I already knew: NanoKnife, my unconventional answer to the cancer trying to kill me…the procedure that was being hailed as an incredible weapon against cancer…the surgery that almost took my life…was a total and utter failure. That tumor was pissed and growing.
Little did I know that this was possibly the biggest blessing I could have asked for. Because the tumor was alive, well, and measurable, Dr. Messersmith suggest I quickly enter a phase one clinical trial with something called “immunotherapy.” A very quick google search unearthed a massive amount of articles calling immunotherapy the biggest medical breakthrough since antibiotics. I wanted in.
Once I started the immunotherapy trial, I knew something strange and good was happening inside my body. The drug, Atezolizumab, was incredibly easy to tolerate and within weeks…WEEKS…I felt well. My pain and fatigue were replaced with strength and hope. I went from a tiny 110 pounds to 130 pounds in roughly a month and a half. Whatever was happening on my inside was manifesting itself on the outside. The drug removed the blinders on my immune system that cancer had placed on it and my cancer was the number one target. And now, a year later, here I stand: healthy, alive, active, and well. My tumor is still shrinking and I live my life with cancer as an after thought.
Had I not done my own research…had I not had the courage to seek out another oncologist…I would most certainly not be alive today. So I encourage all of those with cancer to truly take the reigns and be your own life saver. Don’t wait until it’s too late to start looking at trials…please….look NOW. Save the trial number, print off the trial description, and take that information to your oncologist. Do not wait for the to present something to you….they are so busy that things fall through the cracks all the time. During these last two years I have noticed that those who do the best and live the longest tend to be those who are well informed and active in their treatment planning.
I often tell newly diagnosed patients that they are the coach of their cancer care team. Your oncologist is the quarterback, but it is up to YOU to run the team. So you have to step up and play your own role in order to win this game. You will hear a lot of “no’s” as you present information to your team…but for every 20 “no’s” there will be at least one “yes.” And sometimes, all you need is that ONE YES.