Colorectal Cancer Diagnosis
The world must know that cancer patients are warriors and that cancer can be fought and won too. I am Scott Wilson, 52 years old, and I was born in Glasgow, Scotland, where I lived for the first 30 years of my life. Since 2105, I have lived in Colorado, USA, with my wife Jaione and children Andrew (18) and Alba (15). As of August 2020, I have been cancer-free for three years. I was introduced to cancer relatively early in my life. I was in my mid-20s when my mother was diagnosed with colon cancer, and she passed away at 59 years of age. This was a clear warning sign that I was at high risk of developing colorectal cancer myself. So, at 46 years of age, I decided to undergo a fecal immuno-oncological test to determine whether I had any early indications. But according to the rules in the UK, at the time, you were required to have at least two deceased relatives to undergo a colonoscopy early, before the age of 55, and unfortunately, I did not qualify. In hindsight, I should have been considered a high-risk patient because of my family history. Three years later, at 48 years of age, I found blood in my stool when I had already moved to the US. This was a clear symptom, and I immediately underwent a colonoscopy and was diagnosed with stage 4 colorectal cancer.
When I heard the news, I thought my life had stopped. You’re under anesthesia during the test, and when you wake up, the first thing your doctor tells you, without preamble, is that you have a mass in your colon that needs surgery. I remember going cold and pale. When we went to the oncologist to check the pathology of the mass, I was terrified. But Jaione held my hand, and it was she that had the bravery to ask the oncologist if there was a treatment plan available. At that time, I did not look for long-term solutions. All I sought was an affirmation that, yes, you could be treated, and there is still hope. Several discussions were held whether my medical team should first remove the mass in my colon by surgery or the mass in my liver with chemotherapy. Eventually, it was decided that I should undergo a colon resection followed by 40 weeks of chemotherapy through a port in my chest. I was given three chemotherapy drugs as my medication – fluorouracil, leucovorin – oxaliplatin, and an immunotherapy drug, panitumumab.
A tough battle
Of course, chemotherapy was tough. Despite the toll on body and mind, I did everything to make the process a part of normal life, not take over our lives. I wanted Andrew and Alba, then 14 and 10, respectively, to see a normal father. I wanted my colleagues to continue to see me in normal light. One of the drugs I was prescribed, namely panitumumab, creates severe photosensitivity. As a result, I could not go out in the sun. As a lover of photography, I thought I would have to give it up. When you’re diagnosed with cancer, photography is not the first thing on your mind. But this passion of mine is my creative outlet. It was the best way that I could express myself and manage my state. So I began to photograph wildlife from inside my car to avoid sunlight, and this is how my book ‘Through the Window’ was born. In this book, I share my journey to becoming cancer-free through the lens of wildlife photography. I would always take confidence from my 3-month scan reports, and this improvement gave me the courage to begin writing a recovery story while I was still going through treatment. The original concept was to create a fund-raiser to support colorectal cancer research, but I soon realized the real purpose of the book was opening up a difficult conversation about cancer – how I first found out about my cancer, how I got tested, and how I am coping with it – and talking to other people going through a similar journey.
I remember my mother getting her chemotherapy 25 years ago, and I compare that to my own experience. My mother had to stay in the hospital during her treatment, but in my case, the therapy was a 3-day process every week, most of which was outside of the hospital. I would receive a 6-hour infusion on day one and then return home with a small pouch which continued to administer the medication. Really, that small bag was the only clue of the lack of normalcy in our lives. Otherwise, I lived my ordinary mobile routine of life and work. Importantly for me, my children didn’t see a victim of cancer, but their father fighting a disease with normalcy.
I remember speaking to a researcher two years ago, while I was perhaps a little confused about continuing to receive treatment during remission while others I knew in the same position had stopped. She told me that my journey from stage 4 cancer to becoming cancer-free was fantastic, but when it is a cancer of such an advanced stage, you should never turn your back on it. And that is how I reconciled receiving remission immunotherapy every three weeks simply as part of my normal ongoing life, and I am grateful for it.
I’ve learned that a patient from a high-risk family must have a different prevention and treatment protocol if it comes to that. I credit my mother partly for my recovery journey. She was one of the millions of people who had cancer at that time that willingly submitted to research, and it is patients like her who have contributed to innovations that have allowed me to receive an advanced treatment today.
What gave me the strength to continue with my treatment was the never-ending support from family and the improvement in my scans that gave me the hope that I could return to everyday life. I set only small goals for myself. I never asked if I would be okay three years from now. I never demanded answers. I took things one day at a time, with baby steps.
This disease has not impacted my lifestyle very drastically. I still work, our children still go to the same school, we still run in the same circles. I still attended all of my children’s sporting events, even if I had to put on a mask and SPF-70 sunscreen to deal with photosensitivity. Although I would be tired, the drive to feel normal compensated for my energy loss.
What has changed, though, is that I have now become a conscious advocate. I helped develop a bill in my home state of Colorado to reduce the colorectal cancer screening age from 50 to 45, as incidence in the 40-50 age group is on the rise, with a very high proportion of late-stage disease, like my own. Diagnosis of colorectal cancer at stage 1 has a 90% survival rate and at stage 4, only 14%. Early screening interventions are critical to protecting those at risk from cancer. It is crucial to spread awareness among people about the importance of listening to your body.
During my treatment, I faced several physical obstacles. Owing to the chemotherapy, my hair got thinner, my face and torso would redden because of my photosensitivity. I also developed neuropathy on my hands and legs. My family and I recently climbed a 14000 ft. mountain, and when I reached the summit, I teared up. I had not expected to go mountain-climbing with the constant discomfort in my feet, and it was a wonderful milestone to achieve with family and friends around me.
If you cannot embrace your fear of cancer, you cannot push through and get past it. Pretending that it is a walk in the park will not help you. When I was first diagnosed with cancer, I wrote an open letter to my colleagues explaining my situation. Appealing to the community provides support. It makes you feel that you are not alone. Cancer is not perceived or defined as it was when my mother was diagnosed. Treating cancer as a chronic disease has to be a long term goal if it is ever to become a part of the normal culture.
Throughout my journey, my wife and children have been my biggest support, both practically and emotionally. My wife lost her father to lung cancer, and I lost my mother too. Despite such a dark family background, she’s very positive. When I was first diagnosed, I was in complete shock. But she took notes and asked questions to the doctor. My professional caregivers at the hospital have now become my family too.
Fighting it out together
An important life lesson that I learned from my experience is the generosity of cancer patients. I was lucky – I received a fantastic treatment, with my family to support me. But I understand it isn’t the same for everyone. I remember several people approaching me on Facebook and calling for help and guidance. I’m a part of a community of people – The Colon Club – who’ve been diagnosed with colorectal cancer at a young age, and I’ve made friends for life there. It makes you realize that you’re never alone. You’ve got a whole community backing you up.
I would like to say that when you hear the word cancer, do not think it’s ‘game over.’ Your success lies in making progress. Do not ignore your symptoms, and do not delay getting tested. A cancer diagnosis is infinitely more destructive than a colonoscopy will ever be to your body or mind. Do not allow the stigma that cancer brings with it to put your life at risk. Your health is far more important than what you might imagine other people’s opinions are. Act early, be confident, and embrace your family, friends, and community’s support and love. Remember, you’re not alone. We’ve all got your back.