A Personal Story of Young Onset Colorectal Cancer
What comes to your mind when you think of a Colon Cancer patient? For me, I pictured someone older, perhaps with harmful lifestyle habits. I never once pictured someone like my brother-in-law, a young, bright, world traveler, would be diagnosed with colon cancer.
In early 2019, my brother-in-law, Dave, was having GI issues and had been seeing a series of doctors. All of whom were unconcerned, but could not determine his ailment. In May, one of his doctors had referred him to get a colonoscopy. Dave described going in for this colonoscopy, I’m sure like many have gone in before, routinely, sort of unconcerned, with the doctors around him mirroring his emotions. When he awoke, they came back with the results with an urgent and panicked look. They’d found a tumor, and they weren’t sure if it was malignant or benign. It turned out to be malignant, and he was diagnosed with Stage IIIC colon cancer (later confirmed to have been stage IV). He was only 26 years old.
Throughout the course of his treatment, doctors continued to maintain the “unprecedented” nature of such a young patient with an advanced stage of colon cancer. Like me, many still held the perception that this was an ‘old person’s’ cancer, and if you were diagnosed when you were younger, it was due to having a very unhealthy lifestyle. Not only was Dave young and healthy at the time of diagnosis, we later learned that it takes approximately 10 years for colon cancer to reach stage IV, meaning he could have very well had the beginnings of colon cancer as young as 16 years old.
Being a graduate student at the time, Dave decided to dive headfirst into the research about Colon Cancer, and more specifically – how it affected young people. Here are some of the facts:
- Currently in the United States, about 20,000 patients between ages 15-39 are diagnosed with CRC each year; ~4,000 of them will die
- By 2030, 10% of all colon cancers and 22% of rectal cancers will occur in young patients
- With early detection, CRC has a 90% survival rate, but early detection is near impossible for younger patients
- Traditional colon cancer treatments are not as effective on younger patients
In a Caring Bridge post, Dave once wrote about the issue: “Here’s the current state of things: each year colonoscopies are protecting older patients from the devastating effects of CRC; consequentially, in the aggregate, it looks like we are “winning the fight” against this cancer. But meanwhile, more and more young people are showing up in their doctors’ office with symptoms–like blood in the stool–asking what is going on. Doctors aren’t generally trained to think “colon cancer” when they see a young patient with a bloody stool so it usually takes a while for the young patient to get scheduled for a colonoscopy. Even if the colonoscopy was quickly scheduled, though, it might not be a huge help because by the time you are symptomatic, the cancer is usually at an advanced stage. This is basically my story, and it is very similar to other young patients I’ve met over these past two years”.
Increasingly, he was realizing that his story was unfortunately, not as unique as he and his doctors had once thought. After doing some of this extensive research and meeting other patients, Dave connected with two other young patients to establish an organization, called CRC Change, with the purpose of finding a cure for young-onset colon cancer. The two other founders of this organization had also battled colon cancer diagnoses since they were in their 20’s. They knew they needed to band together, because the clock is ticking for so many like them.
In May of 2021, just four months after establishing CRC Change, Dave passed away due to his cancer. The effects of his passing continue to ripple, as so many who knew him, understand very deeply the need to take action on this issue.
The reality is, colon cancer has historically disproportionately affected certain demographics such as black, and elderly communities. It may seem obvious to some, but when it comes to research, more funding equals more life-saving treatments. When it comes to well-funded therapeutic areas such as breast cancer, a patient who is diagnosed at Stage III has over 6 broad treatment options, such as chemotherapy, immunology, etc., with many individual drug options within those categories. With a Stage III colon cancer diagnosis, there are only 1 or 2 typical treatment plans, with far fewer drugs available. Getting funding for these studies is one issue, but another is participation. In some disadvantaged communities that this disease affects, there are large barriers to participation – some being inclusion and exclusion criteria, and others being more centered on financial and logistical concerns.
One of the co-founders of CRC Change, Hunt Vandertoll, recently joined me to tell his and Dave’s stories for Greenphire colleagues. Hunt is currently in remission and has been for several years. He works on Capitol Hill and is actively fighting to change the perception, legislation, and funding around colon cancer. Although the FDA has lowered the eligibility for screening via colonoscopy from 50 to 45, it is simply not enough.
However, through the work of young patients like Hunt, I believe we will be able to change the conversation around colon cancer. Dave fought for better funding, more awareness, better screening, and more treatment options. That work continues through his organization, and I look forward to the day to see his vision realized.
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