Rare Community Profiles

Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

How Derrick’s Colorectal Cancer Journey Led Him to Advocate for Increased Biomarker Testing

Sometimes, it can be difficult to start conversations around colorectal cancer. Though there shouldn’t be, there is often a stigma associated with this particular cancer; people may feel awkward or uncomfortable discussing symptoms or even just addressing the particular body parts affected. But given the increasing number of colorectal cancer cases in the United States, and the racial and ethnic disparities that still exist in colorectal cancer diagnosis and care, holding these discussions isn’t just important—it’s absolutely necessary.

Derrick, now 57 years old, began his colorectal cancer journey ten years ago in 2013-14. After noticing blood in his stool, he was (understandably) concerned. A visit to the doctor discovered a polyp, the tip of which was cancerous. But doctors chose to monitor rather than treat. Every six months, Derrick would return to the doctor for a checkup; there were no signs of additional growth.

Then, in 2016, Derrick’s condition changed. After a struggle to find treatment—and a few frightening statements from his medical team—Derrick chose to undergo biomarker testing. Ultimately, this allowed for his inclusion in a clinical trial where targeted treatment has not only improved his health but helped him to find hope.

Now, Derrick is a fierce advocate for biomarker testing and hopes to spread awareness so that others can find the help that they need.

Derrick’s Journey

In 2016, Derrick found it increasingly difficult to pass any bowel movements. He began searching online; according to WebMD, he says, it sounded like he just had hemorrhoids. But given his history, he decided to make an appointment with his doctor. Just in case, he thought.

Unfortunately, his body was harboring something slightly more sinister than hemorrhoids. An examination showed that Derrick had a tumor growing just outside of his colon. It wasn’t until it began pressing on the colon that the changes in bowel habits occurred. Derrick hadn’t experienced pain or any other noticeable symptoms.

Then came the battery of tests: CT scans, PET scans, all sorts of bloodwork. Through these, doctors discovered that the cancer had metastasized (spread) to lymph nodes in the upper body cavity. Derrick visited several surgeons, but they all said the same thing: the cancer had spread to places that they couldn’t reach. Derrick not only had colorectal cancer, but his cancer was inoperable and terminal. He shares:

“The doctors told me that I had about 18 months to live. I was devastated. I’ve been married to the same woman for 33 years and we have two grown children, and all I could think was that it was all coming to an end. I didn’t want to lose them or my life. Suddenly, I was faced with how to tell them. How they would take the news. All I could think about was how I could fight this cancer because this could not be the end for me.”

What is Colorectal Cancer?

Sometimes referred to as colon cancer, colorectal cancer begins in the colon or rectum. It often begins as small or benign polyps in the large intestine that become cancerous over time. Doctors aren’t exactly sure what causes colorectal cancer, though they have identified several risk factors, including:

• Older age (50s and older)
• A family history of colorectal cancer
• Being of African-American descent
• Inflammatory intestinal conditions
• A personal history of cancer and/or polyps
• Being obese
• Smoking tobacco
• Diabetes
• Alcohol consumption
• A low-fiber and high-fat diet

In many cases, symptoms of colorectal cancer don’t appear until the cancer has progressed. Symptoms may, but do not always, include:

• Unintentional weight loss
• Changes in bowel habits
• A feeling that the bowel hasn’t completely emptied
• Fatigue and general weakness/malaise
• Rectal bleeding
• Bloody stool

In early stages, endoscopic mucosal resection, laparoscopic surgery, and polypectomies may be effective treatment options. In later stages, surgery, partial colectomy, or lymph node removal, alongside chemotherapy, targeted therapy, radiation, and immunotherapy, may be helpful. As Derrick explains, biomarker testing may also identify the genetic makeup of your tumor so that you can join targeted trials.

Fighting for Life

The situation changed slightly when Derrick spoke with Dr. Shah, his oncologist. Unlike the other doctors, who had given him the frightening 18-month timeline, Dr. Shah sat down and listened. She asked what Derrick was looking for; he said longevity and time. There were no promises, Dr. Shah said, but they would do the best that they could. Says Derrick:

“She really went all out for me. From the first chemotherapy cocktail that stopped working, to the next treatments, to the clinical studies that I said I was interested in, Dr. Shah was always, unfailingly in my corner.”

Derrick frequently mentioned that he was open to participating in clinical studies; after all, options were running thin, and he was looking for anything that might help. To start, he underwent biomarker testing to discover the genetic makeup and how to directly attack the cancer. His tumor showed higher-than-normal levels of human epidermal growth factor receptor 2 (HER2); this was driving cancer metastasis. This allowed him to enroll in a trial spearheaded by Seagen. Derrick explains:

“I’ve had a tremendous response to treatment. When I began the trial, my CEA numbers were some of the highest that Dr. Strickler, one of the investigators, had ever seen. The average for a non-smoker is between 0-3 or 0-5. My numbers are now in the average range at 1.1. My last CT scan showed no evidence of cancer, so this has been great for me.”

Since beginning treatment, Derrick has found hope. He’s living life to the fullest again by riding his motorcycle and taking vacations with his wife. He says:

“It has just been outstanding to have this time that wasn’t available to me before. At one point, I could only plan a month ahead. Now, I’m looking at the long-term. Tomorrow isn’t promised but I certainly look forward to it now.”

Becoming an Advocate

Since starting on his treatment journey, Derrick has also become a passionate advocate for biomarker testing. He believes that biomarker testing should be given to everybody with cancer; if everybody knew the genetic makeup of their tumors, then more targeted treatment could be given—or developed, if need be! More importantly, he shares his story to help others and give them hope, especially as incidences of colorectal cancer are increasing. To others, Derrick says:

“If you’re between 40 and 50 years old, get a colonoscopy. If you’re seeing signs and symptoms, don’t put it off. Go to the doctor. If you’re diagnosed with cancer, get biomarker testing. Participate in your treatment. Ask questions. Be involved. Have someone in your corner. I hated to drag my wife through this, but she was there the entire time. On the days when I couldn’t carry the load myself, she carried me—and the load. So, find a support system, whether that’s a family member or friend or even an online group. And most of all, stay positive. It’s key to winning this battle.”