Report: 82% of Young-Onset Colorectal Cancer Patients Were Misdiagnosed

Colorectal Cancer Alliance survey report shows 73% of young-onset patients presented with advanced-stage disease, and 45% were caring for a child under 10 years old at the time of diagnosis.

December 14, 2017 (Washington, D.C.) – The results are in from a groundbreaking global survey of young-onset colorectal cancer survivors, and the concluding report confirms startling data published by researchers and clinicians in the field, while adding the perspective of survivors.

National nonprofit Colorectal Cancer Alliance received 1,535 survey responses over a one-month period from young-onset colorectal cancer survivors who were diagnosed with the disease prior to turning 50 years old. This group of survivors is notable as colorectal cancer is widely considered a disease that afflicts seniors, but the incidence rate in young people is climbing.

Results show a population of survivors who often faced barriers to screening due to their age, were most often misdiagnosed at the start of their journey, and then received a diagnosis of late-stage colorectal cancera disease that is highly treatable if caught early.

More survey results include:

  • 15% reported that an emergency room visit led to a colonoscopy and their diagnosis
  • 62% did not have a family history of colorectal cancer
  • 67% saw at least two doctors before being diagnosed with cancer
  • 71% were diagnosed with colon cancer, and 20% were diagnosed with rectal cancer
  • 82% were initially misdiagnosed before ultimately being diagnosed with colorectal cancer

“This survey report puts a much-needed focus on the experience of young-onset colorectal cancer patients and survivors, who are experiencing subpar care due to a lack of understanding about this issue among physicians and young people alike,” said Michael Sapienza, CEO of Colorectal Cancer Alliance. “The Alliance stands ready to make a positive impact in this area, but data is prerequisitethis report will help shape our efforts.”

The Colorectal Cancer Alliance has committed to investing $3 million for young-onset colorectal cancer research over three years. To kick off the initiative, the Alliance will announce in January the recipient of a $125,000 peer-reviewed research grant from the Chris4Life Research Program, which will fund research into young-onset colorectal cancer.

Since 1994, diagnosis of colorectal cancer in adults ages 20-49 have increased by 51%, according to the National Cancer Institute. There is not a consensus as to why the rate is climbing and there is need for more research in this area.

“We received responses from 26 countries on six continents that together show a global issue of colorectal cancer impacting people under the age of 50, demanding further research and deliberate action to save lives,” said Patrice Brown, senior director of program development at the Colorectal Cancer Alliance. “Far too often we hear stories about colorectal cancer impacting young lives. This report gatherers these stories in one place, giving voice to the unique challenges of young-onset patients and survivors.”

Colorectal cancer is highly treatable if detected early, but because the standard screening age is 50 and patients often aren’t aware of the symptoms of colorectal cancer, the disease is often overlooked in young people, resulting in lack of treatment and eventual diagnosis at later stages.

The report also includes personal feedback about the young-onset diagnosis and cancer journey from the survivors who have lived it. Themes that emerged included challenges related to symptoms being taken seriously by doctors when seeking a diagnosis, finding age-appropriate support, and sexual function during and after treatment.

For more information visit ccalliance.org or download the report here.

About the Colorectal Cancer Alliance

The Colorectal Cancer Alliance is a national nonprofit committed to ending colorectal cancer. Working with our nation of passionate allies, we diligently support the needs of patients and families, caregivers, and survivors, eagerly raise awareness of preventative screening, and continually strive to fund critical research. As allies in the struggle, we are fiercely determined to end colorectal cancer within our lifetime. For more information, visit ccalliance.org.

3 replies
  1. Bob
    Bob says:

    I never considered my colon cancer as early onset as I was 48 at the time. My cancer was diagnosed early (Stage 1) and easily treated with surgery. This good outcome is entirely due to my GP being forward thinking and sending me for a colonoscopy at the first sign of symptoms. If this w as the norm for younger adults who present with typical symptoms there would not be a need for this conversation.

    Reply
    • Cheryl Fleming
      Cheryl Fleming says:

      HI Bob
      Very similar to my situation but I was 44. I had surgery only and am now almost 53. Wondered what your health situation is like currently.

      Thank you
      Cheryl

      Reply
  2. Rosie
    Rosie says:

    Hi Bob, June 3, 2018 will be my 40 year anniversary with my “Rosie”. I love your discussion because I believe my GP who immediately said get to a surgeon right now. I went to my surgeon and he said “do not stop to pick up a nightgown, get to the hospital and I will meet you there. When we spoke at the hospital I had absolutely no idea what he was talking about. I only new the word “big C” but that was it. He did the surgery and again began to explain and I still didn’t know. I told him I hadn’t even looked and what did it look like. He said a “rose bud” and at the moment my “daughter Rosie” was born. I have never worn a bag, I irrigated as soon as possible and have irrigated ever since. I have trained some to irrigate in my support group and they are thrilled. Some of course don’t want to hear about it. A friend recently bought me an Ostomy book because the opening chapter was entitled (my words exactly) “I’m going to have a what”. It’s a great book. I take great pride in what my support group does. The best to you, chin up.

    Reply

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