Never Too Young Survey Report
Never too young
Every year, the Colorectal Cancer Alliance launches its annual survey of young-onset colorectal cancer patients, survivors and caregivers. The Alliance uses the survey to learn about and track the self-reported medical, psychosocial, and quality of life experiences of these often overlooked groups.
This year, the Alliance solicited participation over social media, email, and web-based communities.
Only 35% of respondents had biomarker testing done at diagnosis and 21% never had testing
81% reported at least three colorectal cancer symptoms prior to diagnosis
50% of medical providers failed to share sexual dysfunction risks prior to the start of treatment, yet 65% of survivors now suffer from dysfunction
Do you feel your doctors dismissed the signs and symptoms of colorectal cancer due to your age?
Misdiagnosed or Dismissed
Younger patients diagnosed between the ages of 19-39 were more likely to report that their concerns were dismissed by their doctors than patients who were diagnosed between the ages of 40-50.
Women were more likely to report that they felt their symptoms and concerns were dismissed by their doctor.
Only 31% were referred to a reproductive endocrinologist, even though 37% of women & 16% of men reported treatment left them infertile or sterile
While 75% of patients and survivors were employed full-time at the time of diagnosis, 28% of them are no longer working
70% of stage III and 61% of stage IV patients did not have any discussion of clinical trials before starting treatment
Mistakenly Diagnosed With...
54% of survey respondents were misdiagnosed, 43% with hemorrhoids alone or in combination with other conditions, 17% with anemia alone or with other conditions, 12% with irritable bowel syndrome (IBS) alone or with other conditions, and a startling 11% with mental health issues either alone or with other conditions.
Patients and survivors were also misdiagnosed with appendicitis, symptoms attributed to childbirth, diverticulitis, gastric disorder, gallbladder, gluten allergy, urinary tract infection, and gynecological issues.
Mistakenly Diagnosed Conditions
Too Many Doctors & Appointments
Many patients reported they had to see multiple doctors and had multiple appointments before they were correctly diagnosed with colorectal cancer.
Seventy-five percent of patients and survivors reported they saw at least two different physicians, and 36% percent were seen by three or more physicians.
Approximately 9% of patients indicated they were seen by at least five different physicians prior to their diagnosis.
Download Previous Young-Onset Survey Reports
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