The Educational Branch of COLONTOWN

COLONTOWN University

COLONTOWN University

ASCO GI 2025

PALTOWN empowers proactive patients and caregivers with educational tools and peer-to-peer support. Our programs provide connection, education, and support to thousands of colorectal cancer patients and caregivers.

As colorectal cancer (CRC) biomarker testing becomes more widespread and important for treatment decisions, understanding testing results can improve patient engagement, shared decision-making, and facilitate clinical trial enrollment. Our experience in the online 12,000+ member CRC community COLONTOWN (CT), suggests that communication of biomarker results to patients is not ideal. To learn more, we surveyed CT members on their biomarker testing experience.

All sample provider statements
(Preferred messaging ranked most liked to least liked)

When posed with 11 potential messages for a scenario with no actionable biomarkers, respondents overwhelmingly selected messages with further clarity on what ‘no actionability’ meant.

"These results confirm that the proposed treatment plan is indeed the best to treat your cancer." 40

"You'll see there are some additional mutations listed there which currently have no bearing on how we will treat your disease but are good to know about for potential future plans if needed." 34

"Biomarker test results are neither good or bad but provide information about your cancer and may help decide how to best treat your disease." 25

"You are in the majority of CRC patients whose tumors do not have actionable mutations." 23

"These results are very common and therefore consistent with Standard of Care" 20

"All of this boils down into these two key things to know about your disease: it is MSS and KRAS/BRAF Wildtype" 18​

"You do not have the mutations that currently have specific targeted treatments." 17​

"The percentage of patients with your biomarkers is about x% (would provide actual %)" 16

"This result has x impact on your prognosis (would include better or worse or no bearing)" 14

"The beginning of the report is what tells us about your tumor." 4

"There is nothing you need to know about your results." 0

Patient quotes

"I just wish they could slow everything down. I was so overwhelmed with EVERYTHING that the talk of my biomarkers was quick and then moving on. I should ask more questions now, I guess."

"I still feel completely in the dark about what my test results mean. I have no clue and no doctor has EVER discussed it with me."

 

"I knew nothing except I had stage 3 colon cancer and needed surgery then chemo...all bio marker discussions were based on my reading in COLONTOWN and then asking questions. I would have maybe changed my treatment but was totally under informed."

"I wish I would have been told that the treatment could completely change -- I had a hard time believing the change was for my best interest."

"I would have liked more detailed testing and a more comprehensive explanation of options and prognosis based on results."

"I would have liked our provider to actually discuss it with us."

"At beginning of treatment, everything is sooooo confusing. I wish my oncologist had clearly explained what my biomarkers were. We discussed it & she was on top of it & ordered it from the get go but GOLLY everything is just so overwhelming & the biomarkers for me (stage 4) are super important to know & understand."

What do you think?

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