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COLONTOWN participates in peer-reviewed study

COLONTOWN ·

COLONTOWN members provide data and inspiration for new study of young onset colorectal cancer patients.

Guest post by Manju George, PALTOWN’s Scientific Director

In March 2019, during CRC Awareness Month, I asked COLONTOWN members diagnosed with CRC before age 45 to post about their experiences with diagnosis and treatment. The intent was to share these stories on social media (#crc45andunder, #TheNewFaceOfCRC) to raise awareness of CRC as a young person’s disease.
 
I got a lot of responses from people as they were eager to share their stories and raise awareness. This thread caught the attention of Dr. Mary Abigail De Vera, who is herself a CRC survivor and does CRC patient outcomes research. 

When I was diagnosed with rectal cancer at the age 36, support, information, and help from COLONTOWN members got me through some of the most difficult parts of my cancer journey... Now living with no evidence of disease (NED), COLONTOWN continues to be a wonderful community, supporting my new “fight” against cancer, that is, the epidemiologic research that I am doing to identify and bring awareness to important patient issues. We say that “COLONTOWN is a community that no one ever wants to join but we are happy to be part of” and as someone who sees myself being a lifelong member, I consider it the best “side effect” of having cancer.

Mary De Vera, Study Senior Author
When Mary reached out to me about the idea for the study, we were both very excited about it. COLONTOWN Founding Mayor Erika Brown was fully supportive of it. Mary sought IRB approval for the study with us as co-investigators. She posted a link to the survey in COLONTOWN and I encouraged members to participate in it. Mary and her team analyzed the data and I helped with editing the manuscript.
The resulting paper, “Shared experiences of diagnosis and treatment of young-onset colorectal cancer: a patient-oriented qualitative study,” has just been published in the Journal of Pyschosocial Oncology Research and Practice.

This study demonstrates the power of the COLONTOWN model, where patients become partners in care, in treatment decisions, and even in research.

Erika Brown

There aren’t as many studies of this kind in the area of colorectal cancer as we would like. I am very happy to have been part of this great effort to raise awareness about CRC.  We thank COLONTOWN members for sharing their stories and making this study possible.

Manju George

Manju George

Scientific Director, PALTOWN, and Deputy Mayor for Education, COLONTOWN

COLONTOWN, a PALTOWN Community

PALTOWN's community for colorectal cancer patients and carepartners.