Morristown High School librarian Debra Gottsleben is accustomed to addressing students, teachers and fellow librarians.
Earlier this month, she faced a new audience: Dozens of doctors.
Gottsleben spoke in New Orleans at the annual conference of the American Urological Association.
“I knew my story, and knew it had information that doctors would find valuable. I know they want to know what their patients are thinking,” said the Morristown resident, one of only 11 patient advocates invited to present abstracts.
Her paper focused on a Facebook support group she established for patients like herself — with diagnoses of kidney cancer that later proved incorrect.
In 2015, Gottsleben’s urologist told her she almost certainly would lose a kidney. Putting her library skills to work, she ventured to the National Institutes of Health for a second opinion. Doctors there spared the organ, removing five tumors that were benign.
Yet she had trouble shaking her initial diagnosis, and how it was conveyed. Nor could she find any followup studies of similar patients, to allay her concerns about developing cancerous tumors.
Curious if others were experiencing the same doubts and frustrations, Gottsleben joined KCCure, an advocacy group for kidney cancer patients. She was named co-chair of a patient advisory board, and created the online group for people with benign and/or small “renal masses.”
The group now has more than 700 active members. Gottsleben posts information on kidney research and new diagnostic methods, and provides a place where patients can share emotional support.
“Being told you have cancer doesn’t get erased,” one patient posted.
Gottsleben hopes doctors will use the site to gather data and formulate followup protocols.
Her talk resonated with at least one listener.
“Hearing ‘cancer’ can alter (a) patient’s perception of disease…permanently,” tweeted urologist Phillip Pieroazio. “We need to do a better job as docs, explaining small renal masses in balanced, patient-centric terms.”
Gottsleben, the spouse of former Morristown mayor Jay DeLaney Jr., serves on the town planning board and is an adjunct professor at Seton Hall University, where she polished her library skills while earning a master’s degree in education.
During her studies, did she anticipate that one day she would be educating M.D.’s?
“Absolutely not!” Gottsleben said. “Never in a million years did I think I would be going this route.”
