The words “you have colorectal cancer” can concentrate a patient’s mind, but certainly not in the way that the clinician delivering the bad news intends.
Dr. Brian Dooreck
“A lot of my patients, frankly, have told me that on the first visit the only thing they really hear is the diagnosis of cancer, confirming a malignancy, and everything else that follows is what I call the ‘2 minutes of terror.’ Everything else gets drowned out, and they don’t hear my comments on diseases and sometimes my hopefully reassuring comments on prognosis,” said Mark A. Lewis, MD, director of the gastrointestinal oncology program at Intermountain Healthcare in Murray, Utah, who is himself a survivor of a rare cancer.
An estimated 150,000 people hear something like “you have colorectal cancer” in the United States each year, according to American Cancer Society estimates.
Even before the diagnosis, the patient, still groggy from sedation after a colonoscopy, may wake up and be told “we’ve found something; I’ll call you in a few days when we get the pathology results.”
You don’t have to be a psychiatrist to understand that times of great emotional upheaval, stress, or uncertainty are not ideal for decision-making, especially when the person who is asked to decide is facing a challenge that may seem overwhelmingly complex.
Many patients’ first thoughts are to go online for information, but that too can be overwhelming. For example, a Google search for the words “colorectal cancer” turns up roughly 134 million results, in six-tenths of a second, no less.
There are of course solid, reliable sources for information out there, and reliable information is a very good place to start, as noted by the staff at the Mayo Clinic in Rochester, Minn.
The Mayo website offers 11 tips with for coping with a cancer diagnosis. First among the recommendations is “get the facts about your cancer diagnosis,” and that’s the inspiration behind CRC POP.
Text COLON to 484848
“There are 13,000 of us gastroenterologists in the country, and we diagnosis colorectal cancer 150,000 times a year,” said CRC POP program creator Brian Dooreck, MD, from Memorial Healthcare System in Pembroke Pines, Fla.
When the doctor tells patients the results “their world is turned upside down, they’re shocked, and they don’t pick up much after the word ‘cancer’,” Dr. Dooreck said in an interview.
Both Dr. Dooreck and Dr. Lewis noted that, after going home with a diagnosis of colorectal cancer, a large majority of patients will go online to find information about their diagnosis.
“We know from studies and anecdotal experience that the odds that someone will try to research their own diagnosis are in the 97% range, and then they’re going to run into the pluses and minuses of search engine optimization,” Dr. Lewis said.
As even the most casual Internet user can attest, available medical information can range from the practical to the preposterous, from the National Cancer Institute’s Cancer.gov to a Facebook post on Aunt Tillie’s miracle mayonnaise cure. Helping patients to quickly identify which resources are valuable and trustworthy is the overarching goal of CRC POP, Dr. Dooreck explained.
“What we created with the Colorectal Cancer Provider Outreach Program is that it now allows gastroenterologists to have a conversation with a patient – I can say ‘Now listen, take out your phone, and text the world COLON and send it to 484848.”
Doing so returns a text in a few seconds with the words “You are not alone. You have our support. Here. Now,” and a blue heart emoji, followed by a link that takes the user to a web page with a document containing contact information for the ACS, Colorectal Cancer Alliance, Fight Colorectal Cancer, Colon Cancer Coalition, and Colon Cancer Foundation. Free resources offered by the various organizations include a helpline staffed 24 hours a day (ACS), peer support online or one-to-one and financial assistance (Colorectal Cancer Alliance), access to screening for the under- and uninsured in select areas (Colon Cancer Coalition), and links to a colorectal cancer patient registry (Colon Cancer Foundation).
“I can tell patients ‘Hey listen, go home, call these groups, get on their websites. I’ll call you in a week; call me if you need me. We’re gonna figure this thing out together,’ ” Dr. Dooreck said. “This is a great place to get resources here and now. It’s a very different shift from going home without anything other than a treatment plan.”