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.
“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.
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’,” Dooreck said in an interview.
Both Dooreck and 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,” 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, 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,’ ” 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.”
No Gain – Except Helping Patients
After Dooreck conceived of CRC POP, in September 2020, he described his plan for consolidating links to free resources in a video conference with the organizations he aimed to include. The organizations immediately agreed, and the text-based service, with technology provided free of charge by the marketing company EZ Texting, went live the following month.
“There’s no hook, there’s no cost, there’s no sale, it’s not monetized. There’s no gain except helping people,” Dooreck emphasized.
Lewis agreed: “I think it’s a great initiative, and it helps unify some of the guidance we give these folks.”
Lewis has the rare perspective of seeing the issue from standpoint of both an oncologist and a patient: Early in his hematology-oncology fellowship at the Mayo Clinic in 2009, he was diagnosed with multiple endocrine neoplasia type 1, and he subsequently underwent surgery to resect pancreatic neuroendocrine tumors.
He says that the buy-in for CRC POP from major support organizations and from gastroenterologists alike is important because most colonoscopies are performed and diagnoses are made in community settings by gastroenterologists who may or may not have formal connections with a cancer center, rather than in large urban or suburban networks affiliated with medical schools.
In most cases, he said, the gastroenterologist makes the CRC diagnosis, and hands the patient off to a surgeon, who may connect with a medical oncologist and/or radiation oncologist depending on the individual patient’s circumstance. This process can take weeks, and in the meantime, patients are left in limbo.
Offering patients multiple trustworthy resources through a simple text message is a particularly appealing part of the CRC POP initiative, and can help patients feel that they are more in control of their care, Lewis said.
Useful Resources, Multidisciplinary Care
The connection to resources offered by CRC POP is valuable and may be especially helpful for community-based or small gastroenterology practices; on the other hand, large academic medical centers may be able to provide more resources on their own.
“We have home-grown support services that we make available to patients if they either ask for them or if we ascertain that those services would be important components of their care,” Caroline Kuhlman, a nurse practitioner from The Tucker Gosnell Center for Gastrointestinal Cancers at Massachusetts General Cancer Center in Boston, explained in an interview. “Our approach to a newly diagnosed patient happens in the context of a multidisciplinary visit.”
“Newly diagnosed patients meet with a surgeon, a medical oncologist, sometimes a radiation oncologist if that’s going to be a part their care, and whenever possible during the same outpatient visit. Patients are also provided with written information about colon cancer, and we have a patient resource center that has even more information about support from various organizations,” she said.
Patients can also be referred as needed to other resources within the hospital system, including nutritionists, social workers who can help to determine whether patients could benefit from additional social and financial support, and educational resources such as information sessions on what to expect if they receive chemotherapy.
Similarly, Lewis said that, at Intermountain Health Care, patients newly diagnosed with cancer are contacted within 24 hours by patient navigators who help them manage concerns and expectations about their care and connect them to resources both in the hospital and the community.
Although their own practices differ in size and scope and in the resources they can offer patients, the clinicians interviewed for this article agreed with the central message and purpose of CRC POP: “You are not alone. You have our support.”
Lewis, Dooreck, and Ms. Kuhlman reported having no conflicts of interest relevant to the subjects discussed in this article.
This article originally appeared on MDedge.com, part of the Medscape Professional Network.
Content Source: https://www.medscape.com/viewarticle/961407?src=rss