Oct. 20, 21 — “You have colorectal cancer.”
An estimated 150,000 people hear those words or something like them in the U.S. each year.
Even before the diagnosis, the patient, after having the pleasures of bowel preparation and a colonoscopy, may wake up still groggy from sedation 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 and frightening.
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. Those results can range from the helpful and important, such as the website Cancer.Gov from the U.S. National Cancer Institute, to the stupid and downright dangerous, such as a Facebook page touting Aunt Tilly’s Miracle Mayonnaise Cure for Colon Cancer. (OK, so we made that last one up, but you get the idea.)
One of the most trusted online health websites is maintained by the Mayo Clinic in Rochester, MN. It offers 11 tips for coping with a cancer diagnosis, the first of which is, “Get the facts about your cancer diagnosis.” That recommendation is the inspiration for the Colorectal Cancer Provider Outreach Program (CRC POP).
Text COLON to 484848
“There are 13,000 gastroenterologists in the country, and we diagnose colorectal cancer 150,000 times a year,” says program creator Brian Dooreck, MD, of Memorial Healthcare System in Pembroke Pines, FL.
“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 word COLON and send it to 484848,” he says.
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 American Cancer Society and other support organizations, including the Colorectal Cancer Alliance, Fight Colorectal Cancer, Colon Cancer Coalition, and Colon Cancer Foundation.
Free resources from the organizations include a helpline staffed 24 hours a day, peer support online or one-to-one support, financial assistance, access to colon cancer screening for under- and uninsured people in select areas, and links to a colorectal cancer patient registry and information.
“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. 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,” Dooreck says.
No Gain — Except Helping Patients
The text-based service is free.
“There’s no hook, there’s no cost, there’s no sale, it’s not monetized. There’s no gain except helping people,” Dooreck says.
Mark A. Lewis, MD, director of the gastrointestinal cancer program at Intermountain Healthcare in Murray, UT, himself a survivor of a rare cancer, says the program can help newly diagnosed patients cut through the fog that can follow a cancer diagnosis.
“I think it’s a great initiative, and it helps unify some of the guidance we give these folks,” he says.
Lewis has the rare perspective of seeing the issue from both the oncologist’s and the patient’s standpoint: Early in his training as a hematology-oncology fellow at the Mayo Clinic in 2009, he was diagnosed with the rare syndrome multiple endocrine neoplasia type 1, an inherited condition that causes tumors to grow in hormone-producing glands such as the thyroid or pancreas. He had surgery to remove tumors in the pancreas.
He says the buy-in to CRC POP from major support organizations and from gastroenterologists alike is important, because most colonoscopies are done and diagnoses of colorectal cancer are made in community settings by doctors 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 says, the gastroenterologist will make a cancer diagnosis and hand the patient off to a surgeon, who may connect with an oncologist and/or radiation oncologist, depending on the 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 it can help patients feel they are more in control of their care, Lewis says.
The connection to resources offered by the program are only part of the package of services that patients receive at large academic medical centers.
“Our approach to a newly diagnosed patient happens in the context of a multidisciplinary visit,” says Caroline Kuhlman, a nurse practitioner at Mass General Cancer Center in Boston.
Patients meet with a surgeon, oncologist, and sometimes radiation oncologist, she says. They are also given written information and can access a patient resource center.
Patients can also be referred as needed to other resources in the hospital system, including nutritionists, social workers who can help them find out more about social and financial support, and educational resources such as information sessions on what to expect if they will be getting chemotherapy.
“We have homegrown 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,” Kuhlman says.
Similarly, at Intermountain Healthcare, 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 practices differ in size and scope, Dooreck, Lewis, and Kuhlman all agree with the central message and purpose of CRC POP: “You are not alone. You have our support.”