What it’s like to have lived through rectal cancer

Six people share their diverse experiences and emotions along with photos that illustrate their cancer journeys.

5:00 AM

Author | Mary Clare Fischer

rectal cancer photo cards elicitation
In a novel study, 20 patients submitted photos and did interviews about the psychological impact of rectal cancer. Photos courtesy of study participants

"Over the 18 months since the surgery, I've been getting steadily better. So the body does heal. It just takes longer than a person would think." –Scott Traviglia, a pseudonym*

Between September 2020 and February 2021, 20 people who'd had rectal cancer picked up the phone or joined a Zoom call and talked about their feelings. Some spoke of their immense sadness during diagnosis and treatment, others of their lingering anxiety and fear of their cancer coming back. A few felt lucky to be alive. A few wondered if death would have been better.

These nuanced reflections were continuing a conversation started a few months earlier, when the patients submitted photos that illustrated important aspects of their rectal cancer journey. It was the first time researchers had used a method called photo-elicitation, in which photos chosen by the participants are used as a stimulus and guide to examine the psychological impact of rectal cancer and the coping strategies patients employ.

"As many as half of United States cancer survivors report that their physicians never discuss their social and emotional needs after cancer therapy, even though we know that distress is highly prevalent among cancer survivors and that patients with rectal cancer specifically are likely to report unmet emotional needs after treatment," said Pasithorn A. Suwanabol, M.D., M.S., an assistant professor at the University of Michigan Medical School, a colorectal surgeon at the Ann Arbor Veterans Affairs Healthcare System and the senior author of the study. "As part of a program that is nationally accredited for rectal cancer care, we felt compelled to start exploring those narratives."

Below is  a selection of these images as well as quotes from the interviews that followed to give a glimpse into what it's like to be on the other side of rectal cancer.

( Phyllis Pellerito)

"The crayons represent the color. The red represents the blood that I saw for so long and the blood that I still look for. I still, every day, look at that paper to make sure there's no red on it." - Phyllis Pellerito

( Beth Carver)

"They brought this old Airdyne stationary bike down. Of course, I'm in the hospital, so I only have a gown – no bike shorts or anything – but I don't care. I put some towels under my seat, and off I went. I was always on that bike pedaling. So, when the second surgery happened, without me even saying anything, the doctor had ordered this bike already put in my room. It made my day." - Beth Carver

( Scott Traviglia)

"What that signifies is that I have to get up in the middle of the night and use the restroom. It's rare that I get an eight-hour stretch of sleep. I've traveled so much in my life that it's really no problem for me because I can get up, use the restroom, come back and fall asleep in five minutes. I've made so many trips, I was used to falling asleep on airplanes. Over the 18 months since the surgery, it's been getting steadily better. So the body does heal. It just takes longer than a person would think." - Scott Traviglia

SEE ALSO: How Colon and Rectal Cancer Differ

( Ben Jackson)

"Initially, you buy this [medication] from Costco or Sam's Club. And it's very, very inexpensive. It was something like 440 pills for $5.50. And it was available everywhere. Well, probably a couple years ago or so, the Food and Drug Administration outlawed the sale of Imodium over the counter. It has to be a prescription now. You get much less for much more money." - Ben Jackson

( Diana Prince)

"People sent me care packages. Many came around and dropped off food. For nine months, I didn't go to the grocery store, and I didn't cook, but I had had food every day. People just helped out. It's amazing what support, emotional support, does." - Diana Prince

SEE ALSO: A Team Approach and Clinical Trials Push Rectal Cancer Care Forward

( Ida Smith)

"Rectal cancer has flipped my life upside down. We were people on the move all the time. We lived by the water. We owned property up north. We did a lot of outdoor activities. We were very active in our lifestyle. Today we stick close to home. It's been life-changing." - Ida Smith

SEE ALSO: A Team Approach and Clinical Trials Push Rectal Cancer Care Forward

( Pellerito)

"There are days I can leave the home without this bag. I don't need it as much as I used to, but I still keep it with me. I can't even begin to tell you how much things have improved. It's never like what it was before all this happened. It's so much better. If there's one thing that I can tell anybody, it's that it will improve, it will." —Pellerito

*Pseudonyms have been used for all participants.

Paper cited/DOI: "It's not fine: A photo-elicitation study of rectal cancer survivors' emotions and coping strategies," Surgery. DOI: 10.1016/j.surg.2021.10.067


More Articles About: Cancer Care Colorectal Cancer Mental Health Cancer: Cancer Types
Health Lab word mark overlaying blue cells
Health Lab

Explore a variety of healthcare news & stories by visiting the Health Lab home page for more articles.

Media Contact Public Relations

Department of Communication at Michigan Medicine

[email protected]

734-764-2220

Stay Informed

Want top health & research news weekly? Sign up for Health Lab’s newsletters today!

Subscribe
Featured News & Stories physician talking to patient with lab researcher in background
Health Lab
Older adults left out of clinical research trials
Including older adults in research can be beneficial, explains a Michigan Medicine research, who says more should, and can be, done to have their insights.
older woman on phone with credit card in hand
Health Lab
Health plays a role in older adults' vulnerability to scams
Most older adults have faced an attempted scam, and some have been defrauded, but rates were higher among those with health problems or disabilities.
graphic drawing of colonoscopy scan with large intestine vials patient on bed doctor
Health Lab
Investment in free follow up colonoscopies will pay off
Free colonoscopies for people whose at-home stool tests (such as Cologuard and FIT) turn up signs of potential cancer are now covered by insurance, and a study shows this will save money.
DNA helix technology robotic cybernetic image
Health Lab
Metabolite tells cells whether to repair DNA
Findings from researchers at the University of Michigan Health Rogel Cancer Center, published in Cancer Discovery, show how a specific nucleotide metabolite called GTP controls responses to radiation and chemotherapy in an unexpected way.
Doctors with patient while on exam table
Health Lab
Can personalized care prevent overscreening for colorectal cancer in older adults?
Study reveals presenting adults between 76 and 85 with personalized information about the benefits and harms of colon cancer screening decreases excess screening
Michigan Medicine neuroscientist Huda Akil, Ph.D., accepts National Medal of Science from President Joe Biden.
News Release
U-M neuroscientist Huda Akil, Ph.D., wins National Medal of Science
Distinguished U-M neuroscientist Huda Akil, Ph.D., has received the nation’s highest scientific honor – the National Medal of Science -- for her contributions to science and their impact on humankind’s understanding of depression, anxiety, addiction and more.