In 2018, Casandra Costley, then 32, noticed rectal bleeding. But, she thought it was a hemorrhoid and never thought to tell her doctor.
“I ignored it. I had some rectal pain as well, which I also thought was a hemorrhoid,” Costley, 38, of Utah, tells TODAY.com. “It would come and go.”
Then, in February 2024, Costley felt “run down,” lost her appetite and observed that her bowel habits changed. Slowly, her new bathroom habits dramatically impacted her participation in day-to-day life.
“I struggled to function,” she says. She eventually visited a gastroenterologist, who performed a colonoscopy, and she learned she had Stage 4 colon cancer. Since her diagnosis, she’s been sharing her experiences on social media.
“It’s not something that people are really comfortable talking about still, bleeding and bowel habits,” she says. “(That) means it doesn’t get talked about, and so I thought I can do that. It’s not hard for me to talk about it.”
Rectal bleeding
When Costley first noticed rectal bleeding, she assumed it was a hemorrhoid, as they run in her family.
“I was like, ‘Oh, just like the rest of my family,’” she says.
Over the years, the bleeding and pain occurred intermittently, what Costley thought was normal. Last year, she underwent weight loss surgery and changed her diet, and her symptoms disappeared.
“I thought, ‘Oh, maybe the hemorrhoid healed itself,’” she recalls. “I didn’t know too much about it.”
But then the bleeding returned with new symptoms. Soon, Costley lost her appetite, and her bowel habits changed.
“All day long I felt like I had to have a bowel movement,” she says. “It was exhausting and really weird, and for some reason I still didn’t bring it up (to my doctor).”
When her symptoms interfered with her daily routine to the point where she struggled to get through the day, she asked her urologist to recommend a GI doctor. That doctor ordered a colonoscopy, and when Costley woke from it, she knew something was wrong.
“He showed me the picture of my tumor,” she says. “He was like, ‘I’m very concerned that this looks like advanced colon cancer, but let’s get a biopsy.’”
She had never considered her bleeding and pain could be cancer.
“I thought he was going to tell me I had hemorrhoids or IBS or something,” she says. “(Colorectal cancer) is still not on most people’s radars.”
The doctor also scheduled a CT scan and an MRI. Three days after the biopsy, Costley knew what type cancer she had — invasive adenocarcinoma, which is the most common type of colon and rectal cancer, according to the American Cancer Society. The CT scan revealed the cancer had metastasized to her liver and possibly her lung.
Soon, she met with a GI surgeon.
“I was thinking, ‘Well, they just need to go in and take it out,’” Costley recalls. “When I met the GI surgeon, she explained that the tumor is a T3, which is the most advanced type, because it’s grown through the colon … (and) to go in and take it out would be dangerous because they can’t get clean margins.”
Instead, the surgeon recommended Costley meet with an oncologist, who recommended “aggressive chemo” for three months.
After this, she’ll undergo scans to see if it’s working, and doctors will add to her treatment plan.
“If I respond to it and we can get the tumors to shrink down, then they could possibly go in and take out the tumor in my colon,” she says.
She’s felt intense side effects from chemotherapy after only a few rounds of it.
“The chemo makes me pretty sick,” she says. “Because I’m symptomatic from the cancer, it takes any symptoms I was having and makes them way worse.”
Often, she feels pangs in her liver, back and hip, and the nausea and lack of appetite has become “more intense.” Still, when she feels well, she tries to exercise, and feeling ill hasn’t interfered with her ability to parent.
“I feel grateful. I’ve been able to get out of bed every day and still (try) to get my daughter to school by myself when I can,” she says. “I like to do that, but it’s hard.”
Costley and her family often make jokes and try to find the humor and joy in life. Her almost 12-year-old daughter, Annika, says in her nightly prayers, “Please bless mom’s butt.”
“It makes us laugh, but it also brings her comfort, and so we’re using humor to cope,” Costley says. “We understand the severity of it. It’s too heavy not to laugh about it.”
Colon cancer in young people
Colon cancer is the second-leading cause of cancer deaths in women under age 50, TODAY.com previously reported. Experts remain uncertain as to why this type of cancer has been occurring more often in young people but suspect it’s a combination of genetics and lifestyle factors, such as being sedentary and a diet with too many processed foods.
“It’s at least possible that those are the things driving this. We do see more men than women having colorectal cancer,” Dr. William Dahut, chief scientific officer for the American Cancer Society, told TODAY.com in 2023. “Whether that’s again due to a poor diet or obesity and less exercise is at least a possibility.”
As with any type of cancer, early detection leads to better outcomes. Recognizing the symptoms and talking to a doctor about them can lead to quicker diagnosis.
Symptoms include:
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Abdominal pain with no reason
“Patients don’t necessarily bring up the symptoms,” Dr. David Liska, director of the Young-Onset Colorectal Cancer Center at Cleveland Clinic told TODAY.com in 2023. “It’s a topic that people aren’t comfortable talking about.”
‘A club you don’t want to belong to’
When Costley goes to the infusion center for chemotherapy, she’s often the youngest person there, which can feel very isolating. Sharing her story on social media has connected her with other young people with cancer.
“It’s a club that you don’t want to belong to, the cancer club,” she says. “But it’s a really, really supportive community and … there are so many people helping me to understand what I am going through.”
Costley also appreciates hearing from people who have lived with Stage 4 colon cancer for a long time.
“Those are my favorite stories because I have so much hope that I will get to do that, too,” she says. “Their stories give me hope and give me even more reason to fight.”
Since her diagnosis, Costley has discovered “how precious life really is.”
“I’m an important part of our precious life in our home, and I’m not saying that to be conceited,” she says. “It’s helped me realize our whole house of cards will crumble if something happens to me. So I just want to fight hard to be able to say and be an important part of my little family.”
Having “the world’s most supportive husband,” parents, siblings, step parents and step siblings means that Costley enjoys a huge support system as she continues her cancer treatments.
She hopes that by sharing her journey on social media she will help others learn more about colon cancer and find hope when facing a worrisome diagnosis.
“I hope that anyone who could be in the same boat learns that these are symptoms to go to your doctor and talk about and also not be afraid to talk about it,” she says. “Life is so precious and so fragile and even in a really, really scary, hard time, there’s still so much beauty to be found and happiness to be had.”
This article was originally published on TODAY.com