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This Is What It’s Like to Be Young and Living With Colon Cancer
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Four years ago, Stacey Betancourt noticed a shift in her bowel movements. “It was almost like a switch that happened one day,” she tells SELF. “I started feeling pain in my rectal area, and my bowels became very irregular—I either had diarrhea or I was constipated. There was never any normal bowel movement.”
Betancourt was 27 at the time and didn’t think much of it, but she went to her doctor, who referred her to a gastroenterologist, thinking she might be suffering from irritable bowel syndrome, an intestinal disorder that causes abdominal pain, irregular bowel movements, and bloating. “The gastroenterologist said, ‘You’re really young, but you’re having these symptoms, so I’d like to do a colonoscopy,’ ” she recalls.
So, Betancourt underwent a colonoscopy, an internal test that allows a doctor to look at the inner lining of a patient’s colon and rectum. “[My doctor] saw the tumor right away,” Betancourt says. Biopsies confirmed what her doctor suspected: Betancourt had colorectal cancer. It was stage IV, the most serious stage of cancer, in which cancerous cells or tumors have grown into nearby tissue and may also have spread to the lymph nodes.
“I remember it like it was yesterday,” Betancourt says of hearing her diagnosis. “The first words that came out of my mouth were, ‘But I ‘m only 27.’ I couldn’t say much because I was in shock.”
Unfortunately, she’s not alone. A disturbing new study published in the Journal of the National Cancer Institute in late February found that the rates of colorectal cancers (cancers of the colon and rectum) are increasing among millennials. While nearly 90 percent of all colorectal cancer cases are diagnosed in people over age 50, colon cancer incidence rates (the number of new cases per population in a given time period) in 20- to 39-year-olds have increased between 1 percent and 2.4 percent annually since the mid-eighties, and rectal cancer incidence rates have increased 3.2 percent each year from 1974 to 2013 in 20- to 29-year-olds.
Like Betancourt, Allison Rosen is among those numbers. The cancer advocate was diagnosed with colon cancer when she was 32—which, she tells SELF, was the worst news of her life.
Rosen suffers from Crohn’s disease, a chronic inflammatory bowel condition, and had regular colonoscopies as a result. “I’ve always had gastrointestinal issues and have always been aware of my bowel habits,” she says. Suddenly, she noticed that she went from going to the bathroom regularly to being constipated for a few days. She also started to see blood in her stool, so she went to her doctor, who did an X-ray that discovered she had a blockage in her colon. And, after a colonoscopy and biopsy, it was confirmed—she had cancer.
Rosen says she had to move quickly with treatment since previous colonoscopies hadn’t picked up on the cancer, which meant it was fast-moving. Luckily, she had a friend who worked at MD Anderson Cancer Center and referred her to a surgeon and oncologist. Rosen went through 5.5 weeks of chemotherapy and radiation, had a recovery period, and then had surgery to remove her entire colon. “Because of Crohn’s disease, my colon was at risk of developing cancer again,” she explained. She was given an internal J pouch, a surgically-constructed reservoir that helps a patient store and pass bowel movements. Then, she had chemo again.
Betancourt went through a similar process. After her diagnosis, she had radiation “almost right away,” followed by several months of chemotherapy and then her first surgery to remove the tumor, which was located in her rectum. She was also given a temporary ileostomy bag, a special external container that collects waste products when a person is unable to have bowel movements on their own.
“I was completely frightened by it,” she says. “The very thought of having the ileostomy bag made me cry. I was single and I thought, ‘Who is going to want to date me?’ I felt like I would be undesirable—it was embarrassing almost.” Eventually, she came to terms with it. “I thought, ‘This is temporary, I can do it,’ ” she says. “It didn’t affect me like I thought. I could go swimming in the pool, showered like normal, I was working and nobody saw it and nobody knew. The fears were all in my head.”
But Betancourt ended up losing her long hair from a second round of chemo, which she says was devastating: "I felt like it was so much of my identity.”
However, she ended up wearing wigs and “had a lot of fun with it.” Betancourt had to have additional surgeries, including a hip replacement after one of the chemotherapy drugs she was taking caused irreversible damage to her hip. “I had to use a cane,” she says. “It was very difficult for me to adjust to that.” Betancourt calls her cancer journey a “whirlwind,” noting that she’s still battling it.
“Technically, I’m considered terminally ill because I have tumors in my liver and lung, and surgery is not really an option for me—the cancer won’t go away,” she says. “However, I’m treatable.” Betancourt says she’ll be on chemotherapy drugs for the rest of her life with the goal of keeping her cancer stable. “That’s been successful up until recently, when the tumor in my lung grew almost a centimeter,” she says. Soon, she’s about to undergo a clinical trial.
Despite her health challenges, Betancourt says she’s the happiest she’s ever been, adding that she’s optimistic about the future. “I feel really empowered and grateful and blessed that I’m strong enough to tell my story,” she says. “Nobody likes to talk about their bowel movements, but for me it’s good to spread the word.”
Now cancer-free, Rosen says she wishes she would have asked more questions about how her treatments would have impacted her fertility. At one point, she talked to her doctor about freezing her eggs, but ultimately she ended up not undergoing the process in order to treat her cancer right away.
“I had a night when I was on the toilet and blood was gushing out,” she says. “I decided if I waited, what good would it be to have my eggs frozen if I wasn’t alive?” Rosen says that was a hard decision for her. “[The dream of carrying my own child] was taken away from me by cancer, which is horrible, but I’ve gotten over it. I know one day I’ll make an amazing mom.”
Rosen’s life has been altered by cancer in other ways, too. A routine colonoscopy caused a puncture in her J pouch, and she ended up having a temporary ileostomy bag in hopes that her J pouch would heal. That didn’t happen, and she had to have surgery to remove her rectum and anus, and to have a permanent ileostomy bag installed.
“That is one of the hardest things I struggle with now,” she says. “I am single and trying to date.” Rosen says she’s proud of her scar, but “trying to explain an external poop bag isn’t very easy.” Rosen says some people find it empowering, but she’s not quite there yet. “If I was married and had kids, it wouldn’t be that big of a deal I don’t think,” she says. “ But people my age already struggle with their body image—and now this poop bag is part of my body.”
Rosen participated in a body image fashion show for cancer patients at MD Anderson and says it helped. “I’m trying to grow to be that person that’s proud of this new part of my body that I never expected to have,” she says. “I think it’s a process that I’ll be working through for a long time . . . finding my new normal is a process.”
Rosen and Betancourt stress that it’s important for people to get themselves screened if they start exhibiting symptoms of colorectal cancer, which largely include frequent bleeding when you poop, a change in bowel habits, constant bloating, constant gas, and having thin, ribbonlike stools. And, if your doctor brushes off your symptoms and they persist, find another.
As Betancourt says, colorectal cancer doesn’t discriminate based on age: “This is not just an old person’s disease.”