- Paula Chambers Raney suffered abdominal pain, weight loss, and bloody stool for more than a year.
- Doctors told her it was her diet, acid reflux, a stomach bug, or even something red she ate.
Paula Chambers Raney was 43 when she started experiencing diarrhea, painful gas, and stomach gurgling after meals. Once, what felt like gas buildup in her stomach hurt so badly, "I almost screamed," she said.
Raney, who then ran her own catering business near Houston, didn't have insurance but said she shuffled through several doctors over the course of about a year. She was told it was probably a stomach bug, or acid reflux, orirritable bowel syndrome, and given various medications but no relief.
"I was taking whatever the doctor said. Of course you're like, 'OK, that sounds good to me, you're the doctor,'" Raney told Insider. "I don't do that anymore, by the way."
Now a 53-year-old a colorectal cancer survivor, election worker, and advocate with the organization Fight Colorectal Cancer, Raney knows the importance of speaking up for herself. She shared her story with Insider to encourage others to do the same. Advocacy "has become a big part of my life," Raney said, "because what happened to me was so insane."
Raney had just gotten married when her symptoms came to a head
Back in 2014 when Raney's symptoms began, she wanted to believe they weren't serious and would pass.
She and her partner, Lara, were planning their wedding in New York City, where — after 28 years together — they could legally wed even though their marriage wouldn't be recognized in Texas until 2015.
Raney had also started a new job that came with health insurance. But she struggled to show up.
"I was exhausted halfway through the day," she said. "Every time we would eat lunch, I couldn't keep it down." When she got a blood draw so she could donate, it revealed extremely low iron. Still, doctors just told her it was probably related to her diet or menstrual cycle. "I got this kind of advice over and over and over," she said.
By the time her wedding came around, in October 2014, Raney had lost about 40 pounds. "I look at the pictures now, I was kind of gray, because I was anemic and I was really sick, but I didn't know," she said.
Her symptoms came to a head the next day while watching a Broadway musical. "The room was spinning, and I was sweating, and I was nauseous, and I was shaking, and I was like, 'God, this play is terrible,'" Raney jokes now. "I barely made it out of the theater."
Back at her friend's apartment, Raney said she "had an accident like I've never had before." She began calling in sick to work so often she was fired — right before the 90-day mark at which her health insurance would kick in.
Still, no answers. When she noticed blood in her stool in November, clinicians told her she "probably just ate something red," according to Raney.
Finally, in January, Raney convinced clinicians to conduct a stool test. But the weekend waiting for the results was miserable.
"I can't eat, I can't sleep, my right side — I've never had pain like this in my life," Raney said. "And you have to understand by now, most folks aren't listening to me. Most folks think I'm crazy. Most folks think I'm a hypochondriac. And even my wife is kind of sick of it."
"I'm not putting anybody down," Raney continued. "I'm just saying this is probably how a lot of people get misdiagnosed or just don't wanna say anything about what's wrong with them, because after a while, you start thinking you're crazy."
Doctors thought Raney had stage 3 colorectal cancer at first
The next week, Raney got out of bed, fell on the floor, hit her head, and defecated blood again. She and Lara packed a bag and went to Harris Health Houston, a level 1 trauma hospital.
There, she was diagnosed with stage-3 colorectal cancer. Doctors had found a baseball-sized tumor in her colon that looked like it had broken through her abdominal wall.
"Well, I'm going to die," Raney said she thought.
Doctors decided to operate as soon as possible, rather than delivering chemotherapy to shrink the tumor first.
The surgery — three days after her 45th birthday — involved removing the tumor, along with 34 lymph nodes and 23 centimeters of Raney's colon. The tumor had not, in fact, broken through her abdominal wall or spread to her lungs or lymphatic system, doctors found, meaning it hadn't progressed beyond stage 1.
Still, had Raney been screened for cancer at some point in the years prior, she said, "something different could have possibly happened. That just wasn't my story."
Rates of colorectal cancer are rising in young people
Colorectal cancer is the no. 2 killer of all cancers in the US, and disproportionately affects people of color. Black Americans are about 20% more likely to get the disease and about 40% more likely to die from it than most other groups, according to the American Cancer Society.
In the past three decades, rates of colorectal cancer have been rising in people under 50. Younger people are more often diagnosed with hard-to-treat, advanced forms of the disease, Insider previously reported. Actor Chadwick Boseman died from the disease ate age 43, four years after a stage 3 diagnosis.
Bowel cancers can be difficult to diagnose because the symptoms — such as abdominal pain, constipation, diarrhea, weight loss, and fatigue — are common with ailments like hemorrhoids, inflammatory bowel disease, or irritable bowel syndrome. What's more, routine testing isn't offered to many people under 50 in several countries, including the US.
If caught early, colon cancer is very treatable, and the five-year relative survival rate is about 90% if the cancer doesn't spread, according to the American Cancer Society.
That's why Raney is speaking up — not just to the media, but also recently on Capitol Hill with Fight CRC. "We really have to ask the people who make our food and our politicians: What's in our food and our air and our water? What's making this disease more prevalent in younger people?"
Raney says her race and sexuality affected her care
Throughout her experience in the medical system, Raney said she dismissed due to her race and sexuality.
"I had one person tell me, 'Oh you people always complain, you're fine,'" she said. Another doctor refused to treat her since she was openly gay. "You're going to hell," he told her, she said. Another dismissed her, saying, "We don't give opioids in this emergency room," she said.
Even after her diagnosis and surgery, Raney's background proved to be a barrier since didn't know her family history, which would inform her follow-up care.
"A lot of gay people, a lot of us get kicked out when we're young, and we do the best with what we have," said Raney, who left her home at age 16. "When we leave, we're not worried about family history."
She's since used 23andMe and learned that she had a history of gastrointestinal and colorectal cancers on her biological father's side. In fact, she said, her father and his five brothers all died from gastrointestional cancers, and her step-brother is currently living with colorectal cancer.
To stay healthy, she visits her GI doc regularly, eats healthy, and exercises. She encourages young people be aware of the signs of colorectal cancer, and take advantage of the increasing number of screening options she didn't have seven years ago.
"I wish I'd had the voice to say, 'Can I see another doctor? Is there some other test you can do?' I didn't think I had the authority. I had no money, I had didn't have insurance. I didn't know that I probably had some options," Raney said.
"I just try to remember all that pain and all that we went through," she added, "and I try to take that pain and turn it into action."