- Amanda Lee said a doctor told her it was a "blessing" she couldn't eat much and had lost weight.
- But Lee, 28, turned out to have advanced colon cancer, which is on the rise in young people.
- Knowing how to advocate for yourself is key to fighting age, gender, and weight-based stigmas.
- Visit Insider's homepage for more stories.
For months, Amanda Lee endured stomach pain and digestive distress so severe she sometimes struggled to eat the blandest foods like apple puree. She'd lost 35 pounds by the time she was able to meet with a gastroenterologist.
But the doctor wasn't alarmed. Rather, he was encouraged to see Lee losing weight, the 28-year-old actress and wedding photographer told Today Health.
"He said, 'Maybe it's not such a bad thing' that I couldn't eat because of my pain," she said. "He was praising the fact that I was not eating."
Lee said the doctor also told her her minimalist diet could be "blessing" and that she didn't "look malnourished." He didn't run any tests and sent her home with a prescription for a UTI, which her pharmacist later questioned.
After her appointment, Lee broke down telling the story on TikTok.
Then, she said, she went back in and asked for an apology, which she got - as well as the recommendation to find another provider. When Lee did, she received a colonoscopy and was soon diagnosed with stage 3A colon cancer, meaning it had spread to her lymph nodes.
She's now undergoing chemo and is using her TikTok platform to document her journey and encourage other patients to advocate for themselves. She recommends writing down your symptoms, handing the document to clinicians, and requesting it goes in your file. She also said it helps to practice the conversation ahead of time, remember you can find another doctor, and know you're not alone.
"Remember this is your body," she said in one video, "and they can't gaslight you."
Younger people tend to be diagnosed with more advanced forms of the disease
In the past three decades, research has consistently found rising rates of colon cancer and related illnesses like rectal cancer among younger people.
People older than 50 are still at a greater risk of developing colon cancer overall. However, people under 50 are more often diagnosed with hard-to-treat, advanced forms of the disease. Last year, Chadwick Boseman, the actor best known as the star of "Black Panther," died of complications related to the disease at age 43.
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.
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, and irritable bowel syndrome. What's more, routine testing isn't offered to many people under 50 in many countries, including the US.
Weight stigma is pervasive in medicine and contributes to poorer outcomes
And, as Lee experienced, doctors can dismiss patients due to their age or weight. Race and gender identity can hinder appropriate care, too.
Insider has talked to a 27-year-old white woman who had a life-threatening stroke but was almost sent home because doctors just thought she was hungover. Another woman, a Black nurse, told Insider about a serious tear in her artery that was dismissed as a migraine.
Dr. Suzanne Steinbaum, an American Heart Association Go Red for Women volunteer medical expert and cardiologist in New York City, previously told Insider it's critical for women to advocate for themselves within the healthcare system.
"So many times I hear, 'I was listening to the doctor. Maybe they're right,'" she said. "No one knows our bodies as well as we do. Nobody is living in our bodies. We know when we're not OK."
Have you been dismissed by the healthcare system due to your weight, race, gender, sexuality, or another part of your identity? Email [email protected] to share your story.