Our colon cancers were dismissed as ‘fear’ and ‘allergies’ – late diagnosis means we will die from the disease
Young women, whose symptoms were dismissed as allergies and anxiety, were diagnosed with terminal colon cancer after months of begging doctors.
Raquel Aguilar, 33, of California, had been experiencing severe diarrhea with blood in her stool on and off for three years, but doctors referred her to a psychologist instead of prescribing additional tests.
It wasn’t until three years later, when she was experiencing severe abdominal pain, that she was diagnosed with inoperable stage four colon cancer, effectively a death sentence.
And some women are considered “anxious” because they have almost no symptoms. Amy Lentz of Washington state noticed her stools were a little looser than normal. She had to wait a year and a half for a colonoscopy, which confirmed terminal colon cancer.
As colon cancer cases rise among young Americans, DailyMail.com has heard from dozens of patients with a similar story: doctors ignored their symptoms because they were “too young,” including women who were called “melodramatic.”
Now their disease has progressed so far that it is too late to cure.
Raquel Aguilar, 33, from California, suffered from occasional diarrhea before she was diagnosed with stage four colon cancer
Oncologists told DailyMail.com that a combination of vague symptoms and a lack of screening in young patients could be the reason why more young people, especially women, are being rejected and left with cancers that are too aggressive to treat.
Dr. Daniel Landau, oncologist, hematologist and associate of The Mesothelioma Center at Asbest.comtold DailyMail.com: ‘Unfortunately, bowel cancer often develops without many signs or symptoms. When there are symptoms, they are traditionally vague.’
In addition to obvious signs such as blood in the stool, these vague symptoms can also include eating less than normal, feeling full quickly and burping a lot.
“These symptoms can often be associated with irritable bowel syndrome, food intolerance or gas,” says Dr. Landau.
‘Because these problems are much more common than colon cancer at a young age, many doctors simply don’t consider them a sign of colon cancer.’
“But if you don’t think about it, you can’t diagnose it.”
Dr Misagh Karimi, a medical oncologist at the City of Hope Cancer Center in California, told DailyMail.com: ‘Cancer is often detected later in young adults than in other age groups.
‘Sometimes this can complicate treatment, for example if the cancer is already large or has spread by the time it is discovered.’
Figures from the National Cancer Institute show that one in four cases of colorectal cancer is diagnosed at stages three and four. However, recent research suggests that younger patients are 60 percent more likely to be diagnosed with late-stage colorectal cancer than older patients.
And the disease can become incurable if it spreads to major organs such as the lungs and brain.
The NCI estimates that only 16 percent of patients with stage four colon cancer are alive after five years.
Ms. Aguilar’s cancer had spread to her ovaries, liver, lungs and abdominal wall. Her doctors declared it inoperable
Ms. Aguilar’s doctors believe she will need to continue chemotherapy for the rest of her life and that it will eventually become ineffective.
In 2019, Ms. Aguilar’s roommate noticed that she was going to the bathroom more often than normal.
“I worked in a restaurant and I thought I was eating too much of the food at work or eating too much processed food,” she said The patient’s story.
Shortly after, she added more protein to her diet and began taking fiber supplements to help ease her digestive issues.
Ms. Aguilar remained symptom-free for three years, although the digestive problems returned in 2022. Raquel no longer worked in a restaurant, but her coworkers wondered why she was going to the bathroom so often.
But it wasn’t until she started feeling full quickly after eating and noticed blood in her stool that she started to worry.
However, her family doctor scheduled a psychiatric appointment instead of a follow-up. “She thought I was just having anxiety,” Ms. Aguilar said. “I’m sure she’s not the only doctor who’s done that.”
Three weeks later, she rushed to the emergency room with severe abdominal and lower back pain. MRI and CT scans revealed stage four colon cancer that had spread to her ovaries, liver, lungs and abdominal wall.
“I know it was classic colorectal cancer, but being so young, being a woman and being a minority, statistically you’re more likely to be denied if you fall into even one of those categories,” she said.
“Right now they’re telling me they don’t want to do surgery at all, just because of how incredibly advanced my cancer is. They’re saying it might not be worth it,” she said.
Instead, her doctors put her on a chemotherapy regimen that they expect she will have to continue for the rest of her life. And even then, they believe the chemo will eventually stop working due to the aggressive nature of her cancer.
In late 2019, Ms. Lentz noticed a “very slight change” in her bowel movements.
Amy Lentz was 39 when she was diagnosed with stage four colon cancer. It was initially dismissed as a food allergy and she waited a year and a half for a colonoscopy
Ms. Lentz is participating in an immunotherapy trial, but it is unclear what her treatment will look like afterward
“It loosened up a little bit. For most people it’s not a big deal, but I hadn’t changed my diet,” Ms. Lentz told The Patient Story.
She had just returned from a holiday in Spain, so she initially attributed the digestive problems to travelling. But after a few weeks, the symptoms did not go away.
Doctors weren’t initially concerned, assuming the change in her bowels was due to a food sensitivity and tested her for allergies and celiac disease. “I wasn’t considered urgent. No one thought about cancer,” she said.
Mrs. Lentz did not have a colonoscopy until February 2021. The doctors immediately shouted, “Get her husband in here now!”
“I felt my heart drop into my stomach,” she said.
Doctors found a six-centimeter mass in her colon, about the size of an egg. Ms. Lentz was diagnosed with stage four colon cancer that had spread to 11 of her lymph nodes.
Although six months of chemotherapy shrank the tumors, her cancer returned last summer. Ms. Lentz is now enrolled in a clinical immunotherapy trial, which she calls “night and day” compared to chemo.
“The trial has been amazing. It doesn’t get better, but it’s not chemo. I feel like I’ve got my life back with this immunotherapy,” she said. “I’m not sick and tired all the time. I feel like I can live a little bit more of a normal life. It’s really amazing.”
However, Ms. Lentz’s cancer is still growing and she is running out of options. It is unclear what her treatment plan will look like after the trial.
She now advocates screening patients earlier and seeking help as soon as they notice something is wrong.
“A lot of people just suffer in silence, and by the time the big, ugly symptoms show up, the disease is often already quite advanced,” she said.
“As we see more and more younger people getting cancer, we may need to move to more aggressive evaluations of vague symptomatology,” Dr. Landau said.
However, he acknowledged that scheduling a colonoscopy can be time-consuming, as it requires a lot of consultation and preparation time.
“This puts pressure on both patients and doctors and can lead to people being more likely to think that the symptoms are due to something simpler, such as irritable bowel syndrome,” he said.
Dr. Landau noted that newer screening methods, such as stool tests and home blood tests, may help detect these cancers earlier. However, more research is needed.
“Given trends showing that cancer is becoming more common in younger patients and the expectation that testing will become easier in the future, hopefully the trend of cancer not being detected will improve,” he said.