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Our colon cancers were dismissed as 'anxiety' and 'allergies' - the delayed diagnoses mean we'll die from the disease
Young women whose symptoms were dismissed as allergies and anxiety were diagnosed with terminal colon cancer, after months of pleading with doctors.
Raquel Aguilar, 33, of California, suffered severe diarrhea off and on for three years that included blood in her stool. Yet doctors referred her to a psychologist instead of ordering additional tests.
It would take a trip to the three years later for severe abdominal pain for her to be diagnosed with inoperable stage four colon cancer, which is effectively a death sentence.
And some women are considered 'anxious' from having almost no symptoms at all. Amy Lentz of Washington state noticed that her stool was slightly looser than normal. She had to wait a year and a half for a colonoscopy, which confirmed terminal colon cancer.
As colon cancer cases surge in young Americans, DailyMail.com has heard from dozens of patients with a similar story: doctors overlooked their symptoms because they were 'too young,' including women dubbed 'melodramatic.'
Now, their disease is so advanced that it's too late to cure it.
Raquel Aguilar, 33, from California, suffere diarrhea off and on before she was diagnosed with stage four colon cancer
And oncologists told DailyMail.com that a combination of vague symptoms and lack of screening for young patients could by why more young people, especially women, are being dismissed and left with cancer too aggressive to treat.
Dr Daniel Landau, oncologist, hematologist and contributor for The Mesothelioma Center at Asbestos.com, told DailyMail.com: 'Unfortunately, colon cancer often develops without many signs or symptoms. If there are symptoms, traditionally, they are vague.'
In addition to tell-tale signs like blood in the stool, these vague symptoms may include eating less than normal, feeling full easily, and excessive burping.
These symptoms can commonly go along with irritable bowel syndrome, food intolerance, or gas pains,' Dr Landau said.
'As these issues are far more common than colon cancer at young ages, many physicians will simply not think about them as a sign of colon cancer.'
'However, failure to think about it means failure to diagnose it.'
Dr Misagh Karimi, a medical oncologist at City of Hope Cancer Center in California, told DailyMail.com: 'Cancers are often found later in young adults than in other age groups.
'Sometimes this can complicate treatment if the cancer has grown large or has spread by the time it’s found.'
Figures from the National Cancer Institute show that one in four colon cancer cases are diagnosed in stages three and four. However, recent research suggests that young patients are 60 percent more likely to be diagnosed with late-stage colorectal cancer than older patients.
And the disease can become inoperable when it begins spreading to vital organs like the lungs and brain.
The NCI esimates that just 16 percent of patients with stage four colon cancer survive after five years.
Ms Aguilar's cancer had spread to her ovaries, liver, lungs, and her abdominal lining. Her doctors have deemed it inoperable
Ms Aguilar's doctors believe she will have to remain on chemotherapy for the rest of her life, and it will eventually stop being effective
In 2019, Ms Aguilar's roommate noticed that she was going to the bathroom more often than normal.
'I was working in a restaurant, and I figured I was eating too much of the food at work or eating too many processed foods,' she told The Patient Story.
Shortly after, she added more protein to her diet and started taking fiber supplements to ease her digestive distress.
Ms Aguilar remained symptom free for three years, though the digestive issues came back in 2022. Raquel was no longer working in a restaurant, but her coworkers asked why she was taking so many bathroom breaks.
But it wasn't until she started getting full quickly after eating and noticed blood in her stool that she became concerned.
However, her primary care doctor scheduled her a psychiatric appointment instead of follow-up testing. 'She thought I just had anxiety,' Ms Aguilar said. 'I'm sure she's not the only doctor who has 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, which had spread to her ovaries, liver, lungs, and her abdominal lining.
'I know they were classic colorectal cancer, but because I'm so young, I'm a woman, I'm a minority, statistically speaking to just have one of those categories is going to make you more likely to be dismissed,' she said.
'Right now they're telling me that they don't even want to do surgery just because of how incredibly advanced my cancer is. They're saying it might not be worth it,' she said.
Instead, her doctors have her on a chemotherapy regimen, which they suspect she will have to remain on for life. And even then, they believe the chemo will eventually stop working due to how aggressive her cancer is.
In late 2019, Ms Lentz noticed a 'very small change' in her bowel movements.
Amy Lentz was 39 when she was diagnosed with stage four colon cancer. It was originally dismissed as a food allergy, and she waited a year and a half for a colonoscopy
Ms Lentz is on an immunotherapy trial, but it's unclear what her treatment will look like after
'It became slightly looser. For most people, it isn't that big of a deal, but I hadn't changed my diet,' Ms Lentz told The Patient Story.
She had just returned from a vacation in Spain, so she first attributed the digestive issues to travel. But after a few weeks, the symptoms did not resolve.
Doctors weren't concerned at first, assuming the bowel change was due to a food sensitivity and testing her for allergies and celiac disease. 'I wasn't considered urgent. No one considered cancer,' she said.
Ms Lentz wouldn't go in for her colonoscopy until February 2021, where doctors immediately shouted, 'Get her husband in here now!'
'I felt my heart dropping in my stomach,' she said.
Doctors found a six-centimeter mass in her colon, roughly the size of an egg. Ms Lentz was diagnosed with stage four colon cancer, which had spread to 11 of her lymph nodes.
Though six months of chemotherapy shrunk 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. Stuff isn't getting better, but it's not chemo. I feel like I've gotten my life back with this immunotherapy,' she said. 'I'm not sick and tired all the time. I feel like I'm able to have a little bit more of a normal life. It's really been fantastic.'
However, Ms Lentz's cancer is still growing, and her options are running thin. It's unclear what her treatment plan will look like after the trial.
She is now advocating for earlier screenings and seeking help as soon as patients notice something is wrong.
'A lot of people just sit and suffer in silence, and by the time it starts rearing its big ugly symptoms, then it's often already in advanced stages,' she said.
'As we are seeing a shift toward younger people developing cancers, the mantra may need to shift toward more aggressive evaluations of vague symptomatology,' Dr Landau said.
However, he acknowledged that setting up a colonoscopy can be time-consuming, as it involves consultations and prep time.
'This creates a strain on patients and physicians alike and may make one more apt to believing symptoms are a result of something more simple, like irritable bowel syndrome,' he said.
Dr Landau noted that newer screening methods like at-home stool tests and blood tests could help detect these cancers earlier, though more research is still needed.
'With trends showing the younger population of patients developing cancer and seeing easier testing on the horizon, hopefully this trend of missed cancers will improve,' he said.