The Hidden Cost of Cancer Misdiagnosis

Cancer misdiagnosis can lead to serious harm. It may delay treatment, lower the chance of survival or limit your care options. For some, it becomes a life-or-death situation.

In our exclusive 2025 survey, The Mesothelioma Center at Asbestos.com surveyed and spoke with 50 cancer survivors across the United States who were misdiagnosed. Among the people who shared their experiences with us, 92% said the misdiagnosis hurt their health. About 64% had their treatment delayed, and 56% said their cancer advanced to a later stage.

Each year, a misdiagnosed disease kills or disables about 795,000 people in the U.S., according to the health care journal BMJ Quality & Safety. Cancer plays a role in many of those misdiagnoses.

A National Coalition for Cancer Survivorship survey found more than 1 in 10 people with cancer were first misdiagnosed. People ages 18 to 39 were more than twice as likely to face an incorrect diagnosis. Those in underserved communities often wait longer and see more doctors before learning what’s wrong.

If you think something isn’t right with your health, speak up. Ask questions. A second opinion could make all the difference.

Who Is Most Affected by a Cancer Misdiagnosis?

Some people face a higher risk of cancer misdiagnosis because of where they live, how much money they make or their background. Race, age, education, sexual orientation and country of origin can also affect how soon someone gets the right diagnosis. 

Barriers like poor insurance coverage, long travel times, bias in care and lower health literacy raise the risk of delays and mistakes in diagnoses.

Demographic Results of The Mesothelioma Center’s Misdiagnosis Survey

• 70% of respondents who were misdiagnosed were white men. And 20% of misdiagnosed respondents were Black. Historically, misdiagnoses among Blacks lead to delayed treatments, poorer outcomes, higher death rates and the shortest survival of any racial or ethnic group for most cancers in the United States.
• 56% of all misdiagnosed respondents were men. About 44% were women.
• Respondents between the ages of 25 and 54 received the most misdiagnoses.

About 57 million people, 17% of the U.S. population, live in rural areas, where health care is harder to reach and specialists are limited.

Why Is Cancer Misdiagnosed?

A leading cause of cancer misdiagnosis is how difficult it is to recognize early signs. With many cancers, symptoms are often similar to common illnesses such as a cold or the flu. In some cases, people may not see a doctor because they don’t have insurance or regular access to health care. 

When symptoms get worse and people do see a doctor, they may not always have experience with some types of cancers, especially rare diseases as a possibility. All of these factors can play a role in cancers like mesothelioma, which is so rare that fewer than 3,000 people are diagnosed in the U.S. each year. 

In fact, of the people we spoke with in our survey, only 2 respondents who were initially misdiagnosed with another condition had mesothelioma, or 4% of all respondents.

Factors That Can Contribute to Cancer Misdiagnosis

1. Not enough time during appointments for people to fully explain symptoms and their medical histories
2. Symptoms that seem mild or mimic more common illnesses
3. Missing the need for more detailed tests when symptoms seem minor or routine
4. Delays in seeing a cancer specialist
5. Misreading or misunderstanding test results

Even with testing, early signs of cancers such as mesothelioma can be hard to detect. Some imaging tests, like chest X-rays, may not show tumors clearly but might reveal an abnormal area. More detailed scans, like CT scans, can then help doctors better understand what’s going on.

One way to lower the risk of misdiagnosis is to involve the right specialists early. For example, pathologists, who study tissue samples, or cytopathologists, who look closely at cells under a microscope, have special training to find rare cancers. They often work with surgeons and radiologists to confirm a diagnosis. Using more advanced imaging tools and getting a second opinion can also identify cancer earlier and avoid delays in treatment.

The Misdiagnosis Journey

Tamron Little

Tamron Little was diagnosed with peritoneal mesothelioma at the age of 21 while pregnant with her first child. It all started with abdominal pain, extreme fatigue and nausea. During an ultrasound, she was told she had a fibroid tumor. 

Her doctors said fibroid tumors are normal in Black women and they would eventually disappear. She was prescribed birth control to try and shrink the tumor, but it didn’t work.

Tamron tells us, “Imagine being told whatever is ‘wrong’ with you is minor to then being diagnosed with a rare cancer you’ve never heard of. It takes a toll on your mental health and introduces fear of the future. It causes doubt, anxiety and medical mistrust.”

Ashley Vassallo

It was an entire year from when a doctor misdiagnosed Ashley Vassallo with anxiety until she was diagnosed with lung cancer. During that year, she had more than 20 doctor visits at which she was also misdiagnosed with pneumonia twice, long COVID-19, gerd and asthma. 

Before her diagnosis at 34-years-old, Ashley was very active, running marathons and lifting weights. Her symptoms started out mild with slight changes in her breathing and feeling uncomfortable while lying on her back. 

Finally, she went to the ER and refused to be discharged without answers. Tests found a blood clot and a pulmonary embolism. She was given a CT scan before being diagnosed with stage 4 lung cancer in 2021. 

Ashley tells us the negative effects from unnecessary treatments got in the way of her day-to-day life.  She says, “I wasn’t really able to go out and do things. I was so fatigued and tired. When I should have been working. I was taking naps. It affected every area of my life. It was hard to exist.”

Kasie Coleman

Mesothelioma survivor Kasie Coleman was given several misdiagnoses for more than a year. Her journey began with pain on her right side that slowly, progressively became unbearable. Doctors told her she had a bruised rib, kidney stones, a hernia and even chlamydia before she was finally diagnosed with peritoneal mesothelioma in 2010.

Her diagnosis wasn’t confirmed until undergoing hernia surgery. That’s when her cancer was finally spotted. Kasie underwent 2 procedures to remove cancerous tissue. The procedure, heated intraperitoneal chemotherapy, known as HIPEC, involves surgery and then a chemo wash of the belly to kill any cancer left. But her mesothelioma returned. She then received rounds of chemo, which finally put her in remission. 

Kasie shares, “July 1, 2010 – I’ll never forget it. I went in because I had a hernia removed. I was going in to have them remove the bandages. I was thinking that I’m going to come in and just get this bandage removed, and I’m out of here.” 

“Then my doctor says, ‘We’ve removed the hernia. However, underneath the hernia, we found a mass that was sent to Mayo Clinic, and it’s mesothelioma,’” Kasie recounts. “So it was like I heard him, but I didn’t. It was like an out-of-body experience. So I was totally taken aback to say the least.” 

How Delayed Misdiagnosis Can Affect Your Well-being

A delayed or incorrect diagnosis can delay treatment, allowing cancer to spread. This can make treating it more difficult when you get the right diagnosis. You may also undergo the wrong treatment, resulting in side effects, significant recovery time and long-term issues.

Medical visits, scans, tests and treatments that don’t address your cancer can lead to high costs even before you get the right diagnosis. Financial and physical stress can also take a toll on your mental health. Emotional stress, anxiety, and a loss of faith in health care can all be attributed to cancer misdiagnosis. 

National statistics paint a picture of a significant toll from misdiagnoses. The results from our exclusive survey found many people experienced emotional, financial and health impacts from their misdiagnosis.

Toll on Emotional and Mental Health

Struggling with prolonged symptoms and trying to figure out what’s going on with your health can make you feel emotionally and mentally hopeless. And once you’ve received a cancer diagnosis, you may understandably feel depression, anxiety or both. Finding a mental health professional with experience helping people with the trauma of living through a misdiagnosis and facing cancer can help.

Dana Nolan, a mental health counselor who specializes in helping people with cancer and leads The Mesothelioma Center’s survivor support group, tells us it’s common to also feel mistrust. She explains, “Once somebody with a cancer like mesothelioma begins treatment after being misdiagnosed or having their symptoms minimized, they may experience symptoms of anxiety or mistrust of their health care team – and even distrust their own body.”

“It’s common for mesothelioma patients who are initially misdiagnosed to question their test or scan results or be hypervigilant about physical symptoms they experience,” Dana tells us. “Being misdiagnosed can lead to symptoms of anxiety, including worrying, poor sleep, irritability and negative thinking about the future.”

Most of the people we surveyed told us they experienced a significant emotional impact from their misdiagnosis. As many as 82% of patients say they had increased stress and anxiety, 62% experienced depression and 56% said they lost their trust in medical professionals. 

Financial Burdens

According to a 2023 report from the Everylife Foundation for Rare Diseases, the economic strain per person in avoidable costs from a delayed diagnosis of a rare disease can reach as high as $517,000. The report noted on average, it takes more than 6 years and nearly 17 doctor visits, hospitalizations, and other health-related trips to receive a rare disease diagnosis after symptoms begin. 

This can add up significantly. One MRI can cost between $400 to $12,000, depending on the provider, location and health insurance. The average overnight stay in a hospital in the U.S. can be as much as $2,883. And the financial strain can be compounded with lost wages from missing work. 

Of the 50 people we surveyed and interviewed about their misdiagnoses, 44 respondents said they were hurt financially. About 42% of those spent between $5,000 and more than $10,000 on unnecessary treatments. 

More than 50% also struggled with insurance issues. 

Tamron shared, “If it wasn’t for the Medicaid insurance I had, I’m sure finances would have been a huge burden. I didn’t have a job, and my husband worked part-time, so the little money we did have went to life essentials. It did lessen the burden, sort of one less thing to worry about when I was fighting to live.” 

Physical Impact

Living with an undiagnosed cancer can take a serious physical toll on your body. Ongoing symptoms may worsen, new ones may appear, and your overall health can decline. Some people become weaker, lose weight, or develop other health problems before getting the correct diagnosis. It can also become harder to keep up with daily tasks, work or routines. Treatments that aren’t right for your condition can strain your body without offering real benefit.

Physical Effects of Cancer Misdiagnosis

• Damage to the body from unnecessary treatments like chemo, radiation or surgery
• Increased pain
• Organ damage
• Side effects from unnecessary treatments
• Tumor progression
• Weakened immune system from unnecessary treatments

According to a Queen’s University study, even a 4-week delay in cancer treatment can raise the risk of death. For surgery, each 4-week delay can raise the risk by 6% to 8%. Some treatments have even higher risks, like a 13% increase for delayed chemo after colon cancer surgery. For breast cancer, delays in radiation of more than 20 weeks have been linked to worse survival.

Addressing the Misdiagnosis Problem

The key to addressing misdiagnosis is advocating for yourself during doctor visits and not hesitating to get a second opinion. Ask questions, request clarifications, push for more tests and speak up. 

Few patients seek second opinions on their diagnoses. A Yale Medicine study found only 21% of patients sought out a second opinion after receiving a new diagnosis. 

Thoracic Surgeon Dr. Jeffrey Velotta, of Kaiser Permanente Oakland Medical Center in California, who is also a regular contributor at The Mesothelioma Center, says his professional experience aligns with these findings. He tells us, “I would say less than 20% of people come in looking for a second opinion. A second opinion is everything. Especially in unique and rare cases, you need more than a second opinion.” 

Dr. Velotta, who treated lung cancer survivor Ashley Vassallo, noted Ashley’s journey demonstrates that sometimes multiple opinions are necessary. But, he says, continuing to advocate for herself “was the only way she was able to get treatment she needed. She had stage 4 lung cancer, but she’s still alive 3 years later because she’s gotten multiple opinions.”

The Role of Advocacy Organizations

“When I was misdiagnosed and finally found out my real diagnosis, advocacy organizations gave me the reassurance I wasn’t alone. They equipped me with the tools necessary to advocate on many levels. I knew I had a unique story and that it was important for my voice to be heard.” — Tamron Little, peritoneal mesothelioma survivor

Advocacy groups raise awareness among the public and health care workers about the risks of misdiagnosis and importance of second opinions. They also work with doctors and medical groups to improve testing and screening methods.

These groups also push for changes in health care rules, so insurance covers more tests. Some groups pay for research on new tools like AI-assisted pathology and genetic testing. If someone gets misdiagnosed, these groups can help them find support.

What to Do if You Suspect a Cancer Misdiagnosis

If you suspect you’ve been misdiagnosed, seek a second opinion. A cancer specialist can help ensure your diagnosis is accurate. Most doctors never treat rare cancers like mesothelioma, so even good care can miss the right answer at first. Getting input from someone who knows what to look for can help you avoid delays and feel more confident in your care.

Danielle DiPietro is a Patient Advocate with The Mesothelioma Center. She says when it comes to mesothelioma, “Seeking out an opinion from an expert at a center of excellence for diagnostic and treatment purposes is imperative for the best prognosis.”

Steps to Take if You Suspect Misdiagnosis

1. Get a second opinion
2. Request a reevaluation of tests
3. Gather medical records
4. Consult a specialist
5. Consider a cancer center of excellence

Remember to be mindful of your mental health if you’re dealing with a cancer misdiagnosis. Advocating for yourself can not only help minimize your potential for cancer misdiagnosis, but it can also help you feel empowered. Taking charge of your health care can feel daunting, but it can also help you find the answers you need and hope for a positive outlook.

Stories of Hope

Tamron Little

After finally getting the correct diagnosis, Tamron tells us she set up an appointment with renowned mesothelioma specialist Dr. Edward Levine at Wake Forest Baptist Medical Center. During her first visit with Dr. Levine, she had a conversation that changed everything for her.

“That first appointment was a hopeful one indeed,” Tamron shares with us. “I got the confident reassurance that, yes, I had a rare cancer. But there was hope. And I was in the position to receive a groundbreaking treatment that would give me the quality of life I’d been praying for.”

Tamron believes everyone should speak up for themselves, especially when dealing with a misdiagnosis. Her experience taught her to stay brave and to keep learning about her health and well-being.

“One thing I would tell others concerning a cancer misdiagnosis is don’t hesitate to get a second, third or fourth opinion,” Tamron advises. “Don’t stop advocating for yourself, ask questions, and keep going until you find the right answers.” 

Ashley Vassallo

Doctors removed one of Ashley’s lungs in 2023. She shares with us, “If I was diagnosed at an earlier stage, then maybe I would have had a partial lung removal instead of going through a full lung removal, chemo, radiation and immunotherapy.” 

She says, “There were a lot of physical and emotional effects of not really being able to live my life.” But because Ashley continued to push for other opinions, she got the answers and expert care she needed. 

Ashley wants everyone to know the importance of getting a second opinion. She adds that, depending on your situation, you might even need a third or fourth opinion. “If you know something is wrong with your body and your primary physician is telling you that there isn’t, I highly recommend having that be notated in the chart.”

“Find a physician who listens to you and is curious about your condition. Someone who is as curious as you are to find a solution.”

Kasie Coleman

Mesothelioma survivor Kasie Coleman also believes in speaking up for yourself. She says staying strong and pushing for answers helped save her life.

“I really had to advocate for it and keep being persistent. I had to keep going back,” Kasie shares. “Even after I received my HIPEC treatments, they said there’s nothing else they can do.” 

Kasie adds, “You just have to keep going. I tell people all the time, your prognosis is only as good as the last oncologist who diagnosed you.” 

Survey Methodology

As the nation’s most trusted mesothelioma resource, half of the people diagnosed with mesothelioma in the United States come to The Mesothelioma Center for help. We have served those affected by asbestos exposure for nearly two decades and continue to contribute new statistics for mesothelioma research.

The 2025 Misdiagnosis Survey

• We surveyed and interviewed 50 people who were misdiagnosed with conditions other than their actual diagnoses.
• The survey included 20 questions that ran from March 10 thru May 8.

Respondents diagnoses included cancers of the breast, skin, prostate, pancreas, lung as well as colorectal cancer, lymphoma, mesothelioma, leukemia and other malignancies.