Doctors mistook my rare cancer for ANOREXIA: Young women share horror stories about being misdiagnosed

Women are taking to social media to share how their rare cancers were dismissed as exaggerations or misdiagnosed as anxiety, letting the disease progress without treatment until it was too late for a cure. 

A 14-year-old who lost more than 50 pounds in just a few months and would pass out from coughing said doctors blamed her symptoms on eating disorders like anorexia and bulimia.  

Another young woman with a rare bone cancer claims she had tests results kept from her for months, with the oncologist telling her to 'just Google' her diagnosis.

Meanwhile, an adrenal cancer patient says her symptoms were dismissed for four years before scans finally revealed a cantaloupe-sized tumor in her abdomen. 

Research has long suggested women are more likely than men to have their health concerns blown off, with doctors assuming they are overreacting.

And the subject is particularly relevant given the surge of cancer cases in young Americans.

Bella Johnston, 27, was initially told by doctors that her signs of rare throat cancer were an eating disorder like anorexia or bulimia and by the time she finally got the right diagnosis, she 'looked like death'

The above graph shows the change in cancer case rates around the world

For people under 40 years old in the US, cancer cases have surged 35 percent over the last four decades. 

Bella Johnston of Australia was just 14 years old when she rapidly started losing weight. In just a few months, she had lost 55 pounds and suffered fatigue, dizziness, and a persistent cough that, at times, made her lose her breath and pass out. 

However, doctors insisted she must have been suffering from an eating disorder like anorexia or bulimia. 

'As soon as that was written down, nobody believed me about anything... I was never offered a scan, a CT scan, an MRI or anything,' Ms Johnston, a now 27-year-old influencer, told Mamamia.

It would be another five years of worsening symptoms and dismissals from doctors before Ms Johnston would finally be diagnosed with paraganglioma, a cancer that affects the neuroendocrine network, a series of nerves and gland cells that control the body's hormones.

Paraganglioma can develop is multiple parts of the body, but tumors usually form around major vessels. 

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It is among the most puzzling medical mysteries of the moment: why are so many young, otherwise healthy people being diagnosed with cancer? 

The National Cancer Institute (NCI) estimates that paraganglioma effects just two out of every million people, with approximately 500 to 1,600 new cases in the US each year. 

The five-year survival rate is about 95 percent, but if the cancer is late-stage, that declines to between 34 and 60 percent. 

Ms Johnston noted that it was only by chance that she got the diagnosis when she did. 

'I burned myself quite badly one day and I went to the doctor and he looked at me and he was like "What is wrong with you?" I looked like death,' she said.

She weighed less than 100 pounds, and her blood pressure was so low she could barely stand.

Doctors performed surgery, opening up her neck nearly from ear to ear, saying that 'the inside me was like a rotten fruit.' 

'From about 2009 to 2014, I was a little girl in Australia dying from cancer, but all the doctors were telling me it was an eating disorder,' she said in a November TikTok, which amassed 165,000 views. 

In another TikTok posted in February, Ms Johnston detailed all of her misdiagnoses. 

Her weight loss was diagnosed as anorexia, vomiting as bulimia, and the tumor pressing against her windpipe was asthma. 

She was also told her symptoms were all in her head. 

During the surgery, doctors cut into Ms Johnston's vagus nerve - the longest nerve in the human body that extends from the brainstem to the abdomen - leaving her left arm temporarily paralyzed. 

She now only has half of her esophagus, half of her tongue, and has lost the hearing in her right ear, though she can generally eat normally. 

'I felt like I was horribly disfigured,' she said. 

The US has seen an explosion of mystery cancers in people under 50, which is most pronounced in colorectal cancers. But experts are still working to unravel the causes.

However, research suggests that women may fare worse due to being ignored or misdiagnosed more often than men. 

A recent survey from the American Cancer Society found women were twice as likely to feel only 'somewhat' confident about the quality of their care than men. 

Additionally, women whose cancer was diagnosed after they experienced symptoms were more likely to report not being taken 'very seriously' or seriously at all. 

Natasha, a 27-year-old from California, started experiencing intense knee pain in the summer of 2019. She waited months to get the results back from scans, which could have led to her cancer worsening

Doctors now estimate Natasha has just a 15 percent chance to survive stage four synovial sarcoma, a rare and aggressive soft tissue cancer

One in 10 women surveyed said they felt their symptoms were ignored or dismissed or that they had to push for tests their providers did not want to order. And one in eight had to see multiple doctors before getting a diagnosis. 

One respondent wrote: 'My doctor did not believe me when I said I had pain in my breast. He put his hand on my knee and told me to smile when I became upset. It wasn’t until my new oncology team that I felt supported or heard.'

Lisa Lacasse, president of the ACS Cancer Action Network, said about the findings: 'In order to end cancer as we know it for everyone, we need to ensure everyone is treated equally.

'Providers need to consider and correct any possible gender bias in how they treat patients. To do otherwise risks needless suffering and delayed diagnosis which could result in avoidable death from this disease.'

Natasha, a 27-year-old from California, started experiencing intense knee pain in the summer of 2019. Then in her early twenties, she didn't think anything of it at first, as she had played basketball for years and suffered a series of knee injuries. 

An orthopedic surgeon sent her to physical therapy, though her knee gradually swelled and she could not it straighten out. 

'Basically I was just getting a fatter knee, and that was my symptom,' she said in a TikTok earlier this month. 

By November 2019, doctors suspected the growth was just a benign mass. They suggested a biopsy, but by that point, the pandemic had hit, and Natasha was told to just keep going to physical therapy. 

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'My last session with my physical therapist, they say, "Go back to your orthopedic surgeon, something's wrong. Physical therapy's not working,"' she said. 

She eventually was ordered to undergo an MRI scan of the knee. Despite the results coming back shortly after the test, Natasha's doctor did not inform her of them for months. 

When she did finally see the scans, they said toward the bottom: 'Should check for synovial sarcoma,' though no one had done so for months, she claims.

About a year after the pain started, a biopsy finally confirmed stage three synovial sarcoma. 

Synovial sarcoma is a rare and aggressive soft tissue cancer that tends to occur near large joints like the knee. 

It starts as a growth of cells that quickly multiplies and destroys healthy tissue and can occur almost anywhere in the body. 

Just 800 to 1,000 cases are reported every year, according to the NIH. 

Based on the extent of the cancer, the five-year survival rate ranges from 36 to 76 percent.  

The doctor did not explain the diagnosis and told Natasha to 'Google it,' she claims.

Natasha underwent five rounds of chemotherapy, followed by surgery in November 2020 and another two rounds of chemo in February 2021. 

Though she went into remission for several months, scans in September 2021 revealed cancer had spread to her chest, causing doctors to remove a 'chunk' of her lungs. 

The cancer was now stage four. 

Natasha underwent therapy that uses a protein called MAGE 4 to target cancer cells with immune-boosting white blood cells, but more tumors appeared in her lymph nodes in fall 2023. 

Another tumor pressed on her vena cava, the body's largest vein that carries blood from around the body to the heart, prompting 15 rounds of radiation. 

Now, Natasha has to receive supplemental oxygen due to pneumonitis, which she believes could have been caused by radiation, chemotherapy, or Covid.  

'Officially, I have a 15 percent chance of being alive for five years after being diagnosed with stage four. Me, however, I'm going to be different. I'm putting that out into the universe,' she said. 

'Even though I have this rare cancer, I still want to live my life. I take life year by year.'

Gracie Guardino, 30, spent six years searching for answers, with doctors blaming symptoms on her overreacting. It turned out to be stage four adrenal cancer

Despite grim odds, Ms Guardino remains optimistic. '[My doctor] asked me, "How far are you willing to go?"' she said. 'I said, "I will go f****** anywhere'

Gracie Guardino's symptoms started with constant fatigue, brain fog, and 'feeling like I was swallowing something all the time,' she said in a TikTok last year.

Ms Guardino sought out medical help for the symptoms, which started in 2017, but doctors told her she was overreacting. 

'No one would diagnose me with anything,' Ms Guardino, now 30, said. 'They kept telling me I was fine. I went on with these symptoms and no one could figure out what was going on.' 

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Two years later, she started suffering spontaneous fevers, which lasted anywhere from 12 hours to multiple days. Soon after, she had heart palpitations and mounting anxiety. 

Still, after a battery of tests, doctors could not find anything abnormal, though they refused to perform imaging tests like CT scans. 

At the end of 2021, a large nodule formed in her throat, and Ms Guardino begged doctors to test her thyroid levels. 

A biopsy on the nodule came back normal, but her blood tests painted a more grim picture. 

'The inflammation levels in my blood were five times the normal marker of what they should be,' she said. 

She was diagnosed with Hashimoto's disease, which causes cells in the thyroid gland to die, disrupting the production of hormones that regulate metabolism, growth, and development. 

Finally, in early 2023, six years after the symptoms started, doctors performed scans and found a 10-inch tumor in Ms Guardino's abdomen, which she said she could now 'feel' herself. 

'The biopsy came back with a one-in-a-million adrenocortical carcinoma,' she said. 

Adrenocortical carcinoma (ACC) forms in the adrenal glands, which sit on the top of the kidneys and manage metabolism, blood pressure, and the body's reaction to stress. 

NCI estimates it affects just 300 Americans a year.  

Ms Guardino's cancer was already stage four, giving her an approximately 38 percent five-year survival rate.

Her team gave her limited treatment options. 

'[The doctor] sat there and told me that I had 12 to 18 months to live as a 29-year-old woman,' she said. 

She did three rounds of intensive chemotherapy, followed by surgery. Ms Guardino is now in an immunotherapy trial, and her family is raising money for medical expenses.  

 However, she remains optimistic, despite doctors taking so long to find the cancer. '[My doctor] asked me, "How far are you willing to go?"

To which she said: 'I will go f****** anywhere.'