Doctors dismissed the small, red spot in my mouth… now I’ve lost nearly HALF of my tongue and can’t enjoy my favorite foods
Florida mom-of-four Rachel Passarella was a nurse practitioner who seemed to have it all.
But after a devastating breakup in September 2025, Passarella’s body was wrangled with stress. She was constantly fatigued – sleeping 12 to 14 hours a day – losing clumps of her hair, and then she found a red spot on her tongue.
Passarella, 42, believed the unassuming bump was a canker sore brought on from stress and her auto immune disease androgenic alopecia. But after three weeks the bump wasn’t getting better – it was only getting bigger and more painful.
For the next six months, the mom saw four different doctors, three of whom dismissed her symptoms even as the lesion worsened and she rapidly lost weight – nearly 20 pounds – because it was too painful to chew and eat.
Passarella knew something wasn’t right, and had repeatedly advocated for a biopsy of the lesion.
The mom was dismissed, with healthcare professionals telling her she ‘didn’t have the risk factors for cancer’ because she doesn’t smoke, drink, or consume much sugar.
‘I’ve heard that so many times during this journey that it is mind boggling,’ she told the Daily Mail.
After rounds of prescription steroids and medicated mouthwash, Passarella had enough. She returned to her previous doctor and demanded a biopsy. Even as the doctor sliced into her tongue, he repeatedly assured her it wasn’t cancer.
Rachel Passarella, a mom-of-four from Florida, was finally diagnosed with stage four tongue cancer after doctors repeatedly told her a red spot was nothing to worry about. She is pictured with her children
Passarella, who is a nurse, almost lost her life after the second surgery on her tongue
Two weeks later, Passarella received a phone call nobody wants: she had squamous cell carcinoma, stage four tongue cancer.
‘I sat there not fearful, not afraid, not scared. I sat there with this idea in my head that this is not your demise. This is your testimony,’ she told the Daily Mail.
‘I don’t know why, but the first thought in my head was, how can I take this information and help others? Because nobody deserves to go through what I just went through to get a diagnosis.’
Passarella’s illness has affected her life in ways most people can hardly imagine. After undergoing partial glossectomies and neck dissections that removed about 39 percent of her tongue and roughly 70 lymph nodes from her neck, she now struggles with everyday tasks such as chewing and tasting her favorite foods.
‘I had to do speech therapy. I’m doing well with that. But the swallowing, there are a lot of things I can’t eat any longer because it gets stuck under the hole on the right side of my tongue,’ she explained.
The mom-of-four can no longer eat crunchy or chewy foods like chips and bread. She also has to be careful when drinking to avoid choking, and her sense of taste has changed – foods she once loved now taste faint and muted.
‘Because of the nerve damage I have in the side of my face and in my neck, I can’t open my mouth wide enough to even enjoy a cheeseburger.
‘My sister was laughing at me because she’s like, Rachel, you’ll never be able to eat an ice cream cone again. And it’s true. I’ll never be able to lick an ice cream cone.
Passarella underwent a neck dissection that removed 70 lymph nodes from her neck to test for cancer
The red spot that appeared on her tongue, she assumed it was a canker sore
‘I would have to stick the ice cream cone on the side of my face because my tongue goes all the way to the right now. It doesn’t stick out straight any longer. So I can’t do that,’ she said.
‘After tongue cancer, you get a lot of mucus in your mouth. So as you’re talking, you have to be careful that you’re not like spitting or you’re not drooling down your chin.’
She is focused on healing rather than dating, but said the thought of intimacy or even kissing someone makes her anxious.
‘I would imagine when I go back to dating, I won’t be able to kiss the same. I don’t even know if I’m going to ever want to kiss again. If that makes sense. It almost gives me anxiety to think about doing that,’ she said.
Passarella underwent two partial glossectomies to remove portions of her tongue, and she said the second surgery nearly cost her her life.
The area where part of her tongue was removed left her lingual artery more exposed to irritation. The lingual artery branches from the carotid artery in the neck and supplies blood to the tongue.
‘About nine days after my second surgery, I went to bed. I said my prayers with my babies and I woke up feeling like I had a mouthful of mucus, which is normal,’ she said.
But when Passarella spit up the ‘mucus,’ blood clots poured out of her mouth uncontrollably. ‘I yelled for my daughter and I said, get in here. I’m going to die. I’m going to die.
Passarella is pictured after her second tongue surgery. Around 39 percent of her tongue has been removed
Passarella’s medical knowledge and teenage daughter saved her after her artery burst
‘I said, you’ve got to get me to the hospital. She said, let’s call 911. I told her I’m going to die before they get here,’ Passarella recalled.
Thankfully with her knowledge in healthcare, the nurse shoved washcloths in my her mouth to hold pressure on the gushing tongue, and grabbed a mason jar for the blood to spill into.
‘It took about eight minutes to get to the hospital. By that time, even with the washcloths in my mouth, I had filled up the entire mason jar, the quart jar with blood,’ she said.
Passarella tried to stay calm, knowing that an elevated heart rate can increase blood flow and potentially worsen the bleeding.
‘Thankfully, my medical training taught me how to survive a little bit more than most.
‘They put me on a ventilator and they flew me to a trauma hospital and my surgeon met me there. He saved my life.
‘He was able to find the artery and stitch it back up. I was on life support, I think it was like a day and a half. I lost a quarter of my blood.’
The artery burst is an extremely rare complication, so rare that Passarella said the doctors didn’t mention it could happen.
Passarella’s neck after the procedure is pictured. Her illness has affected her in ways she never could have imagined. She’s no longer able to taste and can’t eat certain foods like burgers
Her journey has been nothing short of a rollercoaster, she received her diagnosis around the same time she lost her nursing job and health insurance in Sarasota, after the practice closed down due to Medicare cuts.
She had been set to start a new telehealth nursing job, but was forced to turn down the opportunity as she faced major surgeries to remove part of her tongue and would be unable to speak with patients during her recovery.
Passarella dipped into her savings to pay $900 out of pocket for a biopsy because she knew something was wrong. Throughout her search for answers, she said she felt dismissed and overlooked, in part because she lacked adequate insurance coverage.
Even now, during her recovery, she continues to battle with the state healthcare system.
‘But my insurance that I have, because I’m unemployed, I have to get state Medicaid insurance. Because that job I was going to start in March, I couldn’t start it because I was about to lose my tongue.
‘So I’ve been unemployed the whole time and the insurance I have through the state of Florida is denying me a PET scan. But I have to pay out of pocket for that.
‘I will have CT scans done every three months to check for disease for the next five years,’ she explained.
Passarella also said she has experienced neck stiffness following the surgery, adding that she has nerve damage extending into her shoulder.
Passarella is pictured after her artery burst. She stayed in the ICU for a day and a half and has since recovered
‘I need physical therapy. But, again, the insurance, the Medicaid insurance is denying it and has been denying it for the last month and a half. I feel like my right arm is becoming disabled. I’m in pain every day,’ she said.
Thankfully, a physical therapist discovered her TikTok page, where Passarella shares videos about her cancer journey and has built a following of over 40,000 people.
‘They are donating their services to me free of charge. I am so excited to be able to start physical therapy. But, again, it is ridiculous that in the United States of America a cancer patient has to fight to get care.
‘Not only a cancer patient, but somebody who has been a healthcare worker for 21 years. We have to fight to get any bit of our health care paid for,’ she said.
Passarella never expected her social media to take off, and says she is deeply grateful for the support and encouragement she has received along the way and is now doing her best to help others.
‘I get about 30 messages a day of people, mostly women, who say, I got this spot on my tongue and the doctor just keeps pushing me off. What should I do?’ she said.
The mom-of-four has also set up a GoFundMe to help support her medical expenses and it has raised more than $16,000 in donations so far.
Tongue cancer makes up about one percent of new cancer cases in the US, according to the National Cancer Institute.
Passarella is pictured after completing her surgeries as she celebrated heading home from hospital
It is one of the more common types of head and neck cancer. In 2023, an estimated 18,040 people in the US were diagnosed with the disease, and about 2,940 died from it.
Most tongue cancers start in the flat squamous cells that line the surface of the tongue. When these cells grow and divide abnormally, they can form a tumor.
Like other mouth and throat cancers, tongue cancer is often linked to heavy tobacco and alcohol use, as well as the sexually transmitted disease HPV.
Other key risk factors for mouth and throat cancers include being over age 45, being male, and having a weakened immune system. A diet low in fruits and vegetables may also increase risk.
But Passarella warned that it could happen to anyone as she did not have any of the usual risk factors.
‘[I had] no smoking, no drinking, no human papillomavirus (HPV), that’s one thing that is so important for people to know, that I did not have HPV, that not all tongue cancers are caused by HPV,’ she said.
