Mom, 36, Ignored for Years — Then Doctors Discovered Something Rare and Shocking

A woman suffered through various health issues, but she was dismissed over the years by multiple different types of doctors. Eventually, she got a shock diagnosis: she had one of the world’s rarest cancers.

Ashleigh Smith dealt with an array of medical issues, including heart palpitations, stomach pain and exhaustion, and she frequently experienced pain throughout her body in her feet, ankles, hips, back and neck.

“I saw my general practitioner, as well as a couple of other general practitioners, along the way, a chiropractor, two different physios, an exercise physiologist, an osteopath, a naturopath and a dietitian. I even tried acupuncture and cupping,” Smith, 36, tells PEOPLE exclusively.

“I was told my sleep issues were caused by anxiety, the migraines I thought I was having were ‘neck headaches’ from prior whiplash injuries, the stomach pain was investigated with an endoscopy, which just came back inconclusive,” she continues.

“Everything could be explained away, but it wasn’t until I developed pain in the left side of my neck, and what I thought were swollen lymph nodes, that a doctor ordered an ultrasound that discovered tumors,” adds Smith.

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Smith, who is married and has two children, eventually got a diagnosis for carotid body tumors, a type of paraganglioma, which is classified as a neuroendocrine cancer.

“My diagnosis was a rollercoaster,” Smith recalls. “After discovering the lump in my neck, my doctor sent me for an ultrasound, and while I was lying there, the sonographer suddenly got quiet and serious. The doctor rang me the next morning, so I knew it wasn’t good. He said, ‘It looks like you have carotid body tumors. They are very rare. Yours are bilateral, which is even more rare.’ “

Smith’s doctor arranged for her to get a scan done. “When the results came back, he referred me to a vascular surgeon and told me the likelihood of the tumors being malignant was low, about 10%,” she says. “I joked that I would buy a lotto ticket with those odds, and he said, ‘Don’t stress, I’ll tell you when to stress.’ “

During that follow-up appointment, Smith says she was told by a specialist, “You know you have bilateral carotid body tumors, and you know they have spread to your lymph nodes and spine?” However, she admits, “I did not. That felt terrifying.”

Smith continued to go to multiple follow-up appointments, and she continued to see various doctors. Eventually, when she was referred to an oncologist, Smith says, “It was at this point that I understood that I had cancer.”

“I took a week off work because I couldn’t comprehend it all,” the mom of two tells PEOPLE. “I found out this type of cancer is very slow-growing, and that I likely had it for decades. I felt angry that it hadn’t been picked up sooner, and so confused as to how I even had it. How could I be so rare?”

“I made a lot of jokes for the first few months. I coped by using humor, but it wasn’t until I realized I had to undergo radiation that I stopped being amused and started to feel terrified and overwhelmed,” Smith, who works as a support coordinator, continues.

“After my diagnosis, and before starting treatment, I felt like a fraud,” she adds. “Outwardly, I didn’t look sick. No one could feel the constant pain, no one saw me at night when I would flop on the couch.”

Amid her health setbacks, Smith kept working. “I knew I was going to need time off, but I didn’t have enough leave,” she says. “The expenses were also piling up, with each scan costing hundreds of dollars, and each specialist visit on top of that.”

Knowing that a procedure she would need to undergo would be costly, Smith tells PEOPLE, “I set myself a goal of earning that via food delivery services before surgery.”

“I was working my usual job, picking the kids up from school and then delivering food in the afternoon until dinner time,” she explains.

Adds Smith, “On the weekends, my husband would drive and I would deliver.”

Her diagnosis, Smith says, deeply affected her young children — a 10-year-old and a 12-year-old. “My children’s father had a friend who recently passed away from a brain tumor just before my diagnosis, so to my kids, cancer meant death,” she explains.

“But I have told them I am not dying. My daughter often comments that she wishes that her ‘pre-cancer Mom’ would come back, and on her first day of school, she said, ‘I don’t wish for a good day, or a nice teacher, I just wish for my Mom to get better,’ ” Smith tells PEOPLE.

“I try to only tell them the parts they need to know, and I don’t worry then with the day-to-day appointments and scares,” the mom adds. “They have had to step up and help out around the house more, they try to help as much as they can, but they also forget how sick I am.”

“My son recently asked me why I am always the last one to the car, and why I move so slow. I had to remind him that I still have cancer,” Smith continues.

Smith underwent surgery to remove her right carotid body tumor in November 2025. “Everything went very well, my surgical pain was minimal, and my recovery was fairly straightforward, but as I did not have enough paid leave, I returned to work 10 days later,” she tells PEOPLE. “It took four weeks before I finally had enough energy to get through a full workday.”

At that point, Smith decided to go ahead with radiation. She recalls, “The surgeon had made it clear that removing the other tumors on my left side was not an urgent priority, as ‘they are usually very slow growing,’ but I was in constant pain and wanted to get things moving. So I elected to have radiation over Christmas and New Year’s.”

The holiday season, Smith says, was “sad and lonely.” She explains, “I did my radiation and came home for a sleep each day. It caused flare pain in my spine, and I would often cry from the exhaustion and pain.”

Smith completed her radiation treatment in January. “I had thought I was just going to rush through all the treatment, be deemed ‘cancer-free’ and get on with my life, but radiation completely wiped me out, and I suddenly became aware of just how sick I was,” Smith says. “Especially when I found out that the treatment was considered palliative radiation, as there is no cure. It was just to try to reduce the pain and hopefully stop the tumor from growing.”

Tragedy struck again three weeks later, however, when Smith underwent another surgery that she tells PEOPLE “altered the course of my life.”

Before that operation, doctors told her that a larger tumor changed their course of action, and they worried that if they removed it, Smith would lose the ability to swallow, talk and move her tongue.

“None of this had been explained to me prior, so I just mumbled ‘okay’ and tried not to cry as they put me under,” Smith, who has a GoFundMe set up for herself, recalls.

After that surgery, the mom dealt with more health setbacks, including issues with increased blood pressure, migraines, vomiting, nausea and light sensitivity, among others.

Looking ahead, Smith says, “I am really struggling with the idea of the future, as I just don’t know what it will bring. I try to take it one day at a time, and my husband reminds me to take it one hour at a time on the bad days.”

“We were supposed to be saving for a house, and that’s all gone. We were supposed to travel, but we can’t now. I was supposed to get a promotion at work, and now I am unemployed,” she continues. “Everything I planned has fallen to pieces, so now I just focus on what I am doing today, and tomorrow I will focus on what I am doing that day.”

Smith adds, “I can’t look any further ahead, as I just don’t know what days I can get up and join the family, and what days will be spent in bed in the dark.”

Still, amid all the heartache, Smith tells PEOPLE, “My journey has been hard, but I have been so surrounded by love and support that I consider myself very lucky. My husband works so hard to financially support us as best he can on one income, my siblings all check in frequently, my colleagues sent care packages, and friends and family have reached out with packages, letters and messages and that have kept me feeling hopeful. I am so grateful for each and every one of them.”

When it comes to advice for others going through a similar situation, or those who may face something similar in the future, Smith says, “Live in your body, so you know it better than anyone else. Don’t just blindly believe medical professionals because they have studied, they don’t know what you’re feeling. Also, don’t be afraid to get a second opinion.”