A Frustrating Diagnosis
- Love Island reality star Demi Jones, 22, had a majorly-delayed thyroid cancer diagnosis largely due to the pandemic, and waited seven months to get her news.
- The UK TV personality has been stressing the importance of self-advocacy, as she received clear ultrasounds, but still insisted she had cancer, which doctors finally found out that she was right.
- It pays to be pushy. If something doesn’t feel right, a leading expert says to keep fighting back until there is some resolve, whether it’s going in for more tests or switching doctors all together.
Demi’s tests were delayed six times because of COVID-19 and its effect on the medical world, and it took seven months for her to get her cancer diagnosis. Two ultrasounds came back clear, which was certainly not the case.Read More
“If I’d listened to the doctors then I might be sitting here now not knowing I had cancer inside me,” the Portsmouth, England native said to The Sun. “The tests all came back completely clear. Even today I don’t know why the ultrasound didn’t show anything.” Jones competed on the sexy singles reality competition in 2020.
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When she was told she had nothing to worry about, Demi couldn’t shake the feeling that doctors were wrong, and she kept advocating for herself. Finally, months later, she received an apology and was told they needed to get her golf-ball sized tumor removed immediately.
“Pretty much as soon as I had walked in the consultant said, ‘We’re really sorry. We think it could be thyroid cancer. We need this cut out of you as quickly as possible,'” she said.
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Demi had the golf-ball sized lump removed last month, but she still needs another surgery to remove her “entire thyroid, followed by radioactive iodine treatment to destroy any remaining cancer cells,” according to the interview.
“I’ve felt scared and angry,” she admits. “I went for a coffee the other day with a friend and said ‘Why me? I don’t know anyone my age who has got cancer’. But I’m lucky, my cancer is treatable.”
Jones appeared on Good Morning Britain last week to further open up about her experience.
“My step-dad has cancer, so I knew that I had to push for appointments,” she explained. “I knew because of him that I had to ask for more. I said, ‘Is there more scanning you can do, more testing you can do?’ They offered to drain the fluid, and it was that came back potentially cancerous. Most people my age would just accept that fact and go on my way.”
Jones wrote on social media in April about the importance of self-advocacy when she received results of the false-positive scan. “I challenged it and asked if they could do more, in which they said ‘oh well we can test the fluid if you want us to?’ Thank god I asked as it was the fluid that [came] back potentially cancerous. Always push!”
Now, she is continuing to use her experience to help educate others.
“It’s all been a bit of a whirlwind, but I’ve already contacted a few charities to enquire about becoming an ambassador,” the University of Winchester graduate said.
What is Thyroid Cancer?
Thyroid cancer forms when DNA changes cells in the thyroid gland and causes those cells to grow uncontrollably and produce a lump. The thyroid is a butterfly-shaped gland in the neck that regulates metabolism, the body’s complex process that converts food and drink into energy.
According to the American Cancer Society (ACS), 44,280 new cases of thyroid cancer will be diagnosed during 2021, and there will be around 2,200 deaths from the disease, which is most commonly diagnosed at a younger age than other adult cancers. Women are three times more likely to develop cancer in the thyroid.
Signs of thyroid cancer include a swelling or lump in the neck. There are tests to examine the thyroid and neck in order to diagnose thyroid cancer, along with blood tests. Thyroid nodules, unusual growths in the thyroid gland, are common but usually are not cancer. Feeling for lumps in your neck (or breasts, or anywhere else in your body) is always a good idea, along with getting routine checkups at the doctor’s office.
Why It’s Important to be Your Own Advocate
Demi Jones does not seem shy when it comes to being on TV or sharing sometimes-provocative Instagram posts, but most importantly, she certainly wasn’t shy in fighting back to get the diagnosis that she sensed all along.
Dr. Zuri Murrell at Cedars-Sinai Medical Center says sometimes patients need to be “a little pushy.”
“From a doctor’s perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn’t work,” Dr. Murrell explains to SurvivorNet. “As a patient, if you don’t feel like each of these four things has been accomplished, just ask! Even if it requires multiple visits or seeing additional providers for a second opinion, always be your own advocate.”