Woman, 22, describes the cancer symptom she mistook for growing pains

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Woman, 22, describes the ******* symptom she mistook for growing pains

At 16, Eldiara Doucette felt pain in her right arm that she struggled to describe.

“It could have easily been classified with a standard teenage ‘growing pains,’ which is, unfortunately, how a lot of this flies under the radar,” the now 22-year-old from California tells TODAY.com. “I had that pain in my right arm, and it was nothing at the time.”

After experiencing arm pain for years, Eldiara Doucette was eventually diagnosed with a sarcoma, a soft tissue *******.

By the time she was 18, her pain reached “unbearable levels,” and she visited several doctors. At first, she thought she had carpal tunnel. A doctor ordered an MRI and eventually discovered why Doucette experienced such pain — she had a sarcoma, a soft tissue tumor in her elbow.

“When you’re a kid you have this complex of like ‘I am invincible,’” she says. “I didn’t really accept the gravity of the situation.”

Pain that gradually increased

After the arm pain began, Doucette noticed it slowly became more severe. But she wasn’t sure how to address it.

“It was something I felt afraid to talk about,” she says. “I was a very anxious teenager.”

But when she went to college in California, the pain became overwhelming.

“It was shooting nerve pain out into my fingers and part of my explanation was it felt like someone was breaking my fingers backward,” she says.

While Doucette knew she needed help, she didn’t understand how to navigate the medical system, and she didn’t have help. She eventually met with some doctors who dismissed her as her pain worsened.

“I can’t sleep. I can’t eat. I can’t drive,” she explains. “There is a certain level of pain that a person reaches where all they are is that.”

Doucette, then 19, moved back home to Florida and began researching doctors and made an appointment with an orthopedic surgeon with “really good reviews.” At the appointment, she broke down.

“It was the first time that I even acknowledged it out loud,” she says. “I started sobbing.”

At the time, her right elbow appeared swollen, so the doctor sent her for an MRI. When she returned for a follow-up, Doucette was stunned by what he said.

“He goes, ‘I’m so f______ sorry nobody took you seriously.’ And I was like ‘Nothing after that is going to be good, right?’” Doucette recalls. “He goes on to say that I have a 5.4 cm tumor, so roughly golf-ball sized tumor in my elbow.”

He called the lump a “mass” and mentioned the word sarcoma.

“At the time that meant nothing,” she says. “I know to a lot of people sarcoma means nothing because it’s such a rare *******.”

She followed up and visited a ******* center where the doctor suspected she had something called a benign schwannoma, a type of non-cancerous nerve tumor, the

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notes. The doctor recommended removing it to help ease Doucette’s pain. When she woke up after surgery, she felt so good, she cried.

“I had the usual surgery pain but in comparison it was nothing,” she says. “I didn’t have that nerve pain that was haunting my life.”

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Before undergoing an arm amputation to treat her synovial sarcoma, Eldiara Doucette asked her friends to write notes on her arms as a kind of goodbye to it.

But a week later, a call changed everything. Doctors sent samples of the mass to pathology, and it revealed she did have *******, synovial sarcoma, a rare soft tissue ******* that forms near the joints. “I’m learning the schwannoma misdiagnosis is actually prevalent with sarcomas, specifically synovial sarcoma,” she says. “It was such a roller coaster.”

This 2021 diagnosis meant that Doucette needed to undergo 25 rounds of radiation before a second surgery so doctors could clear margins and make sure they removed the *******. Following treatment, she had an MRI every three months to make sure the ******* had not spread.

About a year after her diagnosis, Doucette was re-enrolling in college when she went for a scan that spotted “something suspicious.”

“A couple of months before my year scans is when I started to notice those symptoms,” she says. “I was in a little bit of perpetual nerve pain because of how much they had to mess with the median nerve — the tumor had grown around it.”

The MRI results upended Doucette’s life again.

“I had finally gotten back on track,” she says. “There’s something about being in remission that’s inherently scary because when things are good, they can still turn bad. But once they’re bad, they’re bad.”

After the MRI, doctors attempted a biopsy without anesthesia, but the mass intertwined with her median nerve and the pain felt intense.

“Having a needle pushed into a nerve — it was one of the more traumatic things that I had experienced,” she says. She started sobbing.

A nurse holding her hand also started crying and the doctor stopped the biopsy because Doucette experienced so much pain.

“It’s one of the more emotional parts of my story,” she says. “It is something I think about all the time.”

Doucette underwent the biopsy with anesthesia, and she soon learned her ******* had recurred in 2022. After having surgery to install a port, she started three rounds of chemotherapy, including doxorubicin, also known as the red ****** for its “bright red color.”

“I was inpatient in the hospital for six days and every day I’m getting that infusion,” she says. “Then the next two cycles, they were five days long.”

After treatment, Doucette’s scans looked clear.

“Officially I was *******-free in terms of the labeling of it,” she says. “With my *******, it is so aggressive it can just linger.”

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Eldiara Doucette held a memorial to say goodbye to her arm after doctors amputated it to treat her rare soft tissue *******. Sharing her story on TikTok helped Doucette process many emotions she’s faced since being diagnosed with ******* originally in 2021.

For the next year and a half, Doucette was in remission. She underwent a few arm surgeries to try to help with pain and function. But mostly, she enjoyed life.

“It was a beautiful time. I’m glad that I had that opportunity,” she says. “In retrospect, it was almost like a farewell to my arm, which I didn’t know was coming in near the end of my remission.”

Synovial sarcoma

Breast *******, lung ******* and colon ******* are solid ******* tumors known as carcinomas, which are the most common type, making up anywhere from 80% to 90% of ******* diagnoses, according to the

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While much rarer, sarcomas are cancers that grow “in some of the soft connective tissues,” Dr. Aaron Burkenroad, a medical oncologist and hematologist at UCLA Health, who is now part of Doucette’s treatment team, tells TODAY.com. Synovial sarcoma, the type of ******* Doucette has, develops in “the synovium, (which) is actually the lining of the joint.”

Sarcomas can develop anywhere, but they most often occur in the arms and legs, he notes. In treating sarcomas, the gold standard is surgery.

“The mainstay of treatment is complete surgical resection,” he says. “Even with surgical intervention, there is a risk for recurrence.”

If the ******* recurs or spreads to other parts of the body, doctors also consider using chemotherapy.

“The standard medical therapy is chemotherapy-based treatments,” he says. “There has been a limited role of other agents, like oral targeted therapies or immunotherapy.”

Doctors sometimes misdiagnose synovial sarcoma as a harmless mass for several reasons, including its rarity and making a diagnosis based only on a scan.

“Someone will take a look and say, ‘Oh I think this a benign lesion so let’s just cut it out because maybe it’s causing some symptoms,” Burkenroad explains. “When they remove it, they find that, ‘Oh, this is actually a soft tissue sarcoma.’”

That means patients, much like Doucette, need to undergo subsequent surgery to make sure they have clear margins. Doucette experienced what’s known as a local recurrence, where her ******* has come back, but in the same spot. Having so many surgeries in one location can lead to problems with pain and mobility.

“She certainly had some symptoms related to the tumors and that included things like neuropathic pain,” he says.

‘Very shocking’

In 2024, as Doucette massaged her scar, she felt a “little nodule” on her elbow.

“My heart sunk,” she says. “It takes a lot to bother me or (get me) worked up, but I almost instantly started crying.”

Her doctor ordered an MRI, followed by a biopsy, which found tumors, including one growing into her bone.

“They imaged three new (masses),” she says. “It was very shocking to hear there … (were) more in a short amount of time, too. Because my three-month set of scans before that showed nothing.”

At the time, Doucette was waiting for a nerve transplant surgery to try to help with the ongoing problems she faced with her elbow and arm. When the new MRI and biopsy results returned, doctors recommended amputation of her right arm above the elbow.

“Amputation is the only way to eliminate that possibility of further local recurrences,” Burkenroad says. “The hope, too, is that by doing this type of extensive surgery it will also eliminate the possibility of recurrence as metastatic disease … but it’s not a guarantee, unfortunately.”

Doucette understood amputation could be an option.

“I knew it was coming. But my doctor said, ‘We can do this sooner or do it later. I know that some people like to take time and say goodbye,’” Doucette recalls. “I don’t like waiting.”

Doctors scheduled her amputation surgery for five days later. Doucette made a plaster cast of her hand and created TikToks, as

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, counting down to her amputation. Right before surgery surgery, friends wrote short “farewell” notes on Doucette’s arm.

“I have some pictures of that as my last memory,” she says.

When she woke after her amputation surgery, she felt strangely at ease.

“I really think that making those videos and processing my feelings day by day really helped me prepare,” she says. “If I had just not thought about it and counted down the days in my head and kept myself distracted in non-arm related ways, then it would have been much more jarring.”

Being surrounded by her boyfriend and best friend, also helped. While the amputation will prevent the ******* from returning to her elbow, her doctors recommended additional chemotherapy following surgery.

“I’ve had too many recurrences. I am at really high risk for my ******* spreading,” she says. “My oncologist brought up that chemo could be helpful in either delaying another recurrence or hopefully getting that cured for good.”

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Eldiara Doucette hopes to empower other young adults to take control of their health and advocate when needed.

Doucette plans on getting a prosthetic arm and hand and has a GoFundMe to cover the costs. Sharing her story too helps her encourage young people to advocate for their health.

“Sarcoma tends to happen in a lot of younger people. We all hear about pediatric *******. We hear about geriatric *******. But young adults are stuck in this awkward middle ground where it’s like being invisible,” she says. “It’s possible to feel normal and feel empowered in the decisions you’re making for yourself and the path you are on even if it is as tragic as *******.”

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