by At the age of 16, Eldiara Doucette felt pain in her right arm that she had trouble describing.
“It could easily have been classified with a standard teenage ‘growing pains’, which unfortunately is how much 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.”
By the time she was 18, her pain reached ‘unbearable levels’ and visited several doctors. In the beginning she thought she had carpale tunnel. A doctor ordered an MRI and eventually discovered why Doucette experienced such pain – she had a sarcoma, a soft tumor in her elbow.
“If you are a child, you have this complex of if” I am invincible, “she says.” I didn’t really accept the seriousness of the situation. ”
Pain that gradually increased
After the arm pain started, Doucette noticed that it was slowly becoming more serious. But she wasn’t sure how to approach it.
“It was something I was afraid of talking about,” she says. “I was a very frightened teenager.”
But when she went to university in California, the pain became overwhelming.
“It was nerve pain in my fingers and some of my explanation was that it felt like someone broke my fingers back,” she says.
Although Doucette knew she needed help, she did not understand how to navigate through the medical system, and she had no help. She eventually met some doctors who fired her when her pain deteriorated.
“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 everything he is is.”
Doucette, then 19, moved back to Florida and started investigating doctors and made an appointment with an orthopedic surgeon with ‘really good reviews’. She broke at the appointment.
“It was the first time I even recognized it out loud,” she says. “I started sobbing.”
At that time, her judge seemed swollen, so the doctor sent her for an MRI. When she returned for a follow-up, Doucette was stunned by what he said.
“He says,” I’m so f_____ sorry that nobody took you seriously. ” And I had something like “nothing after that is going to be good, right?” “Doucette remembers” he also has a 5.4 cm tumor, so about tumor of golf ball in my elbow. ”
He called the clog a “mass” and called the word sarcoma.
“At that time that meant nothing,” she says. “I know that many people do not mean sarcoma because it is such a rare cancer.”
She followed and visited a cancer center where the doctor suspected that she had something called a benign Schwannoma, a kind of non-cancer-like nerve tumor, notes the Mayo Clinic. The doctor advised to remove it to relieve Doucette’s pain. When she woke up after the operation, she felt so good, she cried.
“I had the usual surgical pain, but it was nothing in comparison,” she says. “I didn’t have that nerve pain that pursued my life.”
But a week later a phone call changed. Doctors sent samples from the masses to pathology, and revealed that she had cancer, synovial sarcoma, a rare soft tissue cancer that forms near the joints. “I learn that the Schwannoma -traffic diagnosis is actually common with sarcomas, especially synovial sarcoma,” she says. “It was such a roller coaster.”
This diagnosis of 2021 meant that Doucette had to undergo 25 rounds of radiation before a second operation, so that doctors could erase the margins and ensure that they remove the cancer. After the treatment, she had an MRI every three months to ensure that the cancer had not spread.
About a year after her diagnosis, Doucette was again at the university when she went for a scan that saw ‘something suspicious’.
“A few months before my annual scans when I started to notice those symptoms,” she says. “I had a little continuous nerve pain because of how much they had to mess with the median nerve – the tumor had grown around it.”
The MRI results have re -used Doucette’s life.
“I finally got back on the right track,” she says. “There is something in remission that is inherently scary, because if all goes well, they can still get bad. But once they are bad, they are bad. ”
After the MRI, doctors tried a biopsy without anesthesia, but the masses interwoven with her median nerve and the pain felt intense.
“Have a needle pushed in a nerve – it was one of the more traumatic things I had experienced,” she says. She started sobbing.
A nurse who held her hand also started to cry and the doctor stopped the biopsy because Doucette experienced so much pain.
“It is one of the more emotional parts of my story,” she says. “It’s something I always think about.”
Doucette underwent the biopsy with anesthesia, and she soon heard that her cancer had returned in 2022. After an operation to install a port, she started three rounds of chemotherapy, including doxorubicin, also known as the Red Devil for his “bright red color”.
“I was in the hospital for six days in the hospital and I get that infusion every day,” she says. “Then the next two cycles were five days long.”
After the treatment, Doucette’s scans looked clear.
“I was officially cancer -free in terms of labeling it,” she says. “With my cancer it is so aggressive that it can just linger.”
Doucette was in remission for the next year and a half. She underwent a few arm operations to try to help with pain and function. But most of the time she enjoyed life.
“It was a good time. I’m glad I got that chance, “she says. “In retrospect it was almost like a farewell to my arm, which I didn’t know it came in at the end of my remission.”
Synovial sarcoma
Breast cancer, lung cancer and colon cancer are fixed cancer tumors that are known as carcinomas, which are the most common type that, according to Cleveland Clinic, are 80% to 90% of cancer diagnoses everywhere.
Although much rarer, sarcomas cancers that grow ‘in some of the soft connective tissues,’ says Dr. Aaron Burkenroad, a medical oncologist and hematologist at UCLA Health, who is now part of the Doucette treatment team, against Today.com. Synovial sarcoma, the type of cancer that Doucette has, develops in “The Synovium, (that) is actually the lining of the joint.”
Sarcomen can develop everywhere, but they usually occur in the arms and legs, he notes. The Golden Standard is an operation in the treatment of sarcomen.
“The mainstay of the treatment is full surgical resection,” he says. “Even with surgical intervention there is a risk of recurrence.”
If the cancer withdraws or spreads to other parts of the body, doctors also consider using chemotherapy.
“The standard medical therapy is on chemotherapy -based treatments,” he says. “There has been a limited role in other means, such as oral targeted therapies or immunotherapy.”
Doctors Diagnosis Synovial Sarcoma Sometimes as a harmless mass for various reasons, including the rarity and making a diagnosis based on a scan.
“Someone will take a look and say,” Oh, I think this is a benign lesion, so let’s just cut it because it may cause some symptoms, “Burkenroad explains.” If they remove it, they think that: “Oh, this is actually a sarcoma for soft tissue.”
That means that patients, just like Doucette, have to undergo the next operation to ensure that they have clear margins. Doucette has experienced what is known as a local recurrence, where her cancer has returned, but in the same place. Having so many operations 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, when Doucette massaged her scar, she felt a “small lump” on her elbow.
“Sun my heart,” she says. “It takes a lot to bother me or (understand me) worked up, but I almost immediately started crying.”
Her doctor ordered an MRI, followed by a biopsy, who found tumors, including one that grew in her bone.
“They have depicted three new (masses),” she says. “It was very shocking to hear there … (were) more in a short time. Because my three -month set of scans did not show anything. ‘
At the time, Doucette waited for a nerve transplant operation to try to help with the constant problems with which she was confronted with her elbow and poor. When the new MRI and biopsy results returned, doctors advised amputation of her right arm above the elbow.
“Amputation is the only way to eliminate that possibility of further local recurrences,” says Burkenroad. “The hope is that by doing this type of extensive operation, it will also eliminate the possibility of repetition as a metastatic disease … but unfortunately it is not a guarantee.”
Doucette understood that amputation could be an option.
“I knew it would come. But my doctor said: ‘We can do this earlier or do this later. I know that some people like to take time and say goodbye, “Doucette remembers. “I don’t like to wait.”
Doctors planned her amputation operation five days later. Doucette made a plaster from her hand and created taps, as Bionic Barbie, who pulled on her amputation. Just before the operation of the operation, friends wrote short “farewell” notes about Doucette’s arm.
“I have some pictures of that as my last memory,” she says.
When she woke up after her amputation operation, she felt strange at ease.
“I really think making those videos and processing my feelings really helped to prepare me every day,” she says. “If I just didn’t think about it and had taken the days in my head and would keep myself distracted in non-poor-related ways, it would have been much more shocking.”
Surrounded by her friend and best friend, helped too. While the amputation prevents the cancer from returning to her elbow, her doctors have recommended additional chemotherapy after surgery.
“I have had too many recurrences. I really run a high risk of spreading my cancer, “she says. “My oncologist raised that chemo when postponing another repetition or hopefully cure forever.”
Doucette plans to get a prosthetic arm and hand and has a goofundme to cover the costs. Sharing her story also helps her to encourage young people to argue for their health.
“Sarcoma usually happens with many younger people. We all hear about children’s cancer. We hear about geriatric cancer. But young adults are stuck in this uncomfortable midfield where it is like you are invisible, “she says. “It is possible to feel normal and to feel authorized in the decisions you make for yourself and the path you are on you, even if it is as tragic as cancer.”
