23-Year-Old Woman’s Jaw Cancer Pain Dismissed As Pregnancy Symptoms– How To Advocate For Yourself

Speaking to Daily Mail’s FEMAIL in a recent interview, Stewart-Brown, recounted feeling “relieved” once she was informed she had cancer after months of seeking answers to why she was experiencing headaches, fatigue, as well as what the lump she discovered was on her jaw.

“Before I was diagnosed, I was working abroad without a care in the world. I met my partner Tom while I was out there and quite quickly after we met, I fell pregnant and it just felt right. We moved back to the UK and I thought we would live a nice, normal family life.

“I wasn’t even aware that you could get cancer in your bones or soft tissue until I was diagnosed. I believed up until my diagnosis that there was no way it could’ve been cancer as I was only 23. I thought it was just a really rough pregnancy.”

Stewart-Brown, who began chemotherapy just three weeks after giving birth to her daughter, continued, “As strange as it sounds, it was such a relief when I was diagnosed. I had to fight to get someone to believe me. As a pregnant person, I was made to feel like I was being a nuisance. It was relief that I wasn’t crazy. I was 34 weeks pregnant at this point.”

Looking back on when her symptoms began in November 2018, Stewart-Brown said she was just 12 weeks pregnant when she first starting having severe headaches, which were unusual for her.

When she was five months pregnant, she noticed a lump on her jaw which she dismissed as a wisdom tooth.

She explained to FEMAIL, “I then started to experience nose bleeds and fatigue alongside the headaches, but the doctors just said were common pregnancy symptoms. Soon after, I found a spot inside my nose. It kept growing bigger and soon it was blocking off my airway inside. At first, doctors didn’t know what the growth was.”

Stewart-Brown said she visited her doctor multiple times to get answers on the growth in her nose, but she was ultimately referred to an ENT consultant, where she had a biopsy done, which revealed she had cancer.

Stewart-Brown finally was able to receive treatment in The Teenage Cancer Trust unit at The Royal Marsden NHS Foundation Trust and The Christie NHS Foundation Trust in Manchester, U.K.

Reflecting on how she spent more than 150 nights in the hospital and experienced uncomfortable side effects of cancer treatment, loving mom credits the support of her mom, partner Tom, and daughter, for helping her through adversity.

RELATED: What Are Sarcomas? Know the Types and Symptoms of These Rare Cancers

“We were an A-team really. Having Bella there was a reason to get up. She was the reason to get through treatment and to smile. She saved my life,” Stewart-Brown, who received an “all clear” in February 2020, in told FEMAIL.

More recently, Stewart-Brown was told she was now at a “four year post-treatment all clear” and has checkups every six months.

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In an earlier interview with Bone Cancer Research Trust, Stewart-Brown said, “I have the most amazingly supportive friends and family who have supported me throughout my diagnosis and treatment. My message to others would be to take each day at a time, be kind to yourself and listen to your body.”

She continued, “When I was diagnosed, I had never heard of Ewing sarcoma, and it had never even crossed my mind that the lump I found in my jaw would lead to a cancer diagnosis. I was young and naive and never thought I could have cancer at 23 years of age and whilst being pregnant.

“It is so important to raise awareness as someone will be the rare case. Unfortunately, I was the rare case in this story, and my family and I had to fight to be believed that I was unwell. I feel the doctors should rule out the rare cases first then start to look at more common illnesses.”

What are Sarcomas?

Sarcoma is a term used to describe an array of more than 70 rare cancers that begin in the bones and the soft tissues. This diverse group of diseases account for only about one percent of tumors in adults and just over 10% of tumors in children.

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The main symptom of sarcomas is generally a slow-growing, painless mass, but symptoms can be hard to detect as soft tissue sarcomas are typically painless and bone sarcomas can be mistakenly diagnosed as orthopedic injuries.

“Unfortunately, most sarcomas do not cause many of the symptoms that may be associated with other cancers,” Dr. Dale Shepard, director of the Cleveland Clinic Taussig Cancer Institute Phase I and Sarcoma Programs, previously told SurvivorNet.

“A mass the size of a golf ball or larger and growing should be evaluated as a potential sarcoma. It’s important that patients who do have symptoms are not dismissive of them.”

Types of Sarcoma Cancers

The word sarcoma refers to a large array of bone and soft tissue cancers, and individual cancers within that set go by unique names. Some of the types of sarcomas include:

• Ewing’s sarcoma is a cancer that typically occurs in and around the bones, often in the arms or legs, or the bones of the pelvis. It most commonly occurs in children and young adults.
• Kaposi sarcoma is a very rare type of cancer that causes lesions on the skin, in lymph nodes, organs, and the mucous membranes of the mouth, nose, and throat. It typically affects people with compromised immune systems, such as those with HIV.
• Epithelioid sarcoma is a type of soft tissue cancer that grows slowly. It is likely to begin under the skin of areas like the finger, hand, forearm, lower part of the leg, or foot.
• Synovial sarcoma, also called malignant synovioma, is a cancer that can form soft tissues such as muscle or ligaments, commonly close to joints or in areas like the arm, leg, or foot.
• Osteogenic sarcoma, also called osteosarcoma, is the most common type of cancer that starts in the bones. This is the type of cancer O’Brien had.
• Spindle cell sarcoma is very rare, comprising as little as 2 percent of all primary bone cancer cases. It can start in the bone, often in the arms, legs, and pelvis, and usually occurs in people over 40.

Understanding Ewing Sarcoma

Ewing sarcoma is a specific type of cancer that occurs in bones or in the soft tissue surrounding the bones. It is most commonly found in adolescents, but younger children, as well as adults (in their 20s and 30s) can also be diagnosed with this disease.

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According to the National Cancer Institute, “Ewing sarcoma most often forms in the bones of the legs, arms, feet, hands, chest, pelvis, spine, or skull. Less often, it forms in the soft tissue of the trunk, arms, legs, head, neck, retroperitoneum (area in the back of the abdomen behind the tissue that lines the abdominal wall and covers most of the organs in the abdomen), or other areas.

“Ewing sarcoma has also been called peripheral primitive neuroectodermal tumor, Askin tumor (Ewing sarcoma of the chest wall), extraosseous Ewing sarcoma (Ewing sarcoma in tissue other than bone), and Ewing sarcoma family of tumors.”

Getting the Emotional Support You Need

The National Cancer Institute also explains that a genetic condition may raise the risk of Ewing sarcoma and other sarcomas.

Additionally, signs and symptoms of this type of cancer include swelling and pain near the tumor.

Testing and staging for this type of cancer is done by examining the bone and soft tissue, and diagnoses are found after a biopsy, according to the NIH.

Some signs and symptoms of Ewing sarcoma include:

• Pain, swelling or tenderness near the affected area
• Bone pain
• Unexplained tiredness
• Fever with no known cause
• Losing weight without trying

Treatment for Ewing sarcoma depends on the location of cancer and the size of the tumor at the time of diagnosis. A doctor’s treatment plan may involve a combination of chemotherapy, radiation, and surgery. Sometimes the aggressive nature of these treatments can cause both short-term and long-term side effects. According to the Mayo Clinic, “lifelong monitoring is recommended” after completing treatment to watch for potential late effects of the intense treatment.

The Importance of Getting a Second Opinion

After receiving a cancer diagnosis, it’s important to remember that you can and should talk to other cancer specialists about your disease.

“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care,” National Cancer Institute Chief of Surgery Steven Rosenberg told SurvivorNet in a previous interview. “Because finding a doctor up to the latest information is important.”

RELATED: Second (& Third) Opinions Matter When Deciding Between Surgery or Radiation

As we highlight in several areas of SurvivorNet, highly respected doctors sometimes disagree on the right course of treatment, and advances in genetics and immunotherapy are creating new options.

Also, in some instances, the specific course of treatment is not clear-cut. That’s even more why understanding your disease’s potential approaches is crucial.

At the National Cancer Institute, a patient referral service will “guide patients to the right group depending on their disease state so that they can gain access to these new experimental treatments,” Rosenberg says.

Cancer Research Legend Urges Patients to Get Multiple Opinions

Furthermore, getting another opinion may also help you avoid doctor biases. For example, some surgeons own radiation treatment centers. “So there may be a conflict of interest if you present to a surgeon recommending radiation because there is some ownership of that type of facility,” Dr. Jim Hu, director of robotic surgery at Weill Cornell Medical Center, tells SurvivorNet.

Other reasons to get a second opinion include:

• To see a doctor who has more experience treating your type of cancer
• You have a rare type of cancer
• There are several ways to treat your cancer
• You feel like your doctor isn’t listening to you or isn’t giving you sound advice
• You have trouble understanding your doctor
• You don’t like the treatment your doctor recommends or are worried about its possible side effects.
• Your insurance company wants you to get another medical opinion
• Your cancer isn’t improving on your current treatment

Be Pushy, Be Your Advocate, Says Leading Expert

The bottom line is that being proactive about your health could be life or death. Learn as much as possible from as many experts as possible so you know you did your best to take control of your health.

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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