23-Year-Old Woman’s Jaw Cancer Pain Dismissed As Pregnancy Symptoms– How To Advocate For Yourself
By Danielle Cinone,
2024-02-05Understanding Ewing Sarcoma
- Poppy Stewart-Brown, from South East England, was diagnosed with Ewing sarcoma at age 23 when she was pregnant. Prior to her diagnosis, she experienced fatigue, nosebleeds, headaches, and blood clots coming out of her mouth, but doctors dismissed her symptoms as normal side effects of pregnancy.
- Ewing sarcoma is a type of sarcoma that occurs in bones or the soft tissue surrounding the bones, and “lifelong monitoring” is generally recommended after treatment for the disease.
- Treatment for Ewing sarcoma depends on the location of the 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.
- Prior to Stewart-Brown’s diagnosis, she sought medical advice multiple times in search of why she was experiencing unusual symptoms. Her persistence led to her diagnosis.
- It’s important to remember 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.
Inspiring Sarcoma Warriors
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- 22-Year-Old Alabama Man With Synovial Sarcoma Marries Love of His Life From the Comfort of His Hospital Bed; Understanding Sarcoma Cancer
- Brave siblings, 7 and 2, Fight Back After Both Are Diagnosed With Childhood Cancer; What Is Ewing Sarcoma?
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. Resilient 8-Year-Old Who Overcame Ewing Sarcoma Sells More Than 32,000 Boxes of Girl Scout Cookies To Break Record 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. Related: Indiana Native Beats Ewing Sarcoma As a Kid, Becomes Millionaire Businessman: "Chemo Teaches You that You're Going to Be Thrown Curveballs" 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
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
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