The Importance of Advocating For Yourself
- Gaining weight around your stomach as you get older is usually just that — weight gain. But for one woman, it meant a 17-pound cancerous tumor and a rare cancer diagnosis.
- Amanda Shoultz, 29, was diagnosed with liposarcoma — a type of soft tissue sarcoma, and a rare type of cancer that develops in your fatty tissue.
- Shoultz’s story, while a scary one, is an important one, as it highlights the need to advocate for your own health.
Amanda Shoultz, 29, of Dallas began to notice earlier this year that she was gaining weight around her stomach. “I had noticed I was slowly starting to gain weight over the years,” she tells WFAA ABC 8 News in Dallas. “I just thought it was part of getting older. But this, my stomach almost looked like I was bloated all the time.”Read More
Shoultz’s weight gain in fact wasn’t a result of getting older. Instead, it was because she had a 17-pound tumor growing in her abdomen. It was 33 centimeters wide. On Sept. 21, she was diagnosed with liposarcoma — a type of soft tissue sarcoma, and a rare type of cancer that develops in your fatty tissue.
At 10 on @wfaa, her message is very simple: listen to your body and follow your gut.
Below is video from her surgery.
The tumor was 33 centimeters wide 😳 pic.twitter.com/sRsARnHVAj
— Matt Howerton (@HowertonNews) October 7, 2021
Her gastroenterologist immediately scheduled her for surgery at Baylor University Medical Center — just six days after her diagnosis. The surgery, which was a success, took just two hours. Shoultz’s story, while a scary one, is an important one, as it highlights the need to advocate for your own health.
More About Shoultz’s Diagnosis and Surgery
When her massive tumor was removed, doctors discovered during surgery that it had wrapped around one of Shoultz’s kidneys and adrenal glands; both organs had to be removed along with the tumor. In the operating room, doctors took photos and video of the 17-pound growth.
“When I woke up, and they told me it weighed that much, I remember being like, ‘I think I misheard you because of the medication I’m on,’” Shoultz says with a laugh. “That’s massive.”
Prior to her surgery, Shoultz weighed 125 pounds; afterward, she weighed in at 108 pounds. “I think everyone is so shocked that something like this could be inside of me, growing, and especially with me being so small,” she says. (Shoultz’s prognosis is not yet known.)
Understanding Sarcomas: What is a Liposarcoma?
If you receive a diagnosis of a common cancer — such as breast cancer — you might already have some sense of what that means. But what if you learn you have a sarcoma? These are much more rare, and less likely to be discussed in casual office visits or among friends. In fact, this rare and diverse group of diseases accounts for about 1% of adult tumors and about 10% of tumors in children.
“Sarcomas are rare and the cause in most patients is unknown,” Dr. Vishal Gupta, site director of radiation oncology at The Blavatnik Family – Chelsea Medical Center at Mount Sinai, tells SurvivorNet.
The National Cancer Institute defines sarcoma as “a type of cancer that begins in bone or in the soft tissues of the body, including cartilage, fat, muscle, blood vessels, fibrous tissue or other connective or supportive tissue.” There are different types of sarcoma based on where the cancer forms. For example, according to NCI, osteosarcoma forms in bone, liposarcoma forms in fat and rhabdomyosarcoma forms in muscle. There are more than 70 types of sarcoma, 50 of which are classified as soft tissue sarcoma.
The typical symptom of sarcoma is a slow-growing, painless mass — like in Shoultz’s case. But sarcoma can be hard to detect through symptoms. “Most sarcomas don’t cause many of the symptoms that may be associated with other cancer,” Dr. Dale Shepard, director of the Cleveland Clinic Taussig Cancer Institute Phase I and Sarcoma Programs, tells SurvivorNet.
Liposarcoma — a type of soft tissue sarcoma — is a rare form of sarcoma cancer. It can start anywhere in the body, according to the American Cancer Society, but they most often start in the thigh, behind the knee and inside the back of the abdomen. They occur mostly in adults between 50 and 65 years old. These tumors account for about 18% of all soft tissue sarcomas.
The Importance of Advocating For Yourself
Shoultz has an important message for anyone going through something similar to her situation: “Listen to your body,” she says, “because no one knows it better than you.”
Being your own advocate is always important when it comes to cancer care. And by doing so, you can make sure that your doctor sees you as an individual.
“One of the biggest things that I did from the very beginning was asking the right questions,” Alex Echols, a patient advocate and lymphoma survivor, tells SurvivorNet. “It’s our lives on the line.” He credits these questions with making sure that doctors took him seriously and viewed him as a partner in his treatment.
Since Shoultz was her own advocate, she’s now recovering from surgery at home, free from a 17-pound mass in her stomach. She says she’s just thankful she listened to her instincts and her gut.
“If all the tests are coming back fine and you still see changes in your body,” Shoultz says, “(then) go to your doctor.”
Contributing: Alesandra Dubin