The ESsentials for
People Living with
Epithelioid Sarcoma

The ESsentials for People Living with Epithelioid Sarcoma

Searching for information about ES?

A diagnosis of epithelioid sarcoma—sometimes referred to as ES by patients and doctors—can be scary and confusing.

Learn the ESsentials about this ultra-rare subtype of soft tissue sarcoma so that you can have a better level of understanding about the disease so you can make informed decisions in tandem with your healthcare team.

Even though ES is ultra-rare, you are not alone. Experience the stories of people with ES as they navigated their cancer journeys.

Meet Maria: A Real-Life Story of ES Survivorship

In 2008, Maria Voermans was a single mother of two young daughters and working at a local veterinary practice in Wisconsin. One day, she felt a sudden pain in her upper right thigh.

After the pain persisted for months, Maria visited a sports medicine orthopedic specialist who ordered an MRI and found a mass in her upper thigh. She was referred to an oncologist, and on her youngest daughter’s third birthday, a biopsy confirmed her worst fear: the mass was an ultra-rare form of cancer called proximal-type epithelioid sarcoma (ES), stage three.

Like most people, Maria knew very little about sarcoma. The only knowledge she had was from the veterinary practice where she worked, where limb amputation was common in pets with sarcoma. Maria felt numb after receiving her diagnosis and questioned if she would live to experience future life milestones with her daughters.

“My hope came from my daughters. I wasn’t sure that I would see their next birthday or their next Christmas,” says Maria. “I couldn’t imagine a life for them without their mother and so every day, as hard as it was, I pushed forward with the goal of seeing that next big milestone.”

Fortunately, her doctor referred her to a sarcoma specialist who had treated one other patient with this type of rare cancer before. Maria’s treatment involved rounds of chemotherapy, radiation and ultimately surgery to remove the tumor. She rallied her support system of friends and family around her, who helped her with meals and taking her children to activities. Ten years later, as of April 2019, the cancer has not returned.

Maria’s experience with ES inspired her to work in patient support services for her local cancer center, where she also received treatment. Today she educates other people diagnosed with cancer who are undergoing treatment or post-treatment. Maria believes her personal experience with cancer makes her more empathetic toward the patients she supports.

“I have really been fortunate enough to find a new career that helps me help patients,” says Maria. “I feel it’s my duty to help others in that same capacity.”

Today, Maria values the time she spends with her family and experiencing life milestones with her daughters – ones that she once worried about missing. Maria encourages everyone faced with cancer to seek a specialist and be their own advocate. She hopes her story will show others that it is possible to live a full life after ES.

Searching for information about ES?

A diagnosis of epithelioid sarcoma—sometimes referred to as ES by patients and doctors—can be scary and confusing.

Learn the ESsentials about this ultra-rare subtype of soft tissue sarcoma so that you can have a better level of understanding about the disease so you can make informed decisions in tandem with your healthcare team.

Even though ES is ultra-rare, you are not alone. Experience the stories of people with ES as they navigated their cancer journeys.