The Rarest of the Rare
There is little information available about epithelioid sarcoma. Patients, advocates, doctors and researchers across the United States are aiming to educate people about this ultra-rare cancer and the unmet need for an effective, tumor-specific treatment. Consider these facts about ES.
The Rarest of the Rare
What to know about a cancer you may not have heard of
(Family Features) A woman celebrating her 40th birthday, a young boy starting second grade or a college grad about to begin his career. All three could develop a rare form of cancer known as epithelioid sarcoma (ES), a form of soft-tissue sarcoma.
What are Soft-Tissue Sarcomas and What is Epithelioid Sarcoma?
How Rare is Rare?
According to the American Cancer Society, a rare cancer is defined as fewer than six new diagnoses per 100,000 people per year.
ES is an ultra-rare cancer. According to available epidemiology and case reports, it is estimated about 600 people are properly diagnosed in the U.S. and Europe each year.
What are the Most Common Types of ES and How Do They Impact Diagnosis?
Dealing with a Diagnosis?
For people faced with a sarcoma diagnosis, it’s important to get a second opinion from a sarcoma specialist. These specialists have extensive knowledge of STS and can determine what form of sarcoma one may have, what stage it is and the best course of treatment. The specialist may confirm the diagnosis with a physical examination, a scan or a tissue sample (biopsy) of the area.
It’s common to feel a range of emotions after a diagnosis of ES, according to Clear View Health Partners, including:
What Treatment Options are Available?
For patients with early stage ES, many elect to have surgery to remove the tumor, which may precede or be followed by radiation therapy or chemotherapy treatment, according to the Journal of Clinical and Aesthetic Dermatology. If the cancer returns or spreads, a patient may undergo radiation therapy and chemotherapy. New treatment options are being studied through clinical research, which is why seeking a specialist in the field is important if one is faced with a diagnosis.
As with many cancers, early detection is important and can increase survival or successful treatment. Typically, the distal form of ES is associated with more favorable survival rates than the proximal form.
4 Things to Do to Address ES Today
1. Don’t ignore your bumps and lumps, see a doctor as soon as possible.
2. Learn more about epithelioid sarcoma and its symptoms.
3. Seek a second opinion.
4. Find support if you’re faced with a diagnosis.
An ES Diagnosis Journey
In the spring of 2008, Maria Voermans’ 4-year-old daughter requested an “airplane ride,” and as Voermans lifted the young girl up with her legs, she had to make an “emergency landing” because of some sudden and significant pain in her upper right thigh.
After a few months, the pain persisted. Voermans continued to jog and play sand volleyball, thinking nothing of it. At the recommendation of her primary care physician, she took some anti-inflammatories and tried to rest, which wasn’t easy to do as a single mother of two young children.
Two more months went by and her leg caused increasing problems. She could feel something in her leg, but never considered it a “lump” because it was not visible on the outside. Voermans took matters into her own hands and visited a sports medicine orthopedic specialist for further testing.
An MRI found a mass in her right leg and she was referred to one of the few musculoskeletal oncologists in Wisconsin, her home state. He ordered a biopsy, which on Voermans’ youngest daughter’s third birthday confirmed her worst fear: it was a rare form of cancer called proximal-type epithelioid sarcoma, and it was stage three. Her biggest concern was not living to experience future holidays, birthdays, graduations and other life milestones with her daughters.
Voermans underwent chemotherapy, radiation therapy and had surgery to remove the tumor. As of July 2018, Voermans reports the cancer has not returned.
Today, she’s a wellness coordinator supporting other people diagnosed with cancer who are undergoing treatment or post-treatment. She’s able to use her own cancer journey to provide empathy to others, and it’s brought satisfaction to the whole experience.
Content courtesy of Epizyme, Inc.
Photo courtesy of Getty Images (Doctor talking to man)SOURCE:
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