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:
(BPT) - Bobby Barrera’s career as a Marine ended abruptly at age 21. While in Vietnam, on his first mission, a land mine explosion took his right hand at the wrist and left arm at the shoulder, and left him with severe burns over 40 percent of his body and face.
Coping with the physical challenges of his injuries and struggling to find a new purpose for life was almost easy compared to dealing with the psychological impact of war trauma: something that would remain with Bobby for the next 40 years.
Bobby went on to marry and have a family. His children had children, and he created a fulfilling and meaningful life for himself. He returned to college to earn a master’s degree in guidance and counseling. For nearly four decades, Bobby counseled veterans with mental health challenges caused by war and volunteered with DAV (Disabled American Veterans), a veterans service organization that helps veterans of all generations get the benefits and services they’ve earned. He went on to become the national commander of DAV in 2009. What Bobby didn’t realize — or want to admit — was that for more than 40 years, he was suffering from post-traumatic stress disorder (PTSD).
It wasn’t until Bobby and his wife moved to San Antonio, Texas, to retire that his PTSD symptoms became overwhelming. After moving, Bobby felt immediately lost. Being new in town, losing his network of friends, no longer working and coping with chronic pain triggered long-suppressed symptoms of PTSD. Soon, the nightmares began. Then came mood swings, increased anxiety, and feelings of isolation and hopelessness — and eventually, thoughts of suicide.
Bobby’s wife pushed him to seek help — which led to a PTSD diagnosis. He questioned how he could have overlooked his own signs of PTSD for so many decades, while helping countless other veterans who struggled with it.
PTSD symptoms are caused by experiencing traumatic events and not by an inherent individual weakness. Roughly 15 percent of Vietnam veterans are impacted by PTSD, and an estimated 20 percent of recent war veterans have symptoms of PTSD or depression. It can lead to a higher risk for unemployment, homelessness or suicide.
Bobby is learning how to cope with his diagnosis. He is meeting more people, getting involved at church and spending time with his family. He began to volunteer again. His recovery is ongoing. Bobby credits his wife for encouraging him to ask for help and believes that doing so gave him yet another chance at life.
If you are struggling with symptoms of PTSD, you are not alone. Resources are available at www.DAV.org/veterans/resources. If your situation is critical, please call the Veterans Crisis Line at 1-800-273-8255.
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