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) - When Fern started coughing over and over again, she was repeatedly diagnosed with bronchitis and recurring pneumonia. However, both Fern and her husband Philip knew that something wasn’t quite right. Fern and Philip’s persistence led to Fern’s diagnosis of nontuberculous mycobacterial (NTM) lung disease, a progressive and chronic condition caused by bacteria that are common in the environment.
“It took over six years for Fern to be accurately diagnosed with NTM lung disease and every day leading up to the diagnosis was a challenge — from doctors telling us no treatment was needed to the day-to-day reality of respiratory therapies,” said Fern’s husband, Philip. “But the biggest challenge by far was not being able to definitively state what she had and not knowing what plan of action to pursue.”
About NTM Lung Disease
Nontuberculous mycobacterial lung disease is an infection caused by bacteria that are aerosolized, which means they exist in water particles that float in the air and are breathed in. NTM bacteria is common in the environment and can be found places such as tap water, showerheads, steam from hot tubs, mist and soil from parks and gardens. In fact, one study across 25 states showed that
NTM bacteria was found in nearly eight out of ten water samples.
Everyone comes into contact with NTM bacteria during their daily lives. However, not everyone is at risk of getting NTM lung disease. Most people do not become infected because their lungs are healthy enough to clear the bacteria. But people who have conditions such as bronchiectasis, chronic obstructive pulmonary disease (COPD) and asthma are more likely to develop NTM lung disease, because conditions that cause damage to the lungs make it difficult to clear NTM bacteria.
Since the symptoms of NTM lung disease, such as cough, fatigue and shortness of breath, are similar to those of other lung conditions, many people who have it may not even know it for months or sometimes years. NTM lung disease is sometimes misdiagnosed or not diagnosed at all because many people with symptoms think it’s due to a lung condition they already have.
Talk to a Doctor about NTM Lung Disease
Over time, NTM lung disease symptoms can get worse, and in some cases, the disease can cause severe, even permanent damage to the lungs, so early detection and management is crucial. If you think you or a loved one may have NTM lung disease, talk to your doctor about getting tested and visit AboutNTM.com for additional information.
Resources for NTM Patients and Caregivers
Throughout the diagnosis and treatment journey, Fern and Philip met patients from across the country who had similar experiences. Together, Philip and Fern started a non-profit organization, NTM Information & Research (NTMir), to save and improve lives through research, education, early detection and improved treatments for people with NTM lung disease. Over the past ten years the organization has grown to be a significant resource for patients with NTM lung disease and their caregivers as well as clinicians who treat the condition.
“When Fern was first diagnosed, information about NTM lung disease was scarce and we knew the best way to arm ourselves was to find out as much about NTM as possible,” Philip said. “Learning more about the disease, starting conversations with doctors, getting support from those around you and others with the same condition — those are all imperative to patients and caregivers alike.”
NTMinfo.org provides a library of tools and information, as well as an online community, for additional support. Resources can also be found at AboutNTM.com, such as a discussion guide to help prepare for the next doctor appointment, real patient stories and information about NTM lung disease.
(BPT) - Whether you’ve helped a family member through treatment or are facing a diagnosis yourself, hearing the word “cancer” can make people feel powerless and overwhelmed. For many, the best way to regain control is to be as educated as possible. This desire to be informed can lead to an endless and exhausting search for relevant, trustworthy, and relatable information.
"People with cancer are overwhelmed by information from many disparate sources, however, they need to absorb and retain what’s important to them. Curated information that is specific to their individual situation allows them to focus without having to sift through irrelevant and often inaccurate content."
Chief Strategy and Alliance Officer
That’s why the Janssen Pharmaceutical Companies of Johnson & Johnson collaborated with leading advocacy organizations to develop Cancer.com, a new online destination for people impacted by cancer. Cancer.com offers educational information, a powerful coaching tool, and links to relevant blogs and social channels, all in one place.
You can create a profile that serves up content tailored to you. This includes information for your cancer type and where you are in your cancer experience: just diagnosed, undergoing treatment, or living in remission.
Further customize your Cancer.com experience by learning more about topics that interest you. Cancer.com topic areas were created based on what patients and caregivers search for the most, including:
“Every person’s journey through cancer is different, which makes personalized information an essential part of the patient’s care plan. We want to help individuals find the combination of educational and emotional support resources that will give them a sense of control.”
Hildy Dillon, MPH
Vice President, Education and Support Programs
Cancer Support Community
Cancer.com houses information from key patient advocacy groups that collaborated on the site: the American Cancer Society, CancerCare, and Cancer Support Community. It is also a gateway to the educational resources and tools featured on these groups’ websites. Additionally, Cancer.com features a wealth of articles and links to content from reliable sources that include government agencies, medical centers, and news and academic media.
"As a trusted resource for cancer information, the American Cancer Society is pleased to contribute its expertise and content to ensure people affected by cancer receive the most up-to-date information to make informed decisions about their health."
Senior Vice President, Cancer Control Programs and Services
American Cancer Society
Beyond trusted, personalized, and compelling content, Cancer.com features interactive tools designed with your needs in mind:
(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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