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:
While all of us have experienced the dull pain of a headache and some know the recurrent pulse and throbbing of migraine, few people can understand the severity of pain associated with cluster headache, also known as “suicide headache.”
(BPT) - While all of us have experienced the dull pain of a headache and some know the recurrent pulse and throbbing of migraine, few people can understand the severity of pain associated with cluster headache, also known as “suicide headache.”
What is cluster headache?
Cluster headache is an extremely painful primary headache disorder characterized by recurring unilateral attacks, or attacks that occur on one side of the head. It is called “cluster” headache because headaches typically occur in bouts (or “clusters”) for 6 to 12 weeks, often at the same time each year or day, and are more frequent at night. It begins as sharp pain centered at the eye, temple or forehead, and can be as brief as 15 minutes or as long as several hours. Attacks can strike up to 8 times a day.
The condition, which affects about one to two people in every 1,000, predominantly occurs in males, with symptoms typically manifesting by the age of 30. Those at greater risk of cluster headache include heavy smokers and individuals with a family history of the condition.
“Cluster headache is one of the most painful conditions an individual can experience, known for being potentially more excruciating and debilitating than migraine,” said Stephen Silberstein, M.D., from the Jefferson Headache Center at Thomas Jefferson University in Philadelphia, Pennsylvania. “Sadly, patients diagnosed with cluster headache commit suicide twenty times more than the national average as the pain can be described as unbearable.”
Diagnosis and treatment
Unfortunately, diagnosis of cluster headache may be delayed significantly due to patients and physicians mistaking the end of a bout for resolution of a separate, standalone condition.
Historically, even after the proper diagnosis is made, there have been very few viable therapies for cluster headache, making prevention and treatment strategies a challenge. While the exact cause of cluster headache is unknown, it is typically treated with injectable sumatriptan, a combination of oxygen and various drugs and/or nerve blocks. These methods are associated with barriers to use including a myriad of pharmaceutical side effects. Not surprisingly, 79 percent of patients have been dissatisfied with available treatment options.
Today, patients now have a novel treatment option called gammaCore®(nVNS). gammaCore, the first non-invasive vagus nerve stimulation therapy applied at the neck for the acute treatment of pain associated with migraine and episodic cluster headaches in adult patients, offers a way to treat symptoms without many of the side effects and dose limitations observed with commonly prescribed treatments or the need for invasive and costly procedures. Patients prescribed gammaCore can have reliable access to treatment for up to four cluster attacks per day for 30 days.
“gammaCore has shifted the paradigm by allowing patients to self-administer non-invasive vagus nerve stimulation therapy for acute treatment of cluster headache, resulting in the reduction of pain,” notes Dr. Silberstein. “gammaCore’s efficacy and safety profiles, along with its self-administered mode of delivery, have the potential to not only reduce the side-effect burden associated with other medications but also bring much needed relief to patients.”
For more information on cluster headache and treatment with gammaCore (non-invasive vagus nerve stimulator), please visit http://gammacore.com/.
Important Safety Information
gammaCore (non-invasive vagus nerve stimulator) is indicated for the acute treatment of pain associated with episodic cluster headache and migraine in adult patients.
gammaCore is available by prescription only. U.S. Federal Law restricts this device to sale by or on the order of a licensed healthcare provider.
 *Survey conducted in October 2016 to assess the impressions and perspectives on current treatments and interest in new acute treatment options. A total of 291 subjects participated in the survey, with 177 of them suffering from episodic cluster headaches and 111 suffering from chronic cluster headaches, and 3 patients refrained from answering this question.
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