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) - Each year, more people die of lung cancer than any other form of cancer — more than colon, breast and prostate cancers combined. The American Cancer Society estimates of the 224,000 new cases of lung cancer diagnosed each year, 155,000 will succumb to the disease.
Many have heard the statistics about lung cancer, but for those who have lived through it, or who have a friend or loved one battling the disease, these numbers are even more personal and frightening. The low five-year survival rate (five to 14 percent) for late-stage lung cancer patients makes the search for a way to treat this deadly disease all the more urgent.
To beat cancer, early detection is critical. Scientific research over the past several decades has revealed that cancer is a disease primarily caused by changes — or mutations — in the genes. This discovery has led to a major shift in how early cancer can be detected and treated. Now, researchers are able to identify mutations in the genetic code that are most likely to cause potentially deadly cancers. This has led to the development of new testing technology and drugs that target those specific mutations.
This approach is in stark contrast to traditional detection methods that are limited in their ability to test for a small number of specific mutations linked to only one possible treatment. This painstakingly long process can take several weeks to identify an effective treatment.
In a matter of days, modern techniques using next-generation sequencing technology can save valuable time by avoiding the need to run multiple tests by simultaneously screening tumor samples for multiple mutations and multiple potential therapies. The new technology also reduces the likelihood of subjecting patients to unnecessary and invasive secondary biopsy procedures.
New advancements in early detection and treatment
The U.S. Food and Drug Administration (FDA) recently approved the Oncomine(TM) Dx Target Test, a first-of-its-kind genetic screening solution that can detect multiple gene mutations associated with non-small cell lung cancer (NSCLC) from a single tissue sample. The test has also been approved to aid in selecting which specific FDA-approved NSCLC treatment the patient may be eligible for.
Take action and talk to your doctor
A recent survey by the Journal of Precision Medicine showed that only about a third of patients and caregivers had a good understanding of genomic tools for cancer detection. That’s why talking to a doctor, loved ones and others about new techniques like sequencing-based tests to help inform more effective treatment options is important. Doctors and healthcare networks have a responsibility to their patients to provide the most effective innovations so patients receive the best care possible.
(BPT) - In 2012, Donna Fernandez was diagnosed with stage 4 lung cancer—a disease that claims the lives of more than 150,000 men and women in the United States each year. She went through multiple rounds of various medicines, but her disease progressed. Her doctor offered her a choice: start a new chemotherapy regimen or enroll in a clinical trial for a new type of treatment called immunotherapy.
At the time, Donna was not familiar with clinical trials or immunotherapy, but now, five years later, she is a passionate advocate for clinical trial participation and the power of immunotherapy and serves as an “ImmunoAdvocate” for the Cancer Research Institute, a nonprofit organization dedicated to funding lifesaving immunotherapy research and discovery.
The basics of cancer immunotherapy clinical trials
Cancer immunotherapy treatments harness and enhance the innate powers of the immune system to fight cancer. Immunotherapy is widely considered to be the most promising new cancer treatment approach since the development of the first chemotherapies in the 1940s. Currently, only six immunotherapies have been approved to treat cancer, but there are hundreds of new and promising cancer immunotherapy treatments in development—only available to clinical trial patients.
Clinical trials are research studies that enable scientists and physicians to assess new treatments. For people living with cancer, clinical trial participation may have the potential to extend and improve quality of life.
“Many patients don’t know where to start when it comes to clinical trials and don’t know if or when to discuss them with their physicians,” said Donna. “I was surprised to learn that only 3 percent to 6 percent of cancer patients who are eligible for clinical trials participate, which means that more than 90 percent of cancer patients may be missing out on potentially lifesaving new treatments.”
Navigating clinical trials to find the right one
“We aim to help patients kick-start the clinical trial process. With hundreds of immunotherapy clinical trials under way at any given time, understanding eligibility criteria is an important first step for patients when searching for an appropriate clinical trial for their unique set of circumstances,” said Dr. Jill O’Donnell-Tormey, chief executive officer and director of scientific affairs at the Cancer Research Institute. “Cancer immunotherapy clinical trials are critical to bring new treatments based on cutting-edge science to more patients with more types of cancer, and may represent the greatest hope for patients currently facing the disease.”
Matching patients with the right clinical trial can be a complicated process, which is why the Cancer Research Institute works to provide the Cancer Immunotherapy Clinical Trial Finder as a free resource to help patients and their caregivers quickly search for clinical trials that match a specific cancer diagnosis, stage, and treatment history. The Clinical Trial Finder has a brief questionnaire to help narrow the list of potential trials and patients are also able to speak confidentially with a Clinical Trial Navigator about the clinical trial process and even opt-in to receive updates as new trials are added.
Key questions to ask before enrolling in a clinical trial
Donna encourages all cancer patients to ask their physician about their eligibility for open cancer immunotherapy clinical trials for their type of cancer. It is important to ask about the short-term and long-term risks and benefits compared to standard treatment, as well as the clinical trial treatment protocol and site location, any potential impact on daily life, and ask about associated costs related to the trial, tests or treatments. In addition to providing this valuable information right at the start, physicians are also able to help patients identify resources that might be able to assist with certain barriers to participating in clinical trials—like costs and travel expenses.
“Today, cancer immunotherapy clinical trials have the potential to provide new hope to many patients facing the same situation that I was—a diagnosis that was previously considered incurable,” said Donna. “By participating in an immunotherapy clinical trial, I had the opportunity not only to access a lifesaving treatment, but also to help advance research to bring new immunotherapies to more patients in the future. I hope that more patients participate, gain access to revolutionary research and help uncover cures for all cancers through immunotherapy research.”
For more information on cancer immunotherapy and how to match with an open clinical trial, visit the Cancer Research Institute Cancer Immunotherapy Clinical Trial Finder at https://www.cancerresearch.org/patients/clinical-trials.
(BPT) - Designed to evaluate the safety and effectiveness of new treatments, clinical trials are the only way medical advances can move knowledge and science forward. In regard to knee pain, clinical trials offer the newest and latest ideas on finding better ways to treat pain.
People participate in clinical trials for a variety of reasons. For Debra Tongue of Baton Rouge, Louisiana, a clinical trial provided a chance for a life-changing opportunity. An active mother of three and grandmother of two, Tongue was devastated when she tore her meniscus — a tissue pad between the thigh and shin bones. As a personal fitness trainer and avid sports enthusiast, Tongue went from a very high activity level of biking, hiking and running to having immense knee pain during any kind of physical activity. She underwent a meniscectomy, the surgical removal of the torn meniscus, but constant pain and swelling in her knee persisted. She was told she was too young for a knee replacement.
At age 46, Tongue made the decision to participate in a clinical trial to receive the NUsurface Meniscus Implant — the first “artificial meniscus” designed to replace the damaged one in patients like Tongue with persistent knee pain due to injured or deteriorated meniscus cartilage. The implant, which is made of medical grade plastic and inserted into the knee through a small incision, can serve as an opportunity to treat knee pain and keep patients active until knee replacement surgery is a viable option. The clinical trial is part of regulatory process to gain permission to allow the device to be distributed in the U.S.
“After receiving the NUsurface Meniscus Implant and undergoing a 12-week rehabilitation program, I felt back to normal and ready to take on the world,” Tongue says. “In fact, I was even able to go on a trip to India with girlfriends for a two-week retreat at the foothills of the Himalayan Mountains. The NUsurface Implant gave me a second chance to enjoy life the way I did before.”
Are you suffering from knee pain and considering enrolling in a clinical trial? Here are three reasons it may be the right choice for you:
1. You’ll get access to treatment not yet available in the U.S.
If you enroll in a trial, you could have access to treatments that are not yet approved by the U.S. Food and Drug Administration (FDA), but could potentially work better than existing options to reduce pain or manage a disease.
2. You’ll receive high-quality care.
There are strict rules for clinical studies that have been put into place by the National Institute of Health and the FDA. In addition, all U.S. clinical trials must be overseen by an Institutional Review Board (IRB) to make sure patient risks are as low as possible and that proper trial procedures are followed. Patients in clinical trials are monitored closely by their doctor using advanced diagnostic techniques, and information about you will be carefully recorded and reviewed.
3. You’ll help advance science.
Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future who have their same condition. By participating, you can provide researchers with the information they need to continue developing new procedures, medical devices and treatments.
To be eligible for the NUsurface Meniscus Implant clinical studies, you must be between the ages of 30 and 75, have pain after medial (the inside of the knee) meniscus surgery at least six months ago. To find a study site near you, visit www.activeimplants.com/kneepaintrial.
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