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) - A new survey reveals Americans are not aware of what to report prior to a blood test. Only half (52 percent) believe it is very important to report use of supplements to their healthcare provider before getting a blood test.
With recent interest in the use of supplements like biotin as beauty treatments, it’s especially critical for consumers, doctors and lab personnel to talk before blood tests because very high doses of supplements could interfere with some test results.
The possibility of interference in blood testing is low, but if you’re taking high-dose biotin for hair, skin or nail health, for example, it is best to inform your doctor before a blood test. Just as you may need to fast before certain types of tests, you may need to hold off on taking supplements like biotin for at least eight hours before blood work.
The survey, commissioned by Roche Diagnostics, also found that most Americans (85 percent) expect their physician to provide complete instructions on how to prepare for a blood test.
“Many factors — from stress, to prescription medication, to vitamins — can affect blood test results, so it’s important to be proactive in communicating about medicines or supplements you’re taking rather than waiting to be asked,” said Dr. Emily Jungheim, associate professor of obstetrics and gynecology at Washington University School of Medicine in St. Louis.
Ask your healthcare provider about ways to prepare for blood tests. Here are some simple tips to follow:
* Write down all your prescription medicines the night before a blood test so you can share up-to-date information with the lab technician or your doctor.
* Also report vitamins, supplements, nutraceuticals and any over-the-counter medications.
* Know the doses of the medicines and supplements you are taking. The dose matters. You may not be aware that 5 mg of biotin per day, for example, is equal to the amount of biotin in 100 capsules of a typical daily multivitamin.
(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) - You go in for your annual visit and it goes something like this: You get weighed and measured and prodded. You see your doctor and talk about your health, maybe get a prescription refill, and most likely a referral for a screening or lab test. You walk out with the best of intentions, but you never get that test done. Sound familiar?
Many of us don't love the idea of going in for a colonoscopy or mammogram, and even the idea of a needle stick might make some of us jittery. But when it comes to cancer screenings, those tests can mean the difference between a treatable - even curable - cancer, and one that's far tougher to beat.
(For details, visit GetScreenedNow.org.)
In recent years, there's been a trend towards evidence-based medicine - looking at the evidence and deciding what works and what doesn't. The good news is that the medical evidence sometimes points to fewer tests. Here are some of the more significant changes you might notice at your next doctor visit, plus tips on how to make screenings easier on yourself.
What's new for women
If you're still getting annual mammograms, you might be able to have them less often. According to the United States Preventive Services Task Force (USPSTF), women at average risk of breast cancer need screening only every two years from ages 50 to 74. Everyone's situation is different, so talk to your doctor and together decide what's right for you.
Likewise, most women don't need once-a-year Pap tests. According to a 2012 change in guidelines, women ages 21 to 65 at average risk need this cervical cancer screening just once every three years. If you're 30 to 65, you can get a DNA test as well as a Pap, which lets you go five years between tests (if your doctor agrees). That said, you'll still want to go in for an annual wellness visit.
What's different for men
Not as much to report here, guys, but if your doctor is still ordering a prostate-specific antigen (PSA) test during your annual exam, you might want to talk about it. In 2012, the USPSTF recommended against routine PSA tests as a way to screen for prostate cancer. A high PSA level doesn't necessarily signal cancer, but could lead to unneeded treatments. While PSA test rates have been going down, a recent study found that around 40 percent of men over age 60 were still getting them.
The latest on colon screenings
If you're between 50 and 75, you probably know that you need regular colon cancer screenings. You have a growing number of options now, and they all generally involve a tradeoff between thoroughness and the length of time between screenings. In particular, more insurance companies have started to cover virtual colonoscopies (Medicare is a notable exception).
Unlike traditional colonoscopies that use a camera to look inside your colon, a virtual colonoscopy is basically a CT scan (these scans use a series of X-rays to create sharp images). Normal results on an old-style colonoscopy can often get you off the hook for 10 years; the virtual version needs to be repeated every five years.
There are also several simple lab tests that involve collecting a little stool at home and mailing it in to the lab. The newer FIT tests look at immune markers and are more sensitive than older ones. Depending on the test, these need to be done every one to three years.
How to get over your reluctance
If you're not a fan of getting tested, you're not alone. Millions of Americans aren't getting essential tests, and cancer screening rates are lowest among U.S. Latinos and Asians.
If cost is an issue, you might be happy to know that health plans under the Affordable Care Act must cover most preventive care at no cost to you (no co-pays, deductibles or coinsurance). If you have a plan that predates the 2010 law, your coverage may be different.
Here are a few simple ways you can make screenings easier for yourself
* Ahead of your annual exam, check out which exams and preventive care are recommended for you by visiting GetScreenedNow.org, a collaboration between Stand Up To Cancer and Rally Health.
* Schedule your screenings and lab tests before you leave your primary care doctor's office.
* When picking a day and time, think of how you might feel. Depending on the test, pick time of day that works best for you.
* On the day of your appointment, take someone along (for some tests you'll be sedated so you'll definitely need a driver).
* Make sure you're as comfortable as possible. If you tend to get cold, bring a wrap or take socks.
* Before you leave, ask when you can expect your results so you're not conjuring up worst-case scenarios while you wait to hear back.
* Afterward, treat yourself to your favorite little indulgence - you've earned it. Go to a movie, get a pedicure, or have a piece of pie.
Facing surgery can be a frightening, overwhelming experience. However there are things you can do prior to a procedure, such as doing research, selecting the right surgical team, asking questions, choosing a well-disinfected hospital or surgery center, selecting your surgery time and taking care of home obligations, that can go a long way toward easing your mind and avoiding post-surgery complications.
Preparing for a Safe, Successful Surgery
(Family Features) Facing surgery can be a frightening, overwhelming experience. Thousands of surgeries are performed every day and many result in the patient contracting a surgical site infection (SSI). According to the CDC, SSIs are the most common healthcare-associated infection (HAI), accounting for 31 percent of all HAIs among hospitalized patients. However there are things you can do prior to a procedure that can go a long way toward easing your mind and avoiding post-surgery complications.
Do Your Research. Learn about the procedure you will be having, including any short- or long-term side effects. Find out what the professionals recommend for the recovery process. Make sure you understand what your medical insurance covers and what your out-of-pocket responsibility will be.
Select the Right Team. Choose an experienced surgeon that specializes in the procedure you need. Do your homework on potential candidates, including learning their qualifications, specialties and amount of similar procedures performed. Pick a surgical team that you communicate well with, respects you and makes you feel at ease. Websites such as Yelp and HealthGrades can provide patient feedback on a surgeon’s performance.
Ask Questions. Since there are often several ways to perform a procedure, ask your doctor to explain the surgery. Discuss any risks, benefits and/or alternatives to the preferred method. Sometimes physicians will provide a reference patient who can tell you about their experience with the same procedure.
Contact the facility and ask about how they clean the operating rooms (ORs) and recovery areas – you want to go to the cleanest and most disinfected surgery center in your area. Just because an OR looks clean does not mean that dangerous microscopic superbugs aren’t lurking on surfaces in the room. Some hospitals use a Xenex LightStrike Germ-Zapping Robot, for example, that pulses xenon ultraviolet (UV) light to quickly destroy deadly germs and bacteria that can cause infections. Trinity Medical Center in Alabama reported a 100 percent decrease in joint (knee and hip) infections after it began using the robot to disinfect its ORs. Another hospital, Lowell General Hospital in Massachusetts, recently reported a 46 percent decrease in SSIs after utilizing a Xenex disinfection robot.
Select Your Surgery Time. Requesting a day early in the week, but not on Monday, and a time early in the day can decrease your odds of being exposed to germs and bacteria. ORs are deep cleaned each night, with quick cleans between each surgery. Since there are few surgeries on weekends, there may not be a cleaning crew available on Sunday night. Additionally, according to a UK study, the odds of death within 30 days after surgery were significantly higher the later in the week a surgery takes place.
Take Care of Home Responsibilities. Prior to surgery, get your home in order by cleaning, paying bills and running errands. Arrange for transportation to and from the hospital if anesthesia will be used.
Many factors influence the risk of getting an SSI, but patients have some control. To learn more about hospital acquired infections and how they can be prevented, visit Xenex.com/StopHAIs.
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