Although rare cancers don’t occur often, they can affect people of all ages and genders. Greater awareness of rare cancers may lead to earlier diagnosis and management, and potentially better survival rates. Consider these facts about soft tissue sarcomas, one type of rare cancer.
Understanding Rare Cancers
Four facts to know about one type of rare cancer, soft tissue sarcomas
(Family Features) Although rare cancers don’t occur often, they can affect people of all ages and genders.
A rare cancer is defined as fewer than 15 new diagnoses per 100,000 people per year, according to the National Cancer Institute (NCI). Additionally, as noted by the American Cancer Society (ACS), the 5-year survival rate is lower for people diagnosed with a rare cancer than for people living with more common cancers. Greater awareness of rare cancers may lead to earlier diagnosis and management, and potentially better survival rates.
If you have recently been diagnosed with STS, it’s important to ask your doctor for more information about the specific sub-type you have. For example, if you received a diagnosis of undifferentiated sarcoma, ask your doctor for an integrase interactor-1 (INI1) test to see if you have a rare STS called epithelioid sarcoma (ES). (See sidebar for more on ES.)
Learning More About Epithelioid Sarcoma
A rare type of STS, epithelioid sarcoma (ES) accounts for less than 1% of all STS, which themselves account for approximately 1% of all cancers, according to research published in “Archives of Pathology & Laboratory Medicine.” ES can present as a lump or sore on the skin.
Notably, more than 90% of ES tumors do not express the INI1 protein, which when present acts to suppress tumor growth. INI1 loss plays an important role in the diagnosis of ES, according to researchers with “The American Journal of Surgical Pathology.”
Data from the NCI indicates that approximately 150-200 people in the United States are diagnosed with ES each year. Research published in “The Journal of Clinical and Aesthetic Dermatology” found the disease often occurs in young adults in their 20s and 30s. Because most ES patients are adolescents and young adults, there is a gap in the unique psycho-social needs for this patient population, including resources for patients who miss school while undergoing treatments, as well as fertility considerations later in life.
If you or someone you love is living with ES, you can find resources, information and the real-life perspective of an ES survivor at ESsentialsforES.com.
Content courtesy of Epizyme, Inc.
Photo courtesy of Getty ImagesSOURCE:
One in eight U.S. women will develop invasive breast cancer in their lifetime. The treatment of invasive breast cancer should be personalized because what is best for one woman may not be right for another. If you have breast cancer, it's important to take an active role in your health by learning about your available treatment options. An ongoing, collaborative discussion with your doctor is key in determining what treatment option best fits your individual needs.
(BPT) - As a commercial airline pilot with nearly 30 years of experience, Diane Sandoval, 50, is no stranger to making difficult decisions. However, she faced one of her toughest challenges not in the skies, but when she discovered a small lump in her left breast during a self-examination. Her worst fear was confirmed after a visit to her doctor when she was diagnosed with early-stage breast cancer.
Following an inconclusive mammogram and ultrasound, Sandoval learned she had several small tumors. She underwent a mastectomy to remove the tumors followed by breast reconstruction, putting her piloting career on pause.
The next big question was whether she should receive chemotherapy or not. Her physician recommended a genomic test — the Oncotype DX Breast Recurrence Score test. This tool has been proven to determine whether chemotherapy will be beneficial for individuals recently diagnosed with early-stage breast cancer. The test provides a personalized score based on the biology of the patient’s tumor that can help tailor treatment decisions for their individual cancer. Recent results from the largest breast cancer study ever conducted, called TAILORx, confirmed that the test clearly identified the 70 percent of women with early-stage breast cancer who receive no benefit from chemotherapy, as well as the remaining 30 percent of women for whom chemotherapy can be life-saving.
Sandoval is one of the nearly 1 million women who has put chemotherapy to the test with this genomic test. Her score confirmed that her risk of experiencing a breast cancer recurrence was low and she would not benefit from chemotherapy. As a result, she felt confident that she could forgo chemotherapy and its associated side effects. Subsequently, she was able to resume her career as a pilot and her active lifestyle.
She recently joined a campaign called “Put Chemo to the Test” to raise awareness of the Oncotype DX test and encourage women recently diagnosed with early-stage breast cancer to ask their doctor to order it before finalizing their treatment plan.
“I hope to help women with early-stage breast cancer better understand their treatment options by raising awareness of this test and how it can determine whether they are part of the majority of patients who may be spared chemotherapy and its well-known side effects or are among the important minority of patients who could receive life-saving benefit from chemotherapy,” said Sandoval.
One in eight U.S. women will develop invasive breast cancer in their lifetime. The treatment of invasive breast cancer should be personalized because what is best for one woman may not be right for another. If you have breast cancer, it's important to take an active role in your health by learning about your available treatment options. An ongoing, collaborative discussion with your doctor is key in determining what treatment option best fits your individual needs. Below are a few questions to ask your doctor:
Breast cancer patients and caregivers can visit ChemoYesorNo.org to download the full physician discussion guide and learn more about the test.
“I want women who were recently diagnosed with early-stage breast cancer to know that there is no one-size-fits-all treatment approach,” said Sandoval. “The test gave me the confidence I needed to forgo chemotherapy, which has allowed me to continue to enjoy my life with my husband. Ask your doctor to order this genomic test before finalizing your treatment plan.”
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:
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