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:
Breast cancer. It is a simple phrase representing a complex journey thousands of women travel each year. Even during October, when Breast Cancer Awareness Month brings attention to the disease, many people don’t realize breast cancer is not just one disease; it’s extremely complex and classified into different types. To change the perception that breast cancer is just one disease, consider these tips.
There is No One-Size-Fits-All Breast Cancer
(Family Features) Breast cancer. It is a simple phrase representing a complex journey thousands of women travel each year. Even during October, when Breast Cancer Awareness Month brings attention to the disease, many people don’t realize breast cancer is not just one disease; it’s extremely complex and classified into different types. Understanding the many types of breast cancer is important – not just for the 1-in-8 women who will be diagnosed in their lifetime, – but for those who love them, too.¹
Laura Ross knows first-hand. She was diagnosed with triple-negative, stage I breast cancer when she was 41 years old.
“No one in my family had breast cancer and I had no information,” Ross said. “I had not even heard breast cancer had different types until the results came back from my biopsy.”
Unprepared and in shock, she relied heavily on her support circle, which in addition to her doctor and healthcare team, helped her learn more about her diagnosis. Empowered by this information, Ross had the confidence to make informed treatment decisions with her doctor.
You or someone you love may be affected by breast cancer in your lifetime and have to help make a treatment decision. To change the perception that breast cancer is just one disease, Living Beyond Breast Cancer, Genentech and ThirdLove created the “Not One Type” campaign, which offers these tips:
During October – and year-round – arm yourself with knowledge about the different types of the disease and use that information to be a more empowered patient or caregiver. Visit NotOneType.org to learn more.
Photo courtesy of Getty Images
¹ American Cancer Society. Cancer Facts & Figures 2018. Atlanta: American Cancer Society; 2018.
² Kohler BA, et al. Annual Report to the Nation on the Status of Cancer, 1975–2011, Featuring Incidence of Breast Cancer Subtypes by Race/Ethnicity, Poverty, and State. J Natl Cancer Inst 2015;107(6):djv048.SOURCE:
Melanoma is a skin cancer many of us are familiar with. But have you heard of a skin cancer called cutaneous squamous cell carcinoma (CSCC)? If not, you might be surprised to learn that CSCC is actually one of the most common skin cancers in the world – even more common than melanoma with an estimated 700,000 new cases diagnosed in the U.S. annually. CSCC can also be a deadly skin cancer. Every year, an estimated 7,000 people in the U.S. die of CSCC.
(BPT) - Most of us look forward to the balmy breezes and cheerful sunshine brought about by spring and summer, especially those of us living in climates where winter is long, gloomy and bitterly cold. Yet as we get our shorts, polo shirts and swimsuits out of storage, it’s important to remind ourselves to stay sun smart and vigilant against skin cancer.
Melanoma is a skin cancer many of us are familiar with. But have you heard of a skin cancer called cutaneous squamous cell carcinoma (CSCC)? If not, you might be surprised to learn that CSCC is actually one of the most common skin cancers in the world – even more common than melanoma with an estimated 700,000 new cases diagnosed in the U.S. annually.
CSCC can also be a deadly skin cancer. Every year, an estimated 7,000 people in the U.S. die of CSCC. And in the southern part of the U.S., the number of deaths from CSCC may actually be higher than deaths from melanoma.
“The good news is that CSCC is usually highly treatable when detected early,” notes Dr. Sunandana Chandra, a medical oncologist at the Robert H. Lurie Comprehensive Cancer Center Northwestern University. “That’s why it is important to know about CSCC, so you can take the necessary precautions to protect yourself, know how to identify early signs of the cancer, and to understand your treatment options if it progresses. Being vigilant about your skin and reaching out to your doctor early with any concerns will allow you to consider more treatment options and possibly have better outcomes.”
So what do you need to know about CSCC? Here are three important tips:
If you think you or someone you know may have CSCC, contact a doctor and visit SkinCancer.org.
(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:
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