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Understanding Rare Cancers

12/23/2019

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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.  

  1. There are more than 50 types of soft tissue sarcomas (STS). STS account for about 1% of all cancers and affect soft tissues such as muscle, fat, nerves, blood vessels and skin. Although STS can be found in any part of the body, they are often in the arms or legs, internal organs, the back of the abdominal cavity or in the trunk, head and neck area.

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.)

  1. STS can be visible or invisible depending on location. STS may appear as painless bumps under the skin, usually on arms or legs. Some sarcomas begin in the abdomen and typically don’t show symptoms until they grow and press on nearby organs, nerves, muscles or blood vessels. When this occurs, symptoms may include pain and trouble breathing.
  1. Early diagnosis can help inform disease management. As with other types of cancer, early diagnosis of STS is key, as earlier treatment may result in more favorable outcomes. Because other conditions can cause similar symptoms, it’s important to check with your doctor if you are experiencing any of the warning signs listed above. If your doctor decides it’s best to “watch and wait,” consider developing a six-week follow-up plan in partnership with your health care team if your symptoms have not improved.
  1. Seeking care from a specialist is key. Given the rarity of STS, finding a sarcoma specialist who understands the complexity of this rare disease and can help determine which treatment option is best for you is important. Treatment options depend on multiple factors, including your overall health, the location and type of tumor, its size and whether the disease has spread elsewhere in the body. STS are typically treated with a combination of options including chemotherapy, radiation therapy and surgery. A specialist may also speak to you about participating in a clinical trial where investigational therapies in STS are being studied.

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 Images

SOURCE:
Epizyme

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There is No One-Size-Fits-All Breast Cancer

9/20/2018

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There is No One-Size-Fits-All Breast Cancer

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:

  1. Understand the basics. Breast cancer is classified into different types based on the unique characteristics of each tumor (size, lymph node status, stage and subtype, among others). The tumor’s size, the status of whether the cancer is in the lymph nodes and the cancer’s stage, which indicates whether or not it has spread, are important factors in helping determine a diagnosis. The subtype, which is determined by studying the cancer cells using diagnostic tests, more specifically defines the type. Some common breast cancer subtypes include hormone receptor-positive, HER2-positive and triple-negative. These are example subtypes. A patient could also have a combination of subtypes, and/or other factors contributing to cancer growth.
  1. Ask your doctor specific questions. If you or a loved one is faced with a diagnosis, knowing some questions to ask a doctor makes all the difference. Consider these questions to start:
    • How large is the tumor?
    • Has the cancer spread to the lymph nodes?
    • What is the stage?
    • What is the HER2 status? Hormone receptor status?
    • Why do you recommend this particular treatment plan? Are there other treatment options to consider?
    • Can you explain what these medicines do to the cancer in the body?
    • What are the common side effects of treatment?
  1. Pass it on. Share this information with a loved one or friend. Understanding that breast cancer is not a one-size-fits-all-disease can help those directly affected by breast cancer and those who may be impacted in the future make more informed decisions.

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:
Genentech

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Don't let the summer sun blind you to this lesser-known skin cancer

7/6/2018

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Don't let the summer sun blind you to this lesser-known 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.



(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:
  1. Take a Closer Look at Your Skin. Since early detection is key, it’s important to know your skin and what to look for. As a precaution, the Skin Cancer Foundation recommends that adults check their skin monthly and schedule an annual dermatologist visit for a full-body skin exam. CSCC typically appears on sun-exposed parts of the body, such as the face, head and neck, and can take several forms, including rough or scaly red patches, raised lumps, open sores or wart-like growths. If you notice an unusual spot on your skin, be sure to schedule an appointment with your doctor immediately.

  2. Know the Stats, Know Your Risk. Exposure to harmful UV rays is the main cause of CSCC, but there are also certain groups of people who are at higher risk. Men are three times more likely than women to be diagnosed with CSCC, and the cancer tends to occur more frequently in elderly patients ages 65 and older. Also, those living in the southern parts of the U.S. should be particularly thoughtful about how much sun exposure they are getting.

  3. Involve Your Doctors and Ask the Right Questions. If you think you have CSCC, don’t wait. Talk to your doctor right away. Often CSCC can be easily cured in its early stages with the help of a dermatologist or Mohs surgeon. However, if the CSCC progresses and grows bigger or spreads, a multidisciplinary team of healthcare providers may be needed to help assess the situation and work with you to figure out your options. This team may include your original dermatologist or Mohs surgeon plus additional physicians and surgeons from other specialties. Good questions to ask your healthcare team when it comes to CSCC include: What treatment options can I consider, and how do they work? What are the side effects of these treatments? What results can I expect from these treatment options? Are there any advances in CSCC treatment to be aware of? What other options may I consider (e.g., clinical trials)?

If you think you or someone you know may have CSCC, contact a doctor and visit SkinCancer.org.


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Newly Launched Cancer.com Provides Much Needed Personalized Support for People Impacted By Cancer

2/19/2018

 
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(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."
Ellen Miller-Sonet 
Chief Strategy and Alliance Officer 
CancerCare


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:
  • Insurance and financial assistance information
  • Tips for effectively engaging with a healthcare team
  • Information about living well (eating healthy, getting sleep, staying positive, and more)
  • Local support ranging from clinical trial information to travel services

“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."
Chuck Westbrook
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:

  • My Care Activator™, an exclusive health coaching tool developed by behavior scientists at Johnson & Johnson, helps identify specific needs and prioritize modifiable behaviors. Some skills this tool will help you build include coping with symptoms, working with a care team, asking for support, participating in appropriate exercise, and getting better sleep.
  • Advocacy Connector helps you access the support you need through a comprehensive listing of resources based on your cancer type, location, and specific needs. Use this tool to search for local support ranging from clinical trial information, to travel services and wellness activities.
If you or someone you know is living with cancer, visit Cancer.com today to access useful information and tools to help you along your care journey.
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