What you need to know about Lung Cancer Awareness Month

November is Lung Cancer Awareness Month. During this month, health care organizations, professionals and the community bring attention to lung cancer. Lung Cancer Awareness Month initially began in 1995 as Lung Cancer Awareness Day. However, as the lung cancer community and movement grew, activities to promote awareness also grew, transforming the day into Lung Cancer Awareness Month.imgres

Lung cancer is the leading cause of cancer death among both men and women in the United States. In 2015, about 225,000 people will be diagnosed with lung cancer. Therefore, it is important to understand a lung cancer diagnosis, risk factors, sign & symptoms and resources for support.

Lung cancer is divided into two main types: non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC). Non-small cell lung cancer is the most common type, accounting for about 85 percent of lung cancers. There are three NSCLC subtypes: adenocarcinoma, squamous cell carcinoma and large cell carcinoma. Small cell lung cancer accounts for about 15 percent of all lung cancers and is most often seen in people who currently or formerly smoked.

The signs and symptoms of lung cancer can vary from person to person. However, when symptoms do occur, they may include:

  • Persistent coughing
  • Shortness of breath
  • A change in color or volume of sputum (mucus)
  • Harsh sounds with each breath
  • Coughing up blood or mucus
  • Loss of appetite or unexplained weight loss
  • Fatigue
  • Headaches, bone or joint pain
  • Bone fractures not related to accidental injury
  • Neurological symptoms
  • Neck or facial swelling
  • General weakness
  • Bleeding or blood clots

Often times, these symptoms do not present themselves until the cancer is in later stages. However, new screening techniques for lung cancer continue to be developed, helping to detect the disease at an earlier stage.

If you would like to learn more about lung cancer, check out the following Cancer Support Community resources for more information:

Also, don’t forget to tune in to Frankly Speaking About Cancer on Tuesday, November 25 at 4 p.m. ET for a special episode dedicated to learning more and raising awareness of lung cancer.

Coping with a lung cancer diagnosis and treatment can be emotionally challenging. But you are not alone! There are many ways to get the support you need. The Cancer Support Community offers resources to help support you and your family through this experience. Whether you are newly diagnosed, a long-time cancer survivor or a loved one, you can call CSC’s toll free Cancer Support Helpline® at 1-888-793-9355 to speak with a call counselor who can help answer questions that you have and link you to valuable information and support.

How will you raise awareness for lung cancer this month? Let us know what activities you have planned in the comment section below.

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Use this tool to help choose health insurance

Cancer Insurance Checklist_Banner Ad_FINALOpen enrollment for the health insurance marketplaces begins on November 15th. From then until February 15th, you may buy health coverage for 2015 on your state’s marketplace by visiting HealthCare.gov or CuidadoDeSalud.gov.

If you have cancer, a history of cancer, or a risk of cancer, the process of shopping for health insurance may be overwhelming. To help, the Cancer Support Community and a group of advocacy organizations created the Cancer Insurance Checklist, which is newly updated for the 2015 open enrollment period. You may use the Checklist to easily compare plans to decide which insurance is best for your needs and your budget.

By printing and filling out the Checklist for each plan that is being considered, you can make a comparison by taking your own personal medical needs, coverage options and costs into account. The Checklist can be helpful not only when you are comparing insurance plans yourself, but also when you are discussing your needs with your navigator, marketplace representative or health care provider.

The Checklist is available in English and in Spanish at www.CancerInsuranceChecklist.org or www.SegurosMedicosYCancer.org. These websites also provide helpful links to other resources related to cancer and insurance in English and Spanish.

We urge you to use and share this helpful new tool with anyone who may need it.  And if you need any assistance with cancer related issues, please call CSC’s Helpline at 1-888-793-9355.


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Delivering on Patient-Centered Care

CER report back coverPatient centered care, i.e. putting the patient at the center of his or her care. I think about this a lot. What does it really mean? What is the disconnect? Is it achievable? How do we prepare patients and their families? How do we prepare health care professionals?

I have been thinking about this more due to our recent release of pivotal information from the Cancer Experience Registry. The October 22 release of Elevating the Patient Voice looks at the cancer experience through the lens of 3,500 patients with striking results.

But first, is this issue. There is no doubt that we all are thinking about the patient and their families and, in that sense, placing them at the center of care. As a community, we talk to and about them, make decisions that impact them and even try to predict how they will feel. As I recently heard a physician say, “It is our duty to protect our patients.” Now, please do not misinterpret my thinking. I am thrilled that we are protective of our patients, as many are in the most vulnerable state of their lives. But in protecting patients rather than engaging patients, we may be compounding that vulnerability and moving patients from the center of care to hanging on to the caboose of a very rapidly moving train.

As one example, the Registry data shows that up to 65 percent of patients report feeling unprepared to make a treatment decision. 65 percent— that’s 2 out of every 3 patients. Of the 4,563 people who will receive a cancer diagnosis today, up to 2,965 will not be prepared to make a treatment decision. Yet, these same patients have to live with the outcomes of their care. Some are very positive and may result in better patient outcomes, including being cured. Some however, are not so positive and can exist with the patient and family for years to come. Patients in the Registry report missing social events (48%), depleting their savings (36%) and altering grocery expenses (37%) to pay for their care. They report short and long-term side effects that include up to 70% reporting significant levels of fatigue. And, they report impact to their ability to work (46%). Patients are living with the consequences of their cancer care and they deserve to have more of an understanding and voice in the process.

The good news is that when engaged, even in a one-time treatment decision counseling session, patients report being more satisfied with the interaction with their health care professional and report lower levels of decisional regret. And, as one physician reported, “they bring me better questions, not more questions.”

The Institute of Medicine report (Ensuring Quality Cancer Care) was published in 1999 and noted engaging patients as a key element in quality cancer care. 15 years ago. Since 1999, much as been done to advance this goal of engaging patients. Three more IOM reports, the 2012 Commission on Cancer Patient-Centered Standards, the American Society of Clinical Oncology Quality Oncology Practice Initiative, the oncology Medical Home models and others are trying. But how can we get there quicker and with more accuracy? Engage patients.

While it sounds simple to implement, it is not. Imagine a world where patients sit face-to-face with a care provider who has time to and is reimbursed for arriving at a care decision with the full understanding of the patient. Imagine a world where advisory panels that make major decisions on behalf of patients actually have people living with the disease informing their thinking. Imagine what could be accomplished in clinical research if patients were aware of their options. Imagine the result of shared-decision making and care planning from the point of diagnosis on overall patient outcomes, including patient dignity.

This level of engagement is within our reach. Now let’s all get busy, we’ve got important work to do.

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How Does Exercise Combat Depression?

Participants enjoying an exercise class at Cancer Support Community Greater Philadelphia

Participants enjoying an exercise class at Cancer Support Community Greater Philadelphia

A cancer diagnosis can be difficult to handle. Cancer affects your physical body as well as your attitudes, thoughts or feelings. You may experience a range of emotions like fear, anger, sadness and helplessness. When these feelings interfere with daily normal functions you may be experiencing anxiety or depression. It is important to talk to your health care team about these feelings so you can discuss ways to cope with these emotions. Some people participate in support groups or individual counseling while others talk with family and friends.

Another beneficial coping strategy people turn to is exercise. Daily exercise has been shown to improve symptoms of depression, release muscle tension and reduce levels of cortisol,–a stress hormone. When you exercise, chemicals called endorphins are produced in the brain, spinal cord and many other parts of the body. Endorphins can decrease your awareness of pain and trigger positive feelings in the body. Additionally, research shows that physical activity improves the quality of life for people in active cancer treatment.

Exercise does not have to be strenuous to be effective. The following are some examples of ways to stay active. Be sure to talk to your doctor before participating in any form of physical activity. Some simple and effective forms of exercise are:

  • Walking
  • Gardening or cleaning
  • Light jogging
  • Yoga
  • Tai Chi
  • Dance
  • Tennis
  • Swimming
  • Golf

There are also many other benefits to exercise. Doctors often recommend staying as active as possible. Exercise not only combats depression, but it can also:

  • Improve sleep
  • Reduce stress
  • Improve self-esteem
  • Strengthen the heart
  • Increase energy levels
  • Lower blood pressure
  • Improve muscle tone and strength
  • Strengthen and build bones
  • Help reduce body fat
  • Reduce the risk of cancer recurrence
  • Improve quality of life

The Cancer Support Community offers resources to help you cope and live healthy with cancer. Click here for more information on emotional health and physical activity .

If you have questions or would like more information you can call CSC’s toll free Cancer Support Helpline® at 1-888-793-9355 to speak with a call counselor who can answer any question you may have.

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Elevating the Patient Voice: 3 things we learned from Cancer Experience Registry data

“I cried all the time. I was so anxious and afraid. It was like nothing I had ever experienced. It made a huge difference when I told my manager what was happening and he told me that he was a melanoma survivor. He said my job was safe and I should do whatever I needed to take care of my cancer. I signed up for the Cancer Experience Registry to give back to other women going through what I did, let them know they can get through it” Linda P. – Cancer Experience Registry member

“I cried all the time. I was so anxious and afraid. It was like nothing I had ever experienced. It made a huge difference when I told my manager what was happening and he told me that he was a melanoma survivor. He said my job was safe and I should do whatever I needed to take care of my cancer. I signed up for the Cancer Experience Registry to give back to other women going through what I did, let them know they can get through it”
Linda P. – Cancer Experience Registry member

Since its launch in March 2013, the Cancer Support Community has asked people impacted by any type or stage of cancer to share the issues and concerns that defined their cancer journey with the Cancer Experience Registry. As of today, more than 7,000 participants have done exactly that, and have helped identify the social, emotional and financial needs of people living with cancer.

Today, the Cancer Support Community is excited to announce that the index report of these findings, Elevating the Patient Voice, is now available online! The Cancer Support Community will be commemorating the release of the first year findings at a presentation and reception at CSC’s Research and Training Institute in Philadelphia, PA. The event features Keynote Speaker Peter Bach, MD of Memorial Sloan-Kettering Cancer Center, who has shared his experience as a physician and caregiver for his wife after her diagnosis, treatment and death from cancer.

What have we learned from the Registry findings so far?

  1. There are significant challenges regarding the cost of cancer care. About one-third of patients  reported having to reduce their grocery expenses, and one-third  have depleted their savings due to cancer-related costs.
  2. Many people are concerned about long-term side effects. Nearly half (42 percent) of patients are seriously concerned about nutrition, and about a third (32 percent and 34 percent, respectively) are seriously concerned about fatigue and exercise.
  3. There is an ongoing need for social and emotional support. 37 percent of patients have serious worries about the future, and 35 percent have serious financial worries.

CER report coverHow will the Registry help people impacted by cancer?

The Cancer Experience Registry is the first of its kind, and it consists of items that measure the total cancer experience on the person diagnosed as well as his or her family. After completing the profile and questionnaire, members can compare their responses with others in the community and be connected to online educational content relevant to their concerns and interests.

“We hear over and over that patients feel uncomfortable bringing up their issues with their doctors. They don’t want to bother them, or be seen as a ‘bad patient.’ We put a lot of effort into asking questions that are sensitive to our population—and our respondents often tell us, ‘no one ever asked me that before,’” said Joanne Buzaglo, Ph.D., VP of Research and Training at CSC.

More highlights from the Registry data and more patient stories can be found in Elevating the Patient Voice, and for insights and updates from the event follow CSC on Twitter @CancerSupportCM.

Anyone who has ever been diagnosed by cancer at any time is invited and encouraged to join the Cancer Experience Registry. Click here to get started.

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