How to help CSC in 30 seconds or less

ReadyRaiseRise sample gallery flagWhat if a 30 second action could raise thousands of dollars, and then those dollars helped provide millions of people touched by cancer as well as their families with high-quality social and emotional support? It sounds too good to be true, right? It’s not. In fact, you can do that right now and until next Tuesday!

So what are we asking, exactly? Help us finish strong in the last week of Ready. Raise. Rise., a national competition sponsored by Bristol-Myers Squibb to raise awareness of cancer advocacy organizations. To participate, you just have to create virtual flags in honor of anyone you know who is touched by cancer. Participation is free, but the payoff is big—a $75,000 donation to the winning organization! Join the Cancer Support Community family in creating as many flags as we can as many times as we can to reach our goal.

ready raise rise formHere’s how to help:

1)     Visit

2)     Enter your name and email into the form.

3)     Choose a background color and a slogan for your flag from the drop-down menu

4)     Enter the first name of your honoree and their connection to you (ie: parent, sibling, friend, self, coworker, mentor, etc.)

5)     Choose Cancer Support Community from the list of advocacy organizations

6)     Submit!

Each of those steps take less than 30 seconds all together, so it’s quick and easy to create many flags in just one sitting. And, when you’re done, your FREE donation will have helped CSC provide our crucial services and resources to more people who are touched by cancer.

Who will you raise your flags for? Share with us in the comments on our Facebook page, then share this link with your family and friends. #RaiseYourFlag

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How do patients define value in cancer care?

This week’s blog post is by Kim Thiboldeaux, CEO of the Cancer Support Community. This blog post also appears this month in the Huffington Post, and you can read more of Kim’s Huffington Post blog posts here. Buffet once said, “Price is what you pay. Value is what you get.”

In a time when the price tag on health care continues to rise, and more of the cost burden is being shifted to patients, there is a crucial conversation taking place in the cancer world about how value is defined. It led us at the Cancer Support Community to ask – do patients define value the same way as the health care system? And we sought to get answers by first asking the experts- the patients themselves- a single question: “When considering your cancer experience, how do you define value?” Thousands answered by participating in our Cancer Experience Registry, a panel of cancer patients. The data was so compelling that we launched additional registries for specific cancers, starting with metastatic breast cancer “mbc”. While there are some consistent themes across the various diagnoses, people with different kinds of cancer have issues that are more specific, or even unique to their diseases. At the same time, we researched traditional definitions of value in health care so that we could compare them with the definitions put forward by people with mbc. The disconnect between the two was staggering – but maybe not surprising.

There are many different stakeholders in health care, therefore, many different definitions of value. Most of the definitions we examined included some combination of cost, productivity, toxicity, and quality of life. The Institute of Medicine defines value as the “best care at lower cost.” Many ask the question, “Does the benefit of the care equal the dollars spent?” In cancer care, we have seen dramatic increases in the cost of care – higher than the increases in overall health spending – but only modest gains when it comes to survival.

We examined responses from 769 patients with metastatic breast cancer. The results of the survey were recently presented at the 5th Annual Conference of the Association for Value-Based Cancer Care. 38.4% of respondents defined value in terms of “personal value.” For example, one patient defined the term as, “Information and appropriate communication of that information at the right time and the right place.” Another patient replied by saying, “Whatever is going to give me integrity.” On the other hand, only 7.4% of patients defined value in an economic context. For example, one patient said, “Value in cancer treatment is getting the best options at the lowest cost, presented to you in a manner that is easily comprehended.” Many of the responses related to value centered around quality of life and feeling well enough to engage in family activities and celebrations, hobbies, work and other functions that bring meaning to patients.

In addition, patients told us that they would like more transparency in their health care – a clearer understanding of all of the treatment options available to them and what their total care will cost – so that they are making decisions and trade-offs with their eyes wide open. How can patients think about value in the traditional sense when they don’t know what is on the table? Some patients tell us that they don’t necessarily see commensurate value in high cost care that will significantly impact their families financially, but will only deliver a few extra weeks or even months of life. Health care has become so complex and tangled that is it nearly impossible to “pull back the curtain” to understand and answer fundamental questions: how much do my medicines cost? How about the visits to doctors and specialists? Scans and other tests? What about hospital costs? I would say you have to be a PhD to figure it out, but we know many PhD’s who have yet to crack the code!

There are several critically important questions that we need to ask ourselves as we seek a comprehensive definition of value:
- Does more expensive care equal better outcomes?
-How do we create a truly integrated model of quality cancer care that includes the things that matter to patients?
- How do we start to think about a value model that allows for patients’ preferences and priorities to be included?
- How do we allow those subjective measures to be included in an otherwise objective formula?

It is incumbent upon all of us in cancer care to engage in conversations with patients, not just about patients, in order to arrive at a definition of value that includes not only an economic formula related to cost and outcomes, but that also incorporates the patient’s value system – his or her preferences and priorities – in order to deliver a quality care model with transparency and integrity. It is a big task, but our Cancer Experience Registry has taught us that patients are ready to talk and share, and sometimes what they have to say will go against conventional wisdom. Patients are the experts – isn’t it time we start listening a little more closely?

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Life after treatment: Creating a new normal

bigstock-Mature-Couple-portrait-outdoor-19461536(1)Once the fight against cancer is won, a new journey begins.

People don’t always talk about life after cancer. The stories and movies tend to focus on the treatment. After treatment is over, the story is over and life appears just to go on. However, this is generally not the case. There can be left over side effects from treatment, both physically and emotionally, as well as questions about the future. How to go back to “normal” may feel impossible–you may not even know where to start.

Cancer changed your life, and just because treatment is over does not mean you have to go back to exactly the way things were. Your “new normal” is how many people describe life after cancer.

Here are some tips to help create your new normal:

Physical Health: After treatment you and your family members may expect you to feel better after just a few weeks.  But you may not. Cancer treatment often comes with long-term fatigue and mental fogginess often referred to as “chemo brain”.  You may also experience pain from surgeries or still have to deal with other complications from treatment. One tip is talk to your doctor and figure out the best ways to manage any long term side effects you’re experiencing. Eating right and exercising regularly are good ways to feel better during and after treatment.

Mental/Emotional Health: Cancer is a disease that not only affects you physically, but mentally and emotionally as well. Once treatment is over you may feel a mix of emotions, from relief to sadness to anxiety. This is okay. Recognizing your emotions and processing them is a good start. Seeking help is also important. Joining a support group may be beneficial for you. Keeping a journal or finding a healthy outlet for your emotions can also help. You can also reach out to the Cancer Support Community Affiliate near you for support.  Or you can call our Helpline (1-888-793-9355) at any time if you feel like you have difficulty managing your emotions, or just want someone to talk to.

Relationships: During your treatment the relationships between you and your family members and friends may have changed. People may not know how to talk to you about cancer, or feel wonder if they should even bring it up. You may feel isolated, or like no one really understands. Keeping communication open and honest is important for your relationships to move forward.  It may be beneficial for you to be the one to start the conversation; ask others how they are feeling or how they have been in order for them to open up.

Work: Due to medical bills and other financial burdens, going back to work may be necessary.  However, if you are not physically or mentally ready to go back, it is okay to wait. Going back to work can feel strange and make you nervous. Your co-workers may not know how to talk to you for fear of saying the wrong thing. You may also not be able to handle the same work load as before due to fatigue. Try talking to your boss or supervisor about this; do not be afraid to ask for help.

Today there are an estimated 14.5 million cancer survivors in the United States. The number of people who survive cancer continues to increase. We know a lot today about how cancer and treatments affect patients long-term. Experiences with treatments and life after treatment are things to be shared, so as a community we can learn and grow. If you would like to share your experience with cancer or caring for someone with cancer please join the Cancer Experience Registry. You can share your experience and help change the way we see cancer.

Once cancer treatment is over, adjusting to life may be strange at first. It is important to remember that you do not have to go through anything alone. There is always love and support out there for you.

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The benefits of exercise during treatment

Body of a beautiful girl in a meditation on the beachEven though exercising may feel impossible during treatment, it is extremely important and may help with long term recovery. When you are newly diagnosed, so many other things related to health tend to take priority. But, over the years a growing number of studies show that exercising is greatly beneficial to your treatment and long term care.

One of the best reasons to workout during treatment is that it has been proven to reduce fatigue. Patients that exercise during treatment actually experience 40-50% less fatigue according to this study from the National Comprehensive Cancer Network.

Exercising regularly also helps improve mood, self-esteem and quality of life for people going through treatment. It can prevent further complications during treatment as well as other diseases.

It is easy to gain weight during treatment due to changes in physical activity and nutrition. However, according to studies, gaining weight during or after treatment may increase the risk of recurrence. People who exercise regularly during treatment are less likely to gain weight, so this risk is reduced.

It is important to remember that long term care is more than just treatment. It is about your overall health. Exercising regularly can help with your long term care by keeping you healthy both physically and mentally during and after treatment.

There are several different types of exercises that you can do:

  • Aerobic – This is cardiovascular based activities such as walking, swimming, biking or even dancing.
  • Strength – Also known as resistance training, and is when you workout to increase the strength of your muscles by lifting weights or creating resistance. Keeping muscle mass and bone density is important for you overall health.  Using weights, resistance bands and practicing water aerobics are all examples.
  • Flexibility – Keeping your joints and muscles flexible can help you maintain your ability to perform daily tasks and improve your balance. Stretching after your workouts will also help your muscles.

If you feel like you don’t know where to start when it comes to exercising during treatment there are plenty of resources.  You can also seek out a personal trainer or a physical therapist, or see if your treatment center has small group classes you can take.  Each of CSC’s Affiliate locations also offer different activities such as yoga or tai chi. Click here to find an Affiliate near you.

You also do not have to go to a gym in order to get a good workout in. Exercise is something you can do at home and even incorporate into your daily routine. Taking a walk around your neighborhood or taking the stairs when possible are great ways to get a workout in.

Everyone experiences cancer differently. This is especially true when it comes to treatment and planning long term care. Whether you exercised regularly during treatment or wished that someone would’ve told you exercise was possible during treatment; you can share your experience with us. By joining the Cancer Experience Registry you become a part of a community of people who have faced cancer.

The hardest part of exercise is getting started. Talk to your doctor and find a workout plan that works for you. The benefits are endless—in addition to improving your overall physical health, it can improve your mental health as well.

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Greetings from the CSC Staff Retreat

IMG_8244-croppedIt takes a team to ensure that no one faces cancer alone, and with an estimated 1.6 million people diagnosed with cancer every year, we’re glad to have a great team assembled here at CSC.

This week we were reminded of the importance of our mission at our annual staff retreat–one of the only times out of the year that the entire CSC team gets to come together in one room and discuss ways to best provide the highest quality social and emotional support to all people touched by cancer.

This year’s retreat was held in Washington D.C. at the CSC Headquarters office, and it was a great opportunity for our newest staff members to meet and share ideas with staff members who have been with CSC for 15+ years. Besides reviewing (and maybe competitively quizzing each other) on the long history of CSC, we also planned for  a long, successful future.

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