What do I tell the Kids?

fsac what do i tell the kids“Any emotion is ok. Don’t try to be perfect. Fail a little, prevail a little. Get through it best you can.”

So begins the advice of a parent and lymphoma caregiver. Coping with cancer and being a parent both are challenging tasks in their own respects. Doing both at the same time can be especially difficult, because there is no “one size fits all” way to approach telling your children that you have cancer. How each child reacts to this will depend on their age and their knowledge of cancer, but like living with cancer, there is no “one size fits all” experience.

Children are sensitive to changes in their parent’s behavior, even if they are too young to comprehend what is going on. A young child may blame themselves, thinking “I didn’t behave so mommy got sick.” They might develop separation anxiety or behavioral problems at school. It is also common to see a regression in behavior where a child may act younger than they are or they may act out themes that are illness-related during playtime.

Happy Mixed Race Ethnic Family Posing for A Portrait in the Park.In a survey conducted by the Cancer Support Community, as much as 66% of parents said they did not talk openly or share their feelings about cancer with their children. While it may seem like a good option to hide a diagnosis because you think it might upset them or that they are too young to understand, leaving children out of the diagnosis can create feelings of distress and isolation instead of avoiding them.

The Cancer Support Community recommends letting your child know these three points, regardless of their age:

Cancer is Not Your Fault

It is common for children to think cancer is their fault; however, they generally will not share this with others. By explaining that cancer is not their fault, you can help your child to feel less guilt and stress around the cancer diagnosis

Any Question Is Ok

Children may be afraid to ask questions if they have not been given permission. Let them know that any question is ok, and that you will do your best to have an answer. There may be times that you don’t know the answer, and that is okay too.

Cancer is Not Contagious

Many children think cancer is contagious and become fearful of hugging or kissing their family member. Let them know it’s ok to be close, and that they cannot catch cancer.

pictureIf chemotherapy is part of your current treatment, it is also important to have the discussion of why you are losing your hair. Cancer treatment can be very confusing to a child and they may also not understand why you are going to so many doctor appointments or why you are in and out of the hospital. This also ties into one of the hardest, but most crucial questions that you may or may not be asked but should be discussed: are you going to die? It is critical that the child knows there is a good support system behind them. One possible response could be, “People can die from cancer, but many people live. My doctors are doing everything they can to get rid of my cancer. That’s why I am at so many doctors’ appointments and have so many visits to the hospital. Right now they think that the medicine is working, but if that changes, I will let you know.” Be sure to keep that promise and let your child know if the situation does change.

Although every situation and every child is unique to each family, being honest and having open communication is the healthiest way to go about talking about cancer. Children should know its ok to talk, to ask questions, to cry and to help when they can. The more they are assured they are not alone in their feelings, the better off everyone will be.

For more tips on talking to your children about cancer order or download our free publication, Frankly Speaking About Cancer: What Do I Tell the Kids.



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Help us shine the light on MPNS!

Shining the light on MPNs 2015Every fall we hear a lot about raising awareness for different cancer types—from childhood and gynecological cancer in September, breast cancer in October to lung cancer in November (just to name a few of the awareness months that take place this season). But there is one other awareness day this fall you may not have heard of. It’s MPN Awareness Day for people impacted by myeloproliferative neoplasms, and it’s taking place tomorrow on 9/10/2015.

MPNs are a rare group of blood cancers originating in the bone marrow that are diagnosed in about 14,500 people each year in the United States.  Raising awareness of a rare diagnosis like an MPN is important not just on MPN Awareness Day, but every day.

What exactly is an MPN?

An MPN causes the bone marrow to create too many red blood cells, platelets or certain white blood cells, which can cause complications such as anemia, infection or fatigue as the extra cells build up in the blood and/or bone marrow. Types of MPNs include polycythemia vera, essential thrombocythemia and primary myelofibrosis.

Why is awareness so important?

  • Getting an accurate diagnosis can sometimes be difficult.
  • Unlike the other types of cancers being recognized this month, few people have heard of MPNs, causing those living with this diagnosis to feel isolated.
  • People living with an MPN don’t always look sick.
  • Treatment for MPNs is often just to “watch and wait” or is symptom management only.

What can you do if you’re living with an MPN?

If you are impacted by an MPN, there are several things you can do to feel empowered and live well with your diagnosis.

  • Build a support network of friends and family you can count on.
  • Communicate your emotional and physical concerns to your health care team so they can help you find support.
  • Try to stay relaxed through stress-reducing activities such as yoga, meditation, light exercise or writing.
  • Take care of yourself by eating well, getting plenty of sleep and exercising regularly.

How can we raise awareness of MPNs?

  • Download our toolkit to learn more about MPNs and how to host an MPN Awareness event near you.
  • Join us on social media with the hashtag #MPNAware2015 to stand with people impacted by MPNs and to share your experience on our Facebook and by Tweeting to @CancerSupportcm.
  • Join your local CSC for their 2015 awareness events throughout the month of September. For a list of CSC Affiliate events click here.
  • Learn more about MPNs by downloading our free fact sheet.

If you or a loved one is impacted by an MPN, you’re not alone. Take part in our MPN Awareness activities on social media during the entire month of September by following #MPNAware2015.

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Patients, raise your voices!

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.

huff post tedx articleNot too long ago, I had to make an appointment for a family member with a specialist at a large academic medical center in New York City. The referral was made by a community doctor as a result of certain concerns raised by the doctor about the results of various tests and scans. After a week of leaving messages and talking to four different people at this medical center, I was told that the earliest the doctor could see us would be in October. October! And here we are in August!

These types of scenarios make it hard to believe that anyone in the medical community is thinking about the patient and the emotional and psychological implications of waiting more than two months to see a doctor when concerns have been raised about a patient’s medical condition. It is hard to believe that things were ever different, and yet they were.

Recently, I was invited to give a TEDx Talk with UC Davis in San Francisco on the subject of Redefining Normal and I took a look at health care — where we were, where we are and where we’re going. Remember when we had family physicians? A doctor would come into our homes to treat us and our entire family. Doctors knew us — our circumstances, our family, our financial pressures and medical history and our overall lifestyles. Things began to change radically with the institutionalization of health care that occurred over the past several decades.

The emergence of Medicare, Medicaid, labor unions, private insurance companies, etc. resulted in care being based on formulas — not individuals. Likewise, the significant medical and scientific advances in screening, testing and treatments have no doubt saved countless lives but further distanced patients from their doctors and health care team. We know much more about a patient today than at any time in our past but have forgotten that sometimes what matters most is actually what the patient has to say.

Today, we are living in a time of change. There are a growing number of examples of the health care system bending towards the needs and wants of the patient. Walk-in clinics are a good example — fast, easy, open early, late and on the weekends. On a policy level, The Affordable Care Act has mandated the formation of the Patient-Centered Outcomes Research Institute (PCORI), examining different models of patient-centered care and how they can improve quality and decrease cost. And we are witnessing a proliferation of health-related apps allowing consumers to track their own health, wellness and medical information. There is an all-around push across health care for a new model of “patient centered care” where the individual voice matters again.

And yet, as the system is evolving towards true patient-centered care, and patients are becoming more and more involved in decision-making, few patients are actually prepared for this new model.

At the Cancer Support Community (“CSC”), we have a program called Open to Options. Through this free program, a patient can talk to a trained Decision Counselor when they are confronted with any medical decision — whether to choose Treatment A versus Treatment B, a mastectomy versus a lumpectomy, or perhaps whether to enter a clinical trial. The Decision Counselors help the patient raise his/her voice by developing a question list and insert his or her own preferences and values into the equation.

Usually, the doctor is looking at medical data, outcomes, and efficacy and recommending treatments that will lead to the best survival for the patient. But patients tell us that life is about so much more than “surviving” — it is about living! Patients want to know, “How will this impact my quality of life — my mobility, my independence, my ability to enjoy friends and family?” “What will the cost of this treatment course be for me and my family versus other treatments?” “Will I get a placebo in a cancer clinical trial?”

Yet for all the progress I have seen on the individual patient front, questions continue to linger. “How do we better integrate these types of interventions that really matter for patients into mainstream medical care?” “How do we make sure integrated care — including counseling, decision-making, patient education, comprehensive care planning — is mandated, integrated and paid for?” These are things we know matter to patients. How do we ensure that the patient voice is raised — and heard? We tackled the institutional deaf ear by creating an outlet for the collective Patient Voice, our Cancer Experience Registry in which nearly 10,000 patients with cancer and cancer survivors have shared information about their experience and needs throughout the cancer journey.

The data has been valuable in identifying gaps in care as well as leading to new programs and services to address those gaps. It has revealed that 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 individual diseases. For example, a growing number of patients are experiencing their cancers as a chronic condition over the course of years. This trend means that people impacted by cancer have to manage both short- and long-term side effects and related costs over a long period of time. For some, their treatment will never end, and this has many layers of implications which need to be addressed.

While we all agree that as a society we need to do a better job of controlling health care costs, we also have to recognize that we need the flexibility to create an individual plan for a patient based on co-morbidities, genetic predispositions, and other individual biological and psychological factors. There continues to be the need for a much-improved model of patient-centered care where the patient is consulted, respected and regarded as key to the decision-making process.

We are staring down the road at 77 million boomers who will be experiencing a wide range of medical conditions and serious and chronic illness. We are also staring down the road at a predicted shortage of health care workers during a time of growing need and demand. An educated and empowered patient who is involved in the process and trained to be his or her own best advocate has the potential to be one of the most powerful tools in the health care toolbox. Welcoming patients into the conversation could be — I dare say — revolutionary as we face these uncertain years ahead.

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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 ReadyRaiseRise.com

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.

http://www.dreamstime.com/stock-images-choice-health-money-caduceus-dollar-signs-scales-d-image47129974Warren 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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