Working together to achieve the same mission

President and CEO Kim Thiboldeaux with Andy and Dotty, two volunteers from Cancer Support Community San Francisco Bay Area, in the Breakaway from Cancer photo booth

President and CEO Kim Thiboldeaux with Andy and Dotty, two volunteers from Cancer Support Community San Francisco Bay Area, showing their CSC pride in the Breakaway from Cancer photo booth at the Amgen Tour of California.

Google “cancer organization” and your browser’s results will seem endless. All sorts of nonprofits are out there offering a variety of educational resources and supportive programs for people impacted by cancer, whether on a local, national or international level. But if you don’t know what to look for, how do you find out about resources that fit your needs? If you’ve been following the CSC blog for a while, the Breakaway from Cancer initiative is nothing new—in fact, it has been going strong for 10 years! This partnership is unique in that it brings cancer organizations together to share resources and help patients and their loved ones get the support they need.

What is Breakaway, again? Here’s a refresher: Breakaway from Cancer was founded in 2005 by Amgen. It’s a partnership of Amgen and four nonprofit organizations that cover the full cancer experience, from prevention through survivorship. These organizations are the Cancer Support Community, the Prevent Cancer Foundation, the Patient Advocate Foundation and the National Coalition for Cancer Survivorship. Breakaway’s mission is to spread the word about all of the helpful, high quality, free resources that exist for people impacted by cancer.

One of the places you’ll hear about Breakaway from Cancer is at major sporting events. Happening right now is the Amgen Tour of California, the largest professional cycling race in America. At events like the Tour, you’ll find the Breakaway partners sharing resources at the Lifestyle Festival, which accompanies each stage of the race. The Tour also has mini-events like the Breakaway Mile Walk, where cancer survivors and their loved ones come together to show their support of all people impacted by cancer.

Another place you’ll hear about the partnership is online. When searching for resources online to help him during his cancer diagnosis, Patrick Devinger came across the Breakaway from Cancer website. From there, he learned about the Cancer Support Community (that’s us!) and found his local affiliate, Cancer Support Community San Francisco Bay Area. Now cancer-free, he remains an active volunteer with the organization. Patrick shared his story on our radio show last week. Follow the Cancer Support Community and our Breakaway partners this year at the Amgen Tour of California by checking out the action on our Facebook page and the Twitter hashtag #breakaway.

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Doctor Priorities vs. Patient Priorities

bigstock-Doctor-Nurse-Talking-With-Kin-45083488For a doctor, the number one priority is treating the patient’s illness. But for patients, their number one priority isn’t always their disease. A disease is just one part of someone’s life. So, what happens when your priorities and your doctor’s priorities don’t mix?

In a recent New York Times blog post, physician Danielle Ofri, M.D., recalled a particular patient she had—a well-informed, middle aged patient who was living with diabetes—and how shocked she was to hear he had been ignoring his disease for years, causing it to become drastically worse. However, he wasn’t overlooking his illness out of ignorance; the treatment for the disease simply was not suitable for his lifestyle and needs.

“For my patient, his wide-angle lens took in the whole of his life, of which diabetes was one small part. For me, in the 20 minutes allotted, my lens was narrowly focused on the disease that posed the gravest and most immediate risk to his health,” Dr. Ofri writes.

Living with a cancer diagnosis can be similar. The disease and its treatment can be disruptive to everyday life. However, it’s important to discuss your lifestyle, priorities and what options you have with your doctor so the disease can be treated effectively without compromising your lifestyle and your personal needs.

For the patient in the story, managing his disease meant having lengthy discussions with the doctor over both practical and philosophical matters, such as how a taxi driver who spent most of his day immobile and eating street-vendor food could adhere to the diet and exercise requirements necessary to control his disease. When discussing treatment, it’s important to talk to your doctor about these different facets of your life, such as how conducive your work or home life is to getting the type of diet and exercise you need, how your religious background could affect treatment, how to best manage side effects of treatment and the type of quality of life you can expect with treatment.

This blog shows that making a decision about treatment is never easy, and coming to an agreement with your health care team about what’s best for you can also be a unique challenge. Treatment isn’t just about the disease, but also how to make life “workable” for you. People living with cancer often run into dilemmas such as wanting to have hair for a family wedding, or wanting to feel healthy enough for a certain event. These concerns and requests are very common, and it’s important to let your doctor know about any individual goals you may have so you can work together to decide the best treatment plan. Click here to read the full New York Times blog.

At the Cancer Support Community, we recognize the delicate balance between having the lifestyle you’re comfortable with and treating your disease. Through open and honest communication with your doctor, you can find that balance without ignoring your disease or giving up your lifestyle. Programs like Open To Options help you come up with an organized list of what questions to ask and topics to discuss with your doctor so you can make a treatment decision right for you. Open To Options is made available through the Cancer Support Helpline, or through certain CSC Affiliate locations.

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When life gives you lemons, make lemonade. When life gives you cancer…

Maaran Cohen, CEO, Hello Doctor

Maayan Cohen, CEO, Hello Doctor

Today’s guest blogger is Maayan Cohen, CEO and Founder of Hello Doctor™, a free mobile app that empowers people to control their health and organize their own medical records. Below is Maayan’s story that tells how she and the Hello Doctor team are revolutionizing and simplifying the patient experience.  

4 years ago, my former boyfriend started having bad headaches. They usually started around the evening time, until one day he woke up with a headache — that’s when I knew that something was seriously wrong. I dragged him to the emergency room and 3 hours later, the sky fell on us. A scan revealed he had a brain tumor and must undergo immediate surgery. That morning marked the beginning of 2 excruciating years of fighting cancer that included surgeries, chemotherapy, lab tests, radiations, second opinions and countless visits to doctors who are part of disparate medical networks whose technology systems don’t talk with each other.

HD_LogoEach doctor we saw gave us a net of about 10 minutes face time. Beyond the uncertainty and fear, the worst part of these meetings was trying to explain his medical condition by pulling out the relevant Medical Records that the doctor wanted to see out of my “medical binder”. I knew that if I could not find the right document at the right time it would affect his treatment and in this case — it can even cost us his life.

This story has a couple of happy endings. First, my former boyfriend went into permanent remission, he is doing great today and we are still good friends. The second is Hello Doctor. The frustrations of my experience with the health care system inspired me to quit my job and start Hello Doctor, which is intended to help millions of people who are dealing with the same frustration that I had to deal with. Today, Hello Doctor’s team has 5 members — all went through a similar experience with different medical conditions — bowel disease, breast cancer, ALS and pregnancy monitoring. We have all been there, and we decided to devote our career to helping people feel less confused and more in control when talking to their doctors.

Hello Doctor stores your medical records on your tablet or smartphone

Hello Doctor stores your medical records on your tablet or smartphone

Hello Doctor is a free mobile app that empowers people to control their health. We started with an iPad app that helps people to manage and understand their medical records. It allows you to easily aggregate all of your medical records (paper or digital) on your tablet and get to any one of them in literally just 2 taps. It allows you to share your medical records with your doctor and take notes on the medical records themselves — so that you won’t forget what bothered you and resolve it in time. It’s that simple and it’s that useful, especially in real time — when you are facing your doctor.

Download Hello Doctor to your smartphone or tablet today!

Download Hello Doctor to your smartphone or tablet today!

A few weeks ago we found out that we are already helping people. Ilene, a 60 year old cancer survivor sent us an amazing thank you letter. “A simple flu shot meant that I have to take my 2 medical binders with me to the doctor as he doesn’t have access to all of my records. Your app is invaluable”. This is exactly what we dreamed of when we started this project and we need your help in spreading the word about Hello Doctor. You can start by downloading and trying it yourself — take control over your health now. Manage your medical records with Hello Doctor.

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Exercising for wellness

Carol Michaels is a fitness industry leader

Carol Michaels is a fitness industry leader

Staying active when you are living with cancer can be a challenge. Fortunately, healthy physical activity does not have to be intense and strenuous. To help us dive into this topic, this week’s guest blogger is Carol Michaels, a cancer exercise specialist with more than 18 years of experience as a certified fitness trainer, and founder of Recovery Fitness. Visit her blog here.

Studies have shown that physically active cancer survivors have a lower risk of cancer recurrences and improved survival compared with those who are inactive. But how exactly do you begin exercising?

Participants enjoying an exercise program at CSC Greater Philadelphia

Participants enjoying an exercise program at CSC Greater Philadelphia

What often gets in the way between survivors knowing they “should” exercise and actually doing it is an incorrect assumption. I have observed that many people assume that exercise has to be intense and high impact (e.g. running). An effective exercise program for cancer survivors, however, will start gently with slow progression. A good exercise program should take into account:

  • What exercises you already do
  • Your limits
  • What you can do now
  • Your interest and needs
Participants enjoying a yoga class at Gilda's Club Chicago

Participants enjoying a yoga class at Gilda’s Club Chicago

Starting an exercise program is difficult, but so rewarding. All types of moderate exercise are beneficial. Think about the activities or sports that you enjoy and do them. Do you like to walk, ride a bicycle or dance? If so, you can build your exercise program around the activity you find enjoyable.

How can you stick with your exercise program? It is a good idea to set goals.  Some people derive great satisfaction in setting and then achieving goals. This can be done with charts and graphs charts to record your progress and reward achievements. Cancer survivors can show tremendous progress when participating in a consistent well-designed exercise program. You should keep in mind that just like everyone else, you will have good and bad days, so you should be able to adapt. Keep as active as possible, be safe and have fun.

Be sure to consult with your health care team before beginning any exercise program.

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Meet Broadway Star and Cancer Support Community Supporter, Stephanie J. Block

Stephanie J. BlockHave you ever wanted to see Broadway star Stephanie J. Block perform? Stephanie J. Block, star of such productions as Wicked and Anything Goes, will be performing at the Cancer Support Community’s Spring Celebration on April 24th in New York City, and we want to make sure you have a ticket!

CSC recently had the chance to interview Stephanie about her upcoming performance and connection to cancer and the Cancer Support Community.

What is your connection to cancer?

The effects of cancer have touched me in profound ways. The most recent was a dear family friend who had fought her first battle with breast cancer with so much grace, humor and strength. When the cancer returned last year, the battle took her life. She was a strong, vibrant and impressive woman… a wife, a mother, a new grandmother and a teacher who was loved by so many, including me and my husband. Again, this is just the most recent account of a life taken too soon.

I want to mention an incredible man and a master costume designer, Mr. Martin Pakledinaz. It was brain cancer that took Marty. He created and designed and inspired until the last moments of his life. I miss him deeply.

I, myself, had a scare with cervical cancer. Back in 2004 a severe case of cervical dysplasia led my doctors to use the word “cancer”. I was terrified. But because of very early detection and wonderfully proactive physicians and specialists, I was clean after the first surgery. After years of doctor visits and check-ups and multiple cervical scrapings (more than I care to count), I was deemed “unextraordinary”. I found such relief in a word that seemed so derogatory before that experience.

Sadly, I could continue with other names, stories, cherished lives of loved ones taken by this pestilence, but instead I will remember them fondly and continue to work/pray for a cure.

How and when did you become involved with the Cancer Support Community?

I have only become aware of Cancer Support Community these last few months. The services they provide and the care and understanding with which they provide it, it’s a true gift. As they so beautifully and simply put it…”so that no one faces cancer alone”.

Tell us more about your upcoming performance for the Cancer Support Community.

I am so honored to have been included in the Cancer Support Community Spring Celebration. There is something that shifts in me when I am able to sing for an extraordinary event… an extraordinary purpose such as this. The songs take on new meaning. The storytelling becomes a bit more personal. And in this time of spring, I will perform songs of celebrating life, love and hope.

What inspires you?

I am inspired by those who give of themselves hoping to create a better world. I have always found that when it’s being reported that “things” are at their darkest, you turn to find a loving gesture, a giving hand, a motivated spirit, an unexpected and generous act. People are good at heart. When I pay attention and recognize that truth… I am inspired.

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