The Patient Power Blog

by Andrew Schorr – Host & Founder, PatientPower.info
Brad Stafford in action

My friend Brad Stafford

I wasn’t always a medical journalist. And I wasn’t always a cancer patient. Although, as I am lucky enough to age, it seems like a very long time. Yes, I began telling patient medical stories for a living in 1984 and became a leukemia patient in 1996. But my career actually started in Charlotte, NC in 1972 as a young television news reporter. Eventually, the leaders at WBTV News gave me the wonderful chance to not only host and produce human interest features stories but also to travel anywhere I wanted in North Carolina and South Carolina. That’s a big region and far beyond where people watch that station. It was a dream job for someone who was just 27. But I couldn’t do it alone, of course. I worked with a film cameraman, Brad Stafford, for over two years. Together we produced something like 250 human interest stories, and I will reminisce below for a good reason.

Why am telling you all this? Because just as my family is getting settled back in Charlotte after me being away 35 years, Brad has died from complications of liver cancer. I never got to see him as his decline was very fast, and I am very, very sad. No doubt, dear reader, you have lost people you care about, too. It’s tough as your time with them is etched in your memory. For the benefit of Brad’s family and friends—and maybe me (and you) too—I wanted to recall some good times long before cancer claimed Brad’s life or disrupted mine:

Our job with Carolina Camera was to tell the “good news” stories that made the Carolinas unique. That meant interviewing Willard Watson the aging moonshiner in the mountains who regaled us with stories of outrunning the “revenuers.” The moonshiners and their hot cars were the roots of NASCAR. As a New York City boy, this was fascinating to me. Brad’s camera rolled away. Also in the mountains of NC, there was the story of “The Whooshies.” These were young people who made an idol of one of the first huge wind turbines in NC. These were “flower children” in the ’70s who danced and sang underneath a huge steel monolith overlooking the college town of Boone.

WBTV crew

WBTV crew in action

Then there was the time near there when Brad and I were doing a story on extreme skiing. We heard a roar and spotted a B-52 bomber flying LOWER than us through a valley. We tracked it down and, months later, flew in one of those B-52s from a base near Raleigh—back over the ski area at 500 feet and then up to 41,000 feet for an aerial refueling. Brad was thrilled.

Brad and I loved flight. One day, he proposed we train to be pilots. So, together, we took and passed the FAA written test for private pilots. Then we took lessons, soloed and became pilots. WBTV was great to us and would pay for us to rent planes and to fly to assignments and to have a platform for aerial footage. One time, we flew several hours down to the Outer Banks of North Carolina to do a story on a craftsman who made one-of-a-kind duck decoys for hunters. We landed at a little landing strip as far east as you can go, by the base of the Cape Hatteras lighthouse. All it was was a slab of concrete. The man told his stories, as they always did. The camera rolled, and we knew it would be a ratings hit. Brad was a gifted video storyteller. The man insisted we stay for dinner. It was getting dark, and we would have to fly out in a less than safe situation. No worries. The man said, “I’ll just light the end of the runway with my headlights!” He did and thank God our plane popped off the bleak runway, and by moonlight we flew back to civilization. If the engine had sputtered, Brad and I would have been fish food long ago!

There were countless other adventures that Brad caught on film and that were seen by hundreds of thousands of people. Carolina Camera was one of the most popular television shows, and it was incidental that yours truly from New York was in front of the camera. Brad made me look good.

I will always remember the time I appealed to Brad’s love of flight to go up with his camera in an F4 Phantom jet to showcase the military side of life in South Carolina. As the jet rolled to a stop, there was Brad with his head in a bag. The forces of gravity and the acrobatics of the pilot got the better of him—but not before he got great film. The story was unforgettable.

I am back in Charlotte now, and the culture has changed. There are few “down home” people, a lot less chicken, grits and fried okra. It’s much less regionally unique. Too bad. Brad documented Carolina history, and he was a master at it—and I hope he never lost his North Carolina accent. I am just so sorry we have already lost him, and I did not get a chance to make him smile and remember one last time!

I welcome your comments and wish you and your family the best of health!

Andrew

Editor’s Note: This blog was first published on pharmaphorum.com.

As the numbers surviving cancer increase, the onus must be on ensuring that the pathways are in place to treat the whole patient and not just the disease, to ensure they and their families have the support necessary to aid the best transition back to everyday life.

As therapies improve, ever greater numbers of people are surviving cancer. These people need support right through from time of diagnosis and post cancer treatment. A total of 14.5 million survivors of cancer were alive in the US on 1st January 2014, with that number expected to rise to 19 million by the year 20241. Worldwide, in 2011, it was estimated that there were over 28 million people who had survived cancer within five years of diagnosis2. Further, it is estimated, based on 2012 data, that there will be approximately 14.1 million new cancer cases each year worldwide with increasing incidences of diagnosis and concomitant increases in the numbers of survivors3.

While all of this suggests good news, we need to delve further into the concept of survivorship. First, what is a ‘survivor’? The American Cancer Society defines a survivor as ‘…any person who has been diagnosed with cancer, from the time of diagnosis through the balance of life’.1 Its report goes on to further characterize the stages of cancer survivors:

– Diagnosis to initial treatment

– Transition from treatment to extended survival

– Long-term survival.
Second, we need to understand that the fight against cancer is not a solitary battle, but one that includes family members, caregivers, friends and co-workers, all of whom can effectively be called ‘survivors’ because of the tangential reach of the disease.2 Understanding survivorship must encompass the effect of a cancer diagnosis on the lives of these other groups.

More critically, as it relates solely to the clinical management of cancer, the American Society of Clinical Oncology has noted4 these emerging forces that could significantly impact patient access to care in the future:

• Demand for oncology services will grow by 42 per cent by the year 2025

• In this same time period the supply of oncologists will grow by only 28 per cent, leaving a shortage of more than 1,487 professionals

• The median size of physician practices increased from nine to 15 from 2012 to 2013, indicating an increasing consolidation and mergers of practices

• Financial pressure has been cited as the greatest threat to providing high-quality patient care.

While all of these issues impact patients and their care, the conversation obviates many of the other components of living after, or with, cancer. There are many subtleties relating to quality of life, dependent on the disease type, age at diagnosis, treatment-related side effects and the potential for secondary cancers2. Many of these issues go beyond the physician’s clinical discipline and/or comfort level, e.g. sexual satisfaction post-genitourinary cancer treatment or psychological stresses in returning to the workplace. It is the recurrent theme of treating the disease, but not the patient. Patient-centricity goes far beyond treatment modalities and must include desired quality of life expectations and the capability to return a ‘whole and entire’ person to the society they were a part of prior to the cancer diagnosis.

There will be an increasing need for primary care physicians to take over from the oncologists to provide psychological, as well as clinical, support for their patients. There will be a requirement to engage in dialogue with the patient and family to be able to provide referral to specialty services, e.g. sexual dysfunction, self-image reinforcement, guilt management.

In addition, government and insurers will have to better address the financial pressures related to both potential recurrent or secondary disease as well as the increasing cost of cost itself. As we set guidelines for the management of various cancers, it is equally obvious that the need for guidelines relating to the management of survivorship should become a priority.

Survivorship mandates more, and comprehensive, partnerships between healthcare professionals, research groups, public health agencies, financial providers and community organizations with necessary patient input to ensure that patient-centricity remains constant and consistent from ‘the time of diagnosis through the balance of life’.

References:

1 Cancer Treatment & Survivorship facts and figures 2014-15

2 PLOS blog: Addressing the Needs of Cancer Survivors: An Emerging Global Challenge

3 Cancer Research UK. All cancers combined key facts

4 The State of Cancer Care in America, 2014: A Report by the American Society of Clinical Oncology

About the author:

Virgil Simons is the founder and president of The Prostate Net, a non-profit patient education and advocacy organization committed to providing credible and actionable information that will minimize the negative impact of prostate cancer. Using experience gained as an 18-year survivor of prostate cancer and a patient advocate, over the past 16 years he has built an international organization that addresses disease risk awareness, early disease interdiction and advanced stage disease management. Contact him on Email: virgil@prostatenet.org

The power of interactive patient-driven TV.

The power of interactive patient-driven TV.

I started as a television reporter at age 22 in 1972 in Charlotte, North Carolina. I was terrified. I won a job at the largest television station in the Carolinas, and they had an audience of 300,000 people. But I overcame the butterflies and went on camera, first on film, then videotape and finally live. The only audience that I saw was usually a middle-aged videographer pointing the camera at me. But I knew there were real people, individuals, who were at home watching, and I learned to speak to them. That was broadcasting. In school, a couple of years before, I had heard the concept of “narrowcasting,” of bringing information to a very select audience. But at that time, technology and cost didn’t make it feasible. Today, more than ever, it does. And what’s really cool is that the audience can not only talk back, the viewers can broadcast—or narrowcast—back! This has great application for far-flung people with serious health conditions. Now, years after starting in journalism, I have two such conditions, chronic lymphocytic leukemia (CLL) and myelofibrosis.

As you know, since 1984 I have dedicated myself to patient education, and, in 1996, I became a patient, too. The truth is other patients have probably educated me more than I have facilitated education of them. It was other patients who connected me with specialists, clinical trials, and helped save my life. And they have supported me every step of the way. In 2015, we can step up our two-way connection in communities of people affected by serious illnesses with what you might call “interactive television.” At Patient Power, our plan is to stream many of our programs on video live and where patients can ask questions or make comments in text or on their webcam. Soon it won’t matter where they are and, ultimately, what language they speak. Leading experts in a condition—whether they be researchers, physicians, nurses, or experienced patients or care partners—will be in real-time conversation with others in the community anywhere. This has huge implications for healthcare providers, pharmaceutical companies, other stakeholders and, of course, patients.

Finally, the walls of the “black box” of healthcare will be torn down by your fingertips on your keyboard and your webcam and higher speed Internet connection. I am thrilled to be a part of this positive advance. In 2015, look for all our “town meetings” for patients to not only be streamed but where a patient-reporter will be the anchorperson for the viewing audience, where some interviews and Q&A will be done just for you. Plus, we will have live Ask the Expert sessions during the year and from medical conferences. We tried this out at ASH 2014 with Dr. James Berenson, and you can see the replay now. We’ll also be introducing the Patient Cafe™ where newly diagnosed patients can meet live on video.

The truth is broadcasters could do this with all their resources, but they have to focus on the big news and what has “mass appeal.” I feel blessed that the tools are there for us now to produce the same quality and with the same speed for audiences of people with conditions like the ones I have and where those audiences can talk back. 2015 will be an exciting year in patient communications, and I believe it will begin a transformation in the way doctors and patients interact, the speed at which research advances, and how quickly the breakthrough products are understood and used.

I welcome your comments.

See you on TV, and I look forward to hearing YOUR voice and seeing YOUR face.

Wishing you and your family the best of health!

Andrew

LUNGevityStress affects all of us in one way or another. By definition, stress is a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances.

A new year presents new challenges for people on top of everyday stressors. Whatever your life challenges are, there are ways to manage your stress so that it doesn’t become harmful to your health. This is especially important for those of us who have had cancer.

Some experts say that is the link between cancer and stress—if stress decreases the body’s ability to fight disease, it loses the ability to kill cancer cells.

“Stress doesn’t only make us feel awful emotionally,” says Jay Winner, MD, author of “Take the Stress Out of Your Life” and director of the Stress Management Program for Sansum Clinic in Santa Barbara, Calif. “It can also exacerbate just about any health condition you can think of.”

Stress may worsen or increase risk of obesity, diabetes, headaches, depression and heart disease as well. People fighting cancer may feel stress about what their bodies are going through, what their families are going through, uncertainty about cancer treatment, financial and emotional concerns.

Here are 5 things people who have had or are living with cancer can do to reduce their stress.

1)     Get Informed

Becoming well educated about your health conditions, treatment options and symptom management may reduce stress. While too much information may feel overwhelming to some, knowing your disease, recognizing your symptoms and where to get help for your side effects may help you feel more secure and supported in your cancer treatment.

2)     Express Yourself

Talk about how you’re feeling. Join a support group. Talk to family members and friends. For some who aren’t great talkers—write about your feelings in a journal or express yourself in artistic ways. Expressing to others about how you’re feeling may reduce tension and stress

3)     Get Moving

Exercise can help reduce stress. Activities such as walking can also help to relieve pent-up energy. For those who have physical limitations, light movement of arms and body can also help with circulation and reduce stress.

4)     Be Kind to Yourself and Others

Take breaks when you can. Eat nutritious foods, get plenty of sleep, and be kind and gentle on yourself—you deserve it.  Helping others can also make you feel good about yourself. Survivors in our LifeLine Support Program have reported that helping patients who were newly diagnosed actually helped them to feel better about themselves and what they had to go through with cancer.

5)     Ask for Help

There are resources available that can help you with practical and emotional issues surrounding your cancer. Start with your doctor and patient navigator. Sometimes an oncology social worker is the one who has a list of resources available in your area. Ask for help from family and friends who can step in to help with practical needs. If you have a hard time asking for help, designate a caregiver or advocate who can find you the help you need.

Katie Brown

Content courtesy of LUNGevity

People live and people die every day with cancer. Often people deal with it silently. There are no headlines. No television tributes. And then there are people in the public eye. They develop cancer, too. Some use it for publicity, for wealth, for public  sympathy. Others choose to continue to live their life with zest, […]

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Like any cancer survivor, I worry about what’s next. Am I bruising too much? Is this little “twinge” something serious? Is this just a cold, or could it be pneumonia? My wife thinks I am a hypochondriac, but she acknowledges that it can be understandable. After all, I was first diagnosed 18 years ago. I […]

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For most cancers, there are no longer “one-size-fits-all” treatment plans. And at the recent American Society of Hematology meeting in San Francisco, we heard not only that this is changing but that it is changing quickly. I almost feel sorry for the growing ranks of “nurse navigators” who will have many long nights studying just to […]

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  This is a pivotal time for many, many people living with blood-related cancers like chronic leukemias, multiple myeloma, lymphomas and myeloproliferative neoplasms (MPNs). We have been calling most of these “chronic cancers” lately, because new medicines have been coming out this year with many more in late stages of research. The hope is there […]

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It was a Harvard Business School professor, in 1997, who coined the term “disruptive technology.” Thanks to Clayton M. Christensen. He understood that new things can shake up an industry or create a new one.  The PC, cell phones, cloud computing are great examples. But in pharmaceuticals, diagnostic testing and, more broadly, in healthcare in general, I would […]

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As a patient navigator, young adult cancer survivor and former caregiver, I know what the term “empowered patient” means. It’s a concept where knowledge about your disease is powerful, and advocating for your own quality healthcare aids in your survivorship. There are a checklist of questions I can arm you with along with disease related […]

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