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Guest Post Hillary Stires

How the Patient Perspective Improved My Cancer Research and Changed My Career Path

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Hillary Stires, PhDGuest Post by Hillary Stires, PhD
Cancer Researcher and Advocate

The first time I heard the words “you have cancer,” I was sitting in the doctor’s office with my best friend Katie. We were both 28 years old. Katie had a lump removed from her breast the Monday before Thanksgiving and I was home in New Jersey a few days before the holiday to hang out with her post surgery. We were supposed to go to DSW that Wednesday morning when she got a call that her doctor wanted to see her that day.

I collapsed on the floor of my parent’s kitchen, weeping in anticipation of what we were about to embark on.

During the previous 6 months, I had been studying breast cancer as a postdoctoral fellow at Georgetown University’s Lombardi Comprehensive Cancer Center. The 6 years before that I studied at Rutgers University earning my PhD focused on breast cancer. I thought those experiences would have prepared me more for Katie’s diagnosis. Instead, I felt completely lost.

I was amazed at how little I’d actually learned about how cancer affects the person as a whole during my six years of training. For example, I could tell you how the HER2 protein makes cells grow and divide, but I didn’t know the side effects of the therapies that blocked this process or the normal course of treatment. After spending the holidays in New Jersey, including an extended week going to chemo with Katie, I returned to Washington, DC to write grants and continue my postdoc.

I noticed that working with advocates was transforming my research, and ultimately my career, as I began to factor in the human aspect of cancer into my research. More importantly, I realized that I was one of a few research scientists engaging in this kind of patient-based work.

To be fair, I started working with patient advocates just before Katie’s diagnosis — I presented my work to the Georgetown Breast Cancer Advocates (GBCA) a few months after starting at Lombardi and submitted a Susan G. Komen grant that required a patient advocate mentor. I’d also started tweeting with #BCSM (Breast Cancer Social Media) on Monday nights, which was a surprise blessing as that community became my support system following Katie’s diagnosis.

Over time, Katie’s treatments came to an end, but I continued working with patient advocates online and in person. I attended conferences and sat with the patient advocates instead of my scientist peers, where I was able to explain complicated concepts about breast cancer and helped clarify confusing topics. I noticed that working with advocates was transforming my research, and ultimately my career, as I began to factor in the human aspect of cancer into my research. More importantly, I realized that I was one of a few research scientists engaging in this kind of patient-based work. This led me to explore ways to improve relationships between patient advocates and researchers so other scientists could experience similar benefits.

I started following the National Coalition for Cancer Survivorship (NCCS) on Twitter after I met some of the #BCSM crew at a live “tweet up” in DC during the NCCS Cancer Policy and Advocacy Team (CPAT) Symposium in 2018. I was amazed at how much the mission resonated with me from a personal level, but also as a cancer research scientist. I was already thinking about pivoting my career into health policy, but I also knew I wanted to keep building relationships between patient advocates and my community of research scientists. So, I applied to NCCS’ Elevating Survivorship program to become an Elevate Ambassador and develop a forum to encourage the development of those relationships.

My hope is that many more research scientists, and not just those who hear the words “you have cancer,” will engage with cancer advocates early and often, recognize the value of these relationships, and incorporate that knowledge into their research.
I was thrilled when I was selected to be an ambassador and the experience has exceeded my expectations. I attended our two-day training session in Arlington, VA, and was so proud to be part of such an inspiring and dedicated group of people. We shared ideas about the programs we were building, learned about the importance of survivorship for the cancer community, and established friendships that I know I’ll have for a lifetime.

The goal of my project is to build out a program for patient advocates and cancer research scientists (mostly graduate students, postdocs, and oncology fellows) to meet and learn from one another. Last month, on July 12, I oversaw the first workshop for the Cancer Trainee Advocate Program (CTAP) at Lombardi. We had all the graduate students and some of the postdocs from the tumor biology program and about 12 patient advocates – most of whom had been or were currently being treated at Lombardi.

After a presentation on the value of working together, patient advocates and research trainees had roundtable discussions with a list of questions about research, the patient perspective, and ways to work together to guide the discussion. (Many of the questions for the roundtable discussion came from the patient advocate community on Twitter — many thanks to all their support!)

The trainees presented posters about their work and advocates asked questions for clarity and about impact. Additionally, the advocates had an opportunity to walk through the research labs and see what cancer cells look like in a culture dish. The workshop was a great primer to start building relationships to improve research through collaborative grant submissions and other cancer advocacy work.

My favorite part about this program is that the goals benefit both groups: Patient advocates can share their experiences and learn about cancer research from the people completing it, and trainees improve their science communication skills when explaining their research and gain a perspective about cancer they normally don’t learn about in a classroom. The next phase is to have a few others pilot the program at their institutions. After that, I’ll work with a handful of research trainees and patient advocates to build a website and a toolkit so other institutions can emulate the program.

My hope is that many more research scientists, and not just those who hear the words “you have cancer,” will engage with cancer advocates early and often, recognize the value of these relationships, and incorporate that knowledge into their research. Not everyone confronts cancer as closely as their best friend, loved one, or themselves, and I hope fewer will. But I’m grateful for the catalyst it was in my life and my work to help facilitate more relationships between patient advocates and research scientists to improve cancer research.

# # #

About the Author: Dr. Hillary Stires completed her PhD at Rutgers University and is a postdoctoral research fellow at Georgetown University’s Lombardi Comprehensive Cancer Center, studying how hormones influence breast cancer development and therapy resistance. Because of her best friend’s breast cancer diagnosis and her experiences tweeting with patient advocates, she decided to leave academia for a career in health policy but continues to work to improve relationships between patient advocates and research scientists as an NCCS Elevate Ambassador.

You can find Dr. Stires on Twitter at @HillStirSci.

Note: The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

Exercise nutrition blog series

Running: Fuel for My Body and Soul After Cancer

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Breakaway from CancerExercise, Nutrition, and Cancer Survivorship Blog Series
Since 2005, NCCS has been a partner in Breakaway from Cancer® (BFC), sponsored by the Amgen Tour of California. As part of this year’s partnership, NCCS developed a blog post series, written by cancer survivors and experts, focusing on health and wellness during and after treatment. Whether you are a patient, survivor, or family member, we hope you find this series helpful and ask that you share it with your networks.

Xenia RybakGuest Post by Xenia Rybak
Cancer Survivor

Being diagnosed with cancer stinks. It is a traumatic experience that will ripple through your life for years to come.

For me it was no different. I was diagnosed with endometrial cancer at 31 and underwent treatment for a year, which included high doses of steroids. After almost two years of remission my cancer returned and had begun to spread to my uterus. My oncologist advised me that a hysterectomy was needed and within a few weeks I underwent a radical hysterectomy at 34.

No google searches or consultations with your oncologist or nurse practitioner can prepare a young woman for what her body will experience during the months that follow.

I was not in control of anything. I did not know how I would react emotionally to many situations. My body was not my own, the doctors knew more about me and I hated it. Nothing made sense. My life did not return to normal – everything fell apart and I hit rock bottom.

Running might not be your thing, but find your thing. Find the activity that makes you rediscover the parts of your body that cancer silenced. Even if it is laying on the floor and stretching. Whatever you do find, start small.
During treatment and remission, I discovered spinning and it was my relief for a few years. In the dark I would let the world around me disappear and I would lose myself in the music. But returning to the gym after surgery was harder for me. It reminded me of my previous life. I could no longer find solace on the bike, it caused me more pain than relief.

About 2 years after my surgery I found a “Cancer to 5K” running program. I had never been a runner or even thought about running, but when this opportunity presented itself, I thought “why not?” This would be the best place to begin while being surrounded by other cancer warriors.

“Cancer to 5K” was organized by the Ulman Foundation, a young adult organization based in Baltimore, MD. They designed the program to run 12 weeks, meet twice a week, led by coaches, and culminate in a 5K goal race.

While taking part in the biweekly training, I learned that the Ulman Foundation was also recruiting for their yearly “Point to Point Experience.” This included walking/running from Baltimore, MD to Key West, FL and visiting various cancer centers along the way. During the journey the participants would create a community among themselves by sharing their cancer stories, how cancer touched their lives, what brought them to the Ulman Foundation, and every other conversation that can occur in a car.

It was during this time that I found a unique group of people who found it amazing that I was just beginning my running journey. They were supportive of me when I shared my cancer story, cried when I cried, and laughed at all the idiosyncrasies that can occur during cancer treatment. But most importantly, they became my friends and were able to understand and support me.

A few weeks after the “Point to Point Experience,” the “Cancer to 5K” goal race occurred, which was the final 3 miles of the NYC marathon. This was my first ever race. I was so nervous, but also so excited. It was exhilarating to experience streets of NY that I had walked and driven so many times before, but now I was running down them, just not that quickly. I accomplished something. I proved to myself that my post-cancer body could achieve new milestones. It was so surreal.

I realized that during the weeks of running and walking, I discovered a new side of myself. It was a side that I never thought would exist but one that I welcomed, apprehensively at first. I did not look like a runner, I was not as fast as the other members of the 5K team or during the goal race, but that didn’t matter. What mattered was how I felt when I ran and after. How my body continued to surprise me on what it could overcome, I was amazed basically that my legs were still moving. And guess what, other runners don’t care what you look like or how fast you are, all they care about is their own performance. However, when you get close to that finish line, it is lined with other runners cheering you on.

Within hours of pictures of my goal race being posted on social media, friends began asking when my next race was. I never thought about another race, but then the wheels began turning. I signed up for another 5K, and then thought about entering a longer race because recipients received a medal and earning a medal is really awesome. Thus, one 5K turned into a 15K and then a 5-mile race. Then came the ultimate “Why not?”—the chance to run the NYC Marathon in November 2019. That is 26.3 miles. I accepted the challenge and am in the process of training. When the marathon starts on November 3, it will be one year from my original 5K. No one knows how everything will turn out. All I can control is my training schedule and frame of mind. I conquered cancer—what’s 26.3 miles?

I can’t tell you that it is easy, because it’s not, but try it. Running might not be your thing, but find your thing. Find the activity that makes you rediscover the parts of your body that cancer silenced. Even if it is laying on the floor and stretching. Whatever you do find, start small. A few minutes a day. Work it into your schedule—while watching TV, lift a water bottle above your head. Don’t worry about what it looks like, you beat cancer. Now you have to take control of your health and live the rest of your life the best way possible.

# # #

About the Author: Xenia Rybak is an advocate focusing on the young adult cancer experience and mental health. She is in remission for uterine cancer after undergoing a radical hysterectomy in 2016 at the age of 34. Xenia is an active NCCS Cancer Policy and Advocacy Team (CPAT) Member, as well as an Elevate Ambassador for NCCS’ Elevating Survivorship initiative. She is her district’s legislative representative for the American Cancer Society – Cancer Action Network and an active volunteer with the Ulman Foundation based in Baltimore, MD.

In addition to advocacy, Xenia is a practicing art therapist in New York City and co-hosts a mental health based podcast “Firefly and Phoenix.” She is also training for her first marathon and managing her dog’s Instagram account @rupert_to_the_rescue.

Note: The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

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Amgen Breakaway Challenge

Breakaway ChallengeThis year, Amgen launched the Breakaway Challenge, where participants can turn their walking, running, or cycling miles, into supporting the fight against cancer and heart disease.

Learn more and sign up today at AmgenBreakawayChallenge.com

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Moving Through and Beyond Stage IV Colorectal Cancer

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Breakaway from CancerExercise, Nutrition, and Cancer Survivorship Blog Series
Since 2005, NCCS has been a partner in Breakaway from Cancer® (BFC), sponsored by the Amgen Tour of California. As part of this year’s partnership, NCCS developed a blog post series, written by cancer survivors and experts, focusing on health and wellness during and after treatment. Whether you are a patient, survivor, or family member, we hope you find this series helpful and ask that you share it with your networks.

Stacy HurtGuest Post by Stacy Hurt, MHA, MBA
Cancer Survivor

“But I’m an athlete and a non-smoker. I do everything right!”

Those were my first words to the gastroenterologist who told me that the 11cm tumor in my rectum was “most likely cancer.” You would’ve thought I’d learned the whole “life isn’t fair” lesson when my son, now 13 years old, was diagnosed with a rare genetic chromosomal disorder that rendered him without the ability to walk, talk, or care for himself in any way. But I didn’t. Or at least I thought there was no way lightning could actually strike twice. But it did.

In a million years, neither I nor any of my doctors would’ve guessed that symptoms of blood in my stool, abdominal pain, and fatigue would lead to a diagnosis of metastatic stage IV colorectal cancer at age 44; not for someone with zero family history, zero risk factors, and who ate healthy, was fit, and lived an active lifestyle. When I presented with symptoms, thank goodness my PCP didn’t dismiss them as internal hemorrhoids or irritable bowel syndrome (IBS), which is what she’d hoped they were when she sent me for a colonoscopy to “rule out anything more serious.”

I moved as much as I could—whether that was yoga, walking, stretching, or planking with my chemo fanny pack on.

A subsequent PET scan came back about as serious as it could get: tumors in my rectum, liver, lungs, and lymph nodes; 27 in total. When I asked my diagnosing oncologist what my chances were, he answered me with, “I don’t have a crystal ball. A lot of this depends on you,” (which is a nice way of saying “not very good”).

As I told you above about my son, this wasn’t my first rodeo with a less than hopeful prognosis. I decided on Day 1 that I was a survivor. So I replied back emphatically, “Well, if this depends on ME, then I’m going to tell YOU that I am going to KICK ASS!” And kick ass I did. As much as the doctors were shocked and dismayed at my diagnosis, those same doctors were shocked and delighted at my healing. Three years later, after 55 chemotherapies, stereotactic body radiation therapy (SBRT), two surgeries (one of which was an emergency to repair a nicked blood vessel and internal bleeding which caused cardiac arrest) and every side effect imaginable, I have emerged NED (no evidence of disease).

I converted a 20+ year career in health care operations, sales, and management to one now in patient advocacy, speaking, and consulting. The most common question I’m asked is, “What did you do to beat stage IV colorectal cancer?” Other than an unprecedented response to treatment, I credit nutrition and exercise, and in fact, I believe they went hand in hand.

I researched foods that specifically fought colorectal cancer, such as red grapes, squash, broccoli and cruciferous vegetables, kale, and tree nuts and ate them like they were going out of style. And I kept moving, particularly during treatment weeks to circulate the chemotherapy to my tumors to saturate and destroy them. I moved as much as I could—whether that was yoga, walking, stretching, or planking with my chemo fanny pack on. I also believed that movement expelled the chemotherapy from my body more readily, decreased toxicity and side effects, and helped improve recovery. In my off weeks, I moved even more and did so more vigorously. Not running marathons, but aiming to get my heart rate up and break a sweat.

This year marks five years from diagnosis in 2014 and two years of a “chemo break” from maintenance “chemo for life.” I do circuit training 3 to 4 days a week with a mix of cardio and resistance. I’m still under close monitoring for my disease with regular bloodwork and scans, and therefore some days I need to modify my movements. But I know from data and from listening to my body, that regular exercise is decreasing my chance of recurrence, building my strength, decreasing my anxiety associated with PTSD from treatment, and enhancing my overall quality of life and survivorship. The gym is my social life too—a lot of my friends attend the same gym—since I don’t get out much due to care of my son with special needs and disabilities.

My mantra to patients fighting cancer is simple: you have one body that has to fight the deleterious effects of both the cancer and its associated treatments. Make it as strong and resilient as you possibly can through nutrition and exercise. There was no explanation for what happened to me, but if I wasn’t as fit as I was going into this, I wouldn’t be alive today to come out of it. It’s never too late to take charge of your health.

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About the Author: Stacy Hurt, MHA, MBA, is an accomplished 20+ year health care executive. Her experience spans across various functions in the physician practice management and pharmaceutical industry. Two life changing challenges detoured Stacy’s career path as she imagined it, but have culminated in her current patient advocacy and consulting work. Stacy is a stage IV colorectal cancer survivor who fights for those with both visible and invisible disabilities who perhaps cannot stand up or speak for themselves. Stacy resides in Pittsburgh, PA with her husband and two sons.

Twitter: @Stacy_Hurt
Instagram: @Stacy_Hurt
Facebook: Stacy Hurt

Note: The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

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Learn more and sign up today at AmgenBreakawayChallenge.com

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Cancer at 30: Reflections on Post-Traumatic Growth

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Breakaway from CancerExercise, Nutrition, and Cancer Survivorship Blog Series
Since 2005, NCCS has been a partner in Breakaway from Cancer® (BFC), sponsored by the Amgen Tour of California. As part of this year’s partnership, NCCS developed a blog post series, written by cancer survivors and experts, focusing on health and wellness during and after treatment. Whether you are a patient, survivor, or family member, we hope you find this series helpful and ask that you share it with your networks.

Guest Post by Chris Bordoni
Cancer Survivor

“Dig deep within yourself, for there is a fountain of goodness
ever ready to flow if you will keep digging.”
—Marcus Aurelius

In December of 2015, I was in the prime of my life. I was thirty years old, recently married, and had just launched a new business.

Like most young people, I didn’t expect to get sick. I exercised regularly, ate reasonably well, and otherwise tried to take care of myself.

On December 19th, I went to the doctor. I had a small lump. I assumed it was nothing. How could it not be nothing?

After a few tests, the young resident found me. We were alone. He was nervous.

Cancer? Are you sure? How do you know? Had we caught it early? From that moment, my life was a blur.

A first surgery. Then new imaging. Then very bad news: The disease had spread to my abdomen and lungs. It was late stage testicular cancer, stage 3B. My odds of survival: Roughly 50-50.

A first round of chemotherapy, followed by a second. A third. Then a fourth.

Three months passed. I was barely alive, but the golf-ball sized tumors had nearly disappeared.

After waiting a few weeks for my immune system to bounce back, I had a major surgery. Retroperitoneal lymph node dissection: A jumble of words describing the process of taking me apart, scouring my body for signs of cancer, and then putting me back together. With 50 staples in my abdomen, I could barely move. I was a mess, but I had beaten cancer.

———

The majority of people who experience trauma report a sense of new opportunities, improved relationships, greater personal strength, more appreciation for life, and spiritual development.
Three years have passed since I was officially “cured,” but cancer challenges me every day.

Some side effects are minor annoyances. When lying in bed or sitting in a quiet room, there’s a constant ringing in my ears. When I touch something cold or get nervous, my hands blanch and go numb.

Other changes are more profound, more damaging.

I’m constantly tired, making it difficult to keep up with my young daughter or my most ambitious clients. I also struggle with memory loss. At work, I find myself reading the same sentences over and over, searching for comprehension that used to come easily. Socially, I’m often forced to pretend that I remember a past conversation, even if it was just the day before.

Yet when people ask me about cancer, I tell them that it was the best thing that ever happened to me.

How so?

Cancer helped me to leave the cult of perfectionism. Being sick was messy, and perfection was unattainable. The more I tried to exert control, the more frustrated and out of control I felt. As I realized this, I wondered where else in my life the pursuit of perfection had been counter-productive. I’ve come to accept many of the things that I cannot control. I’ve found greater peace in my life.

Adversity challenged my understanding of compassion. Spending time amongst the unwell and their loved ones taught me this: To assume that I can comprehend the experience of another, even for the briefest of moments, is pure arrogance. Getting sick was a personal call to withhold judgment—to choose to believe that each person is doing his or her best—regardless of how it might look from my narrow view of the world.

Getting sick pushed me to seek greater meaning in my life. After being told that my chance of living was essentially a coin-flip, I began to look at how I wanted to spend the rest of my life. Today, I am much prouder of the things on which I choose to work, the footprint I’ll leave behind on this planet, and what I offer up in each of my relationships.

Cancer may have added new constraints to my life, but it also offered a chance to let go of old limitations. It gave me a chance to create a new future.

———

As it turns out, my experience largely reflects what psychologists call post-traumatic growth. According to work first conducted by Tedeschi and Calhoun, and since replicated in a range of settings, the majority of people who experience trauma report a sense of new opportunities, improved relationships, greater personal strength, more appreciation for life, and spiritual development.

To be clear: I’m fortunate to be alive. I humbly recognize that many others no longer share this privilege. I also recognize that we all grow and heal at our own pace, and in our own way. I’ve had many dark periods over the last three years, and I deeply respect the path that each person faces.

With that said, I’d like to share a few practices that helped me to grow both during and after getting sick:

  • Reflect. Growth happens during life’s quiet moments. During chemotherapy, I spent 6 to 8 hours a day at an infusion center, which gave me an opportunity to read, meditate, and begin making sense of my experiences. I’m fortunate to have had this time and continue to look for ways to bring stillness into my life.
  • Reframe. While we may not be able to choose what happens to us, we can always choose our response. Having less energy is a challenge, but it is also a constant reminder to prioritize the things I care about most. Similarly, difficulty remembering has helped free me from the past; I spend far less time ruminating on what might have been and more time enjoying the present moment.
  • Explore. When confronted with the limitations of current science and thought, I’ve sought alternative sources of wisdom. I’ve become my own experiment. I’ve dabbled with acupuncture, massage-therapy, Original Strength (of which I’m a huge fan), various diets, sobriety, and eliminating caffeine. I’ve also explored mindfulness, guided meditations, traditional religions, new age spirituality, stoicism, positive psychology, minimalism, and many other paths. In the process, I’ve found a handful of practices that resonate with me and have improved my well-being.
  • Commit. While exploration opened my eyes to new possibilities, focus and discipline have allowed me to realize the benefits. For example, there’s no secret to eating better—more fruits and veggies, fewer animal products, only occasional sweets and processed foods—and yet I stumble or look for shortcuts just the same as everyone else. With continued persistence, however, I’ve slowly been able to change my habits and begin living a healthier, more sustainable lifestyle.
  • Connect. Getting sick reaffirmed my belief that there’s no replacement for real-life relationships. Family, friends, and acquaintances were there when I needed help. In turn, being vulnerable deepened many of these connections. As I’ve tried to make positive changes in my life, the gentle encouragement and accountability of others has allowed me to be more successful. And finally, connecting with others has provided new opportunities for me to give back and explore new interests.

Through my experiences, I’ve come to understand that each of us—whether as individuals, colleagues, family members, or neighbors—will face setbacks and adversity. When the time comes, I hope that each of us can remember that there’s a fountain of goodness within us if we will keep digging.

# # #

About the Author: Chris Bordoni is the founder of Bordoni & Company, a social sector consultancy committed to helping clients imagine the programs, initiatives, and movements for a better world. He currently lives in Northern Virginia with his wife and daughter.

Note: The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

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Finding Healing Hope – By Wendy S. Harpham, MD

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Breakaway from CancerExercise, Nutrition, and Cancer Survivorship Blog Series
Since 2005, NCCS has been a partner in Breakaway from Cancer® (BFC), sponsored by the Amgen Tour of California. As part of this year’s partnership, NCCS developed a blog post series, written by cancer survivors and experts, focusing on health and wellness during and after treatment. Whether you are a patient, survivor, or family member, we hope you find this series helpful and ask that you share it with your networks.

Guest Post by Wendy S. Harpham, MD, FACP

Let’s discuss “hope.” After a cancer diagnosis, few topics are mentioned more…and discussed less. That’s a problem because what you hope for may mean the difference between enjoying life or feeling miserable. Maybe even between life and death.

So how do you find hope? Not just any hope, but healing hope, namely hope that helps you get good care and live as fully as possible. Hope that helps you live your best life.

The good news is there’s always something good to hope for. That said, finding the best hopes for you can be hard work. These insights and tips may help you find healing hope through and beyond cancer.

Hope can be defined as “a feeling linked to a belief the desired outcome can happen.” It’s a feeling you have in the present about an uncertain future outcome. You experience “hope” when certain brain cells fire in a certain pattern. Consequently:

  • Anything influencing your beliefs about the desired outcome may affect your hope.
  • Anything affecting your perception of your future may affect your hope.
  • Anything altering brain function may make it difficult to experience hope.

With these ideas in mind, here’s one approach to finding healing hope.

  1. Make a list of your hopes, in order of priority. You can hold on to many different hopes at the same time.
  2. Assess whether your hopes are based on accurate information. For your hopes to lead you to wise decisions, you need to know whether your beliefs and perceptions are based on sound information. Discuss with your loved ones and your healthcare team what you’re hoping for. Your physicians can help you know the likelihood of achieving what you’re hoping for, such as improvement of a symptom or traveling for a future event. Counselors can share facts that help you know if it’s wise, say, to hope to keep your diagnosis secret from your (grand)children.

  3. Determine which hopes are healing. In addition to discussing with your healthcare team the facts related to your hopes, ask yourself, “Is this hope motivating me to proper action?” For example, if you develop a worrisome symptom, you may hope it’s insignificant. That hope is healing if it calms you while you take proper action and call your doctor. That same hope is harmful if it motivates you to wait for the worrisome symptom to resolve, instead of reporting it.

    In situations where there’s nothing you can do to influence the outcome, ask yourself, “Is this hope helping me wait?” Keep in mind that the same hope that comforts others may make you anxious.

  4. Let go of harmful hopes. Hope can tempt you to make unwise decisions, decline effective therapies, or pursue unnecessarily dangerous paths. For instance, it’s healing to temporarily let go of the hope of avoiding scans when imaging studies are needed for you to make the best decisions. And, it’s best to let go of hope of continuing all your pre-cancer routines if that hope leads you to skip medications or checkups.

    Letting go of a hope takes courage and fortitude. After all, hope feels good and seems helpful and healing in the short run, even if leading you down a dangerous path. In addition, it’s natural to want to avoid grief, the normal response to letting go of anything—including hope. Input and support from your healthcare team and loved ones may help you recognize harmful hopes and then let them go.

  5. Choose which healing hopes to focus on today. Try focusing on short-term hopes where you can influence the outcome. Acting on those hopes may help you feel more in control. Fulfilling any of those hopes—“I hoped to walk for 10 minutes, and I did it!”— should give you an emotional lift and help foster a general sense of hopefulness.
  6. Set the stage for healing hope. The pursuit of healing hope is an ongoing effort. Work with your healthcare team to (1) figure out what to hope for and (2) address anything possibly interfering with normal brain functioning, such as pain, medications, insomnia, fear, and stress. Surround yourself with inspirational messages, images, colors, and music. Read stories by survivors who overcame similar challenges. Envision the best possible outcomes. Spend time with people who lift your spirits; avoid those who drag you down. Find safe places to openly grieve all your losses, so you can embrace all the joys that remain.

Whatever the situation, there is always something good to hope for. Healing hope helps you live your best life today, tomorrow, and every day.

# # #

About the Author: Wendy S. Harpham, MD, FACP is a 28-year survivor and an award-winning speaker and author. Her eighth book, Healing Hope—Through and Beyond Cancer, offers hard-earned wisdom on finding the best hopes for you.

Blog on Healthy Survivorship: wendyharpham.com/blog
Twitter: @WendyHarpham
Facebook: Dr. Wendy Harpham on Healthy Survivorship

Note: The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

Amgen Breakaway Challenge

Breakaway ChallengeThis year, Amgen launched the Breakaway Challenge, where participants can turn their walking, running, or cycling miles, into supporting the fight against cancer and heart disease.

From May 1 to June 12, for every mile you walk, run, or ride, $1 is donated to Breakaway partner organizations like NCCS. Learn more and sign up today at AmgenBreakawayChallenge.com

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Diagnosed with Cancer? Consider Living Life Like a Professional Cyclist

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Breakaway from CancerExercise, Nutrition, and Cancer Survivorship Blog Series
Since 2005, NCCS has been a partner in Breakaway from Cancer® (BFC), sponsored by the Amgen Tour of California. As part of this year’s partnership, NCCS developed a blog post series, written by cancer survivors and experts, focusing on health and wellness during and after treatment. Whether you are a patient, survivor, or family member, we hope you find this series helpful and ask that you share it with your networks.

Guest Post by Mark Corroto
Cancer Survivor

“Ask not what your oncologist can do for you, ask what you can do for your own health” (with apologies to JFK’s 1961 inaugural address).

When the oncologist delivered the bad news, I was not fazed. That’s probably because it was my second cancer diagnosis. I asked “OK, what’s my role? What can I do?” “Nothing,” he said, “I’ll administer your treatments.”

Wrong answer, but I should have guessed this, since he carried a flip phone and probably has a dial-up modem.

I say “wrong answer” because the passive patient era—accepting treatment as if on a predetermined conveyor belt—must come to an end. The future of oncology should require that patients play an active role in their survival.

Find a decent activity and sleep tracker, and watch yourself improve. It doesn’t matter where you start, or at what level. Celebrate all victories, be it taking the stairs instead of the elevator or perfecting your downward dog.

I recommend those diagnosed with cancer consider living life as if they are a professional cyclist. Ok, not racing 100 miles and climbing 10,000 feet of elevation, but attending to their minds and bodies as if preparing for the Amgen Tour of California.

Cyclists look for every edge they can proffer to defeat opponents. For example, World Champion Peter Sagan is said to get 9 hours of sleep a night, and many cycling teams are adding meditation to their workout schedules. Athletes train and race better when they eat nutritious foods and balance their bodies by getting proper sleep and reducing stress. Athletes call these “marginal gains.”

The very same strategies can be applied to cancer survival.

Recent studies suggest exercise in between chemotherapy sessions makes the treatment more effective, lessens side effects, and can even reduce the number of sessions. Same for those yet to undergo radiation and/or surgery. Why did my oncologist not tell me about these? Maybe because he was too busy, and maybe because he had no training in exercise physiology and nutrition.

The fact is, there is nothing better for the body (athlete or survivor) than a good night’s sleep. Which can generally be attributed to getting some exercise, preferably outside in nature. These practices have been found to greatly reduce the incidences of recurrence, because sleep fosters natural killer cells (NKC) that attack cancer.

Cancer survivors certainly have a lot on their plates, but when we are diagnosed, during treatment, and after treatment, there is an opportunity to focus on your body/mind and create new healthy habits. Although a cancer diagnosis initiates a stressful sprint, you eventually realize life is actually a multistage grand tour and as a survivor, you are an endurance athlete. Maybe the ultimate endurance athlete.

So, what can give us these marginal gains, these competitive edges over cancer? First of all, exercise: strength, balance, and aerobic conditioning. After exercise, recovery becomes essential. That’s where good nutrition, proper hydration, and stress reduction come into play. Let me again misquote a legend, Yogi Berra: “Cancer survival is 90 percent mental. The other half is physical.” Don’t discount a healthy meditation practice or spiritual life as building blocks of your survival regime.

The key is to find something that works for you. Think about it—you have the rest of your life to find your activities. Walk to the coffee shop instead of driving, run a 5K, bike a century (or your age) in miles, try yoga, tai chi, qi gong, acupuncture, reiki, dance, massage, journaling, poetry, hypnosis, or forest bathing (yes, it’s a thing).

Movement, good nutrition, and great sleep reduce inflammation and slow stress hormones. Doing these with a friend doubles their effectiveness. Well, maybe not the sleep component (or does it?).

Find a decent activity and sleep tracker, and watch yourself improve. It doesn’t matter where you start or at what level. Celebrate all victories, be it taking the stairs instead of the elevator or perfecting your downward dog. Each marginal gain you add moves you one step higher on the survivor’s podium. Ask not what your oncologist can do for you; the other half is up to you.

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About the Author: Mark Corroto is not a professional cyclist, but he loves to race his bicycle. He’s also not a doctor and he doesn’t play one on TV. After being diagnosed with a myxoid liposarcoma in 2014 and chronic lymphocytic leukemia (CLL) in 2016, he read many books (big ones, some without pictures) and scholarly articles before founding Fear Less Survivors Cancer Coaching in 2018. Mark can be reached at FearLessSurvivors@icloud.com.

Listen to Mark’s interview on the Reach Beyond Cancer podcast »

Note: The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

Amgen Breakaway Challenge

Breakaway ChallengeThis year, Amgen launched the Breakaway Challenge, where participants can turn their walking, running, or cycling miles, into supporting the fight against cancer and heart disease.

From May 1 to June 12, for every mile you walk, run, or ride, $1 is donated to Breakaway partner organizations like NCCS. Learn more and sign up today at AmgenBreakawayChallenge.com

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Introducing PatientTrueTalk.com – A Way for Advocates to Directly Help the Newly Diagnosed

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Dan Engel

Dan Engel

By Dan Engel
Founder, Patient True Talk

Before writing this guest blog for NCCS, I read some other blog posts to get a feel for what would be interesting to this audience. The December 20, 2018, post entitled “Remembering Jennifer Friar Groves” really moved me. I’m naturally drawn to stories of perseverance, of people who give way more of themselves than they rightfully should, especially during times of severe adversity. We can learn so much from these individuals about how to be a better person and help others. Reading Shelley’s tribute inspired me to try harder and make a bigger difference.

So with that, I’d like to share with you a new way to pay it forward and directly help the newly diagnosed.

Think back to that moment when you were told you have cancer. The doctor informs you of your treatment options and discusses whether surgery, radiation, chemotherapy, a clinical trial, or some combination thereof is the best path forward. Time is of the essence and you need to make a decision soon. Aside from the people in the room with you (your doctor, nurse and spouse/partner/caregiver/friend), where can you turn for objective advice?

“I believe that there are many survivors like myself who provide informal advocacy on an ad-hoc basis all the time, and who would love to be part of a more organized effort to help fellow patients and their families. The only thing missing is the technology platform to aggregate those survivors and their cancer experience. Patient True Talk fills that void.”

When I was first diagnosed with melanoma in 1999, there were few, if any, options. Whether they were helpful was another story. Some recommended I find a support group specifically for melanoma. What chance was there that I could find a support group nearby with an imminent meeting where there was someone in attendance who could relate to my specific situation? I didn’t think it likely and never sought one out.

Today, there are various online communities that offer support. Like a live support group, but you still need to hope that there is someone with relevant experience monitoring and reviewing your online community in the time frame you need. You may then need to wade through a multitude of responses to your post and hope there is helpful advice. I do believe these resources are extremely valuable. If you’re like me, however, you may want to cut to the chase and find someone who experienced exactly what you are facing, and then reach out for a private conversation to share information and have questions answered.

My name is Dan Engel and I founded Patient True Talk to solve this pressing issue. I am a stage four metastatic melanoma survivor who collectively has endured ten operations, gamma knife surgery on a brain metastasis, radiation treatment, six clinical trials and seven years of a maintenance clinical trial. I’d like to think that my medical record, and the fact that I’ve read and signed well over ten informed consent forms (one for each trial and each amendment), gives me some credibility as an expert on the cancer patient experience, with a particular focus on clinical trials.

When I was diagnosed and faced my first clinical trial, I desperately wanted to speak to someone who went before me. Among other things, I wanted to know about side effects, life during treatment, state of mind, pain, etc. Basically, everything I read about in the informed consent form. I wanted to know what to really expect from a patient’s perspective, not that of a nurse or doctor. I understood that my experience by definition would be different, but relished that opportunity to speak with a fellow patient. During the countless time I’ve spent in infusion rooms, I made sure to speak with anyone else who might need a friendly ear.

Launched last year, Patient True Talk is the only patient-to-patient registry where patients and/or their caregivers can create profiles with as much information as they feel comfortable sharing, and find matching profiles based on algorithms created by some of the country’s top clinical oncologists. Patients/caregivers can also search along their diagnosis/treatment parameters, refining their search based on the results provided. They can then send secure messages directly to those who they believe represent the closest match. Once a connection is made, the two parties can speak off-line and hopefully form a friendship. My profile is the first “patient advocate” included on the site.

I believe that there are many survivors like myself who provide informal advocacy on an ad-hoc basis all the time, and who would love to be part of a more organized effort to help fellow patients and their families. The only thing missing is the technology platform to aggregate those survivors and their cancer experience. Patient True Talk fills that void. To be effective, however, the site needs thousands of survivors who battled every type of cancer to register as “patient advocates” to be available for the newly diagnosed and/or their caregivers.

I’m so pleased that NCCS agreed to collaborate with Patient True Talk to expand its advocacy reach to impact individual patients. My call to action is this: if you are or know a survivor, please register or encourage others to register on PatientTrueTalk.com.

P.S. During my two years fighting Stage 4 melanoma, I formed and launched the Miracle League of San Diego, a non-profit organization that provides children with special needs the opportunity to play baseball in an organized league. If you’d like to learn more about my trials and tribulations (pun intended), check out my book at www.thrivingthrucancer.com.

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About the Author

Dan Engel was diagnosed with stage 4 melanoma in November 1998. He founded Patient True Talk in 2016 to solve one of the pressing issues patients and their caregivers face in the cancer world — a means to connect to other patients, especially when considering and deliberating over treatment options.

Note: The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

NCCS Blog Guest Post

A Medical School Perspective: Beyond the Science, We Must Learn to Communicate with Patients

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Nainika Nanda, MDBy Nainika Nanda, MD
Otolaryngology Resident
University of Wisconsin-Madison

Survivorship. What does this mean? Oncology highlights patients currently battling cancer. However, survivorship encompasses a longer timeline. Cancer requires lifelong care, which is best achieved through proper doctor-patient communication. This relationship is a keystone of medicine. Unfortunately, that focus can be lost in the sea of information medical students must master.

A common analogy for medical education is “drinking from a fire hose.” In having to learn this quantity of information at this pace, curricula are classically centered on textbook knowledge in the earlier years. My first year of medical school required ten hours of physician shadowing. During my second year, the hours of patient contact increased, as we conducted patient interviews every 1 to 2 weeks. They were often during peak exam time and focused on complex patients with medical issues beyond our previous scope of exposure. So, our effort was inevitably directed towards learning the science of medicine—diagnosis and treatment—rather than the art of medicine, puzzle-solving, and empathetic interactions.

Understanding the science and getting the treatment right is crucial, but that’s only part of the equation. We as physicians must also remember the humanity of every patient and loved one. We need to be better equipped to serve as supportive, empathetic, and honest advisors to patients.
In fact, topics vital to oncology—such as end-of-life and palliative care discussions—are frequently cited as subjects that entering residents do not feel adequately prepared to handle. My school focused on these topics with a couple of lectures in a single one-semester course during our four years. With the demands of the training and loss of focus on individual patients, students often lost sense of why they chose to pursue medicine.

I had the honor of participating in the CUPID (Cancer in the Under-Privileged, Indigent, and Disadvantaged) program in the summer after my first year of medical school. This fellowship through Sidney Kimmel Comprehensive Cancer Center and Johns Hopkins Medicine created opportunities to work on research in diagnostic tools for pancreatic cancer, shadow clinicians in the operating rooms and clinics, and be introduced to NCCS.

Having had minimal direct patient interaction in my education hitherto, these experiences were invaluable. I saw firsthand how important the clinician is to the cancer patient and their family. In the following years of medical school, I was able to seek out further exposure to clinicians handling such complex situations, because I had learned of the value of these experiences to my education.

Yet, one of the most influential experiences was at a metastatic breast cancer retreat hosted by Johns Hopkins Hospital for patients and spouses, which I attended during my fourth year of medical school. This weekend-long event created an atmosphere outside of the clinical setting for patients to hear each other’s stories without physician interaction inadvertently directing focus to therapy options. Patients welcomed me, sharing deep, personal stories of how their illnesses were impacting their lives and relationships with their families. They were eager to provide feedback to a budding physician based on interactions they had with physicians during their care, some heart-warming and some devastating.

Clinicians are devoted to their patients’ well-being. Yet so often, the challenges of providing high-quality care often rely on using the limited time available per patient appointment, often 15 to 20 minutes, to discuss complex topics. These concepts—complex therapeutic regimens, the concept of a lifetime illness, and advanced directives and end-of-life care—are not addressed in the early part of our training and take years to learn.

Medical training should incorporate these topics early and routinely, possibly through standardized patient encounters, case scenarios, and shadowing more experienced physicians dealing with these situations. In an educational system with so much to learn in so little time, adding more formal instruction will not be easy, but it is critical.

Understanding the science and getting the treatment right is crucial, but that’s only part of the equation. We as physicians must also remember the humanity of every patient and loved one. We need to be better equipped to serve as supportive, empathetic, and honest advisors to patients. Even when the discussions are challenging, decisions must be made by optimizing the doctor-patient relationship.

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About Nainika Nanda

Dr. Nanda recently graduated from West Virginia University School of Medicine. Experiences throughout her medical school training inspired her to pursue a specialty with vast opportunities in research and patient care related to both benign and malignant tumor biology. Currently, she is a resident physician at University of Wisconsin-Madison in the specialty of Otolaryngology-Head and Neck Surgery, commonly known as ENT.

Note: The views and opinions expressed in any guest post featured on our site are those of the guest author(s) and do not necessarily reflect the opinions and views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

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Patient Assistance Programs: Do They Help or Hurt?

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Rishi Sachdev, Patient Assistance Programs: Do They Help or Hurt?

Rishi Sachdev
Duke University

Yousuf Zafar, Patient Assistance Programs: Do They Help or Hurt? Yousuf Zafar, MD
Associate Professor of Medicine and Public Policy,
Duke Cancer Institute

Guest Post By Rishi Sachdev and Yousuf Zafar, MD
Duke University

New cancer drugs have improved prognoses for patients, but that improvement in effectiveness has come at a steep cost. The price tag of new anticancer drugs has been increasing at a significant pace, with the latest—Kymriah by Novartis—priced at $475,000 per treatment. These ever-increasing costs result in higher out-of-pocket costs for patients, which have been shown to worsen outcomes. Even with the existence of mandatory annual out-of-pocket maximums on insurance plans, financial burden experienced during the course of treatment can result in patients altering their behavior, and being non-adherent to treatment. This patient-level impact of the cost of cancer care has been referred to as financial toxicity.1

One way to avoid undue financial burden is through patient financial assistance programs that subsidize the cost of expensive medicines for patients. At first glance, forgiving a portion of the patient’s drug bill may seem like a reasonable solution—certainly, it helps some patients make ends meet while on treatment. But from a systemic perspective, patient financial assistance programs may be fraught with problems.2

First, it is vital to understand who funds most of these programs. In some cases, they are indeed run by charitable foundations. However, many foundations receive a large portion of their funds from the pharmaceutical industry.2 In practice, then, when patients seek financial assistance, pharma indirectly provides them with a discount toward their out-of-pocket expenses. A classic example of this phenomenon can be traced back to when Mylan raised the price of its EpiPen by $500 over 8 years.3 After experiencing public outrage, the company offered $300 subsidies to patients who used the product, which alleviated some burden, and offset the cost enough such that many patients still actively use the drug.4 However, the remaining cost to insurance was still high.5

Although the patient is not incurring the full brunt of the costs, we all ultimately pay through higher premiums as payers redistribute costs.
Accordingly, in such cases, pharmaceutical companies make substantial profits even after subsidizing patient costs. Payers may argue that financial assistance programs result in a disruption of market forces5 since the cost-sharing designs that these insurance companies create cease to matter. Despite copays or co-insurance, patients who have access to assistance programs are more likely to afford high-priced drugs. This results in insurance providers potentially pricing risk inaccurately in future cases, and creating sub-optimal insurance design.6 In other words, cost reduction today could raise costs tomorrow.

Second, not all patients are likely to take advantage of financial assistance, especially in cases where they have lower literacy, or less agency to produce documentation and application materials to qualify for subsidies. Not only does this result in an unequal distribution of assistance, but it may exacerbate financial harm, especially in cases where insurance companies lack the necessary price signals to construct plans to properly account for financial need.7

Third, patient financial assistance programs do nothing to actually lower the price of drugs. Perhaps the most significant issue our healthcare system must confront in the face of cost-sharing is that the drugs are still exorbitantly expensive. Although the patient is not incurring the full brunt of the costs, we all ultimately pay through higher premiums as payers redistribute costs. Policy change might be less likely if the target consumers of these drugs feel no direct need to voice their concerns, due to the elimination of their out-of-pocket costs.

Yet, from a clinical perspective, if the opportunity exists for oncologists to alleviate the financial burden experienced by their patients, they must take it. While patient assistance programs present a Band Aid solution to a bigger problem, patients today should not be denied the potential for lower medical bills.

But where do we look for a better solution? A first step is encouraging insurers to consider value-based insurance design, where cost-sharing is eliminated for high-value care.8 If the cost-sharing paradigm is shifted for high-value care, patients could be saved from financial and downstream physical harm. Second, patient assistance programs should be targeted towards poorer patients who are most in need, and, finally, we must continue to advocate for pharmaceutical companies to lower drug prices to a more sustainable level. These steps could greatly alleviate the burden experienced by cancer patients.

Citations

  1. Zafar SY, Peppercorn JM, Schrag D, et al: The financial toxicity of cancer treatment: a pilot study assessing out-of-pocket expenses and the insured cancer patient’s experience. Oncologist 18:381-90, 2013. https://theoncologist.alphamedpress.org/content/18/4/381.full
  2. Elgin B, Langreth R: How big pharma uses charity programs to cover for drug price hikes: A billion-dollar system in which charitable giving is profitable. Bloomberg, May 19,2016. https://www.bloomberg.com/news/articles/2016-05-19/the-real-reason-big-pharma-wants-to-help-pay-for-your-prescription
  3. Pollack A: Mylan to offer some patients aid on cost of EpiPens, New York Times, August 25, 2016. https://www.nytimes.com/2016/08/26/business/epipen-mylan-price.html
  4. Ubel PA, Bach PB: Copay assistance for expensive drugs: A helping hand that raises costs. Ann Intern Med 165:878-879, 2016. https://annals.org/aim/article-abstract/2565940/copay-assistance-expensive-drugs-helping-hand-raises-costs
  5. Ross JS, Kesselheim AS: Prescription-drug coupons–no such thing as a free lunch. N Engl J Med 369:1188-9, 2013. https://www.nejm.org/doi/full/10.1056/NEJMp1301993
  6. Pollack A. Coupons for patients, but higher bills for insurers, New York Times, January 1, 2011. https://www.nytimes.com/2011/01/02/business/02coupon.html
  7. Choudhry NK, Lee JL, Agnew-Blais J, et al: Drug company-sponsored patient assistance programs: A viable safety net? Health Aff (Millwood) 28: 827-834, 2009. https://www.healthaffairs.org/doi/full/10.1377/hlthaff.28.3.827
  8. Chernew ME, Rosen AB, Fendrick AM: Value-based insurance design. Health Aff (Millwood) 26:w195-w203, 2007. https://www.healthaffairs.org/doi/full/10.1377/hlthaff.26.2.w195

About the Authors

Rishi Sachdev is a Senior at Duke University majoring in Economics and minoring in Chemistry. He has worked under the direction of Dr. Yousuf Zafar to better understand the patient-level impact of the financial burden of cancer care in the US.

Yousuf Zafar, MD, is a gastrointestinal medical oncologist and healthcare delivery researcher. He is an Associate Professor of Medicine and Public Policy at the Duke Cancer Institute and Sanford School of Public Policy.

Note: The views and opinions expressed in any guest post featured on our site are those of the guest author(s) and do not necessarily reflect the opinions and views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

Betsy Glosik blog fb

Seeing the Bigger Picture of Survival Through Patient Advocacy

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Betsy Glosik HeadshotBy Betsy Glosik
Patient Advocate and Cancer Survivor
Co-Founder of Destination Hope

As patient advocates (as in most other things in life), it seems the more we learn, the more we see what we don’t know. Whether we’re involved in promoting a patient-centered approach to research, direct care, survivorship, policy change or education, there’s a daily twist and update for us to wrap our brains around. And no matter which arena we find ourselves in, we are always looking for the endpoint: How far have we come in cancer care, and how does this translate to measuring survivorship?

This past October, I was honored to participate as a patient voice in what is called a “Measure Incubator” held by the National Quality Forum in Washington D.C. The goal of these sessions is to develop ideas about best ways to assess care objectives and outcomes that are reliable and valid, and that fulfill the quality mandates for better and more affordable care—not only for cancer, but for other diseases as well.

A new concept for me, the goal of this particular panel was to develop a more accurate way to understand survival rates of melanoma patients (of which I am one), and to look at the most feasible, accurate, and encompassing way to gather data on overall survival rates for patients with this disease in the United States. Once the concept for measurement is developed, then it goes to the next steps to see if it can actually be implemented. Other panelists included dermatologists, surgeons, medical oncologists, research analysts, fellow NCCS Cancer Policy & Advocacy Team (CPAT) member Caitlin Riley, and Shelley Fuld Nasso, CEO of NCCS.

Surprisingly to me, there is no national standard of measure that accurately depicts survival rates over time with reference to staging. Panelists weighed in on quality of life and availability of information available for patients, current guidelines for treatment, updated definitions of staging (which were just published in the week prior to our meeting), and what information is realistically appropriate and available to pull from data banks (hospitals, EHR’s, statistics from Social Security, etc.). Existing databases do not hold all the answers. Some patients age out of the system after a period of time when released from treatment and are no longer followed. Some patients are not treated in a typical oncology setting so their statistics are not readily available. And there’s also the question of the providers’ lack of information on patient mortality, and if it even relates to their diagnosis.

Indeed, a complex set of information creates more questions. Clearly, we can never have the perfect picture. As with any photograph, there is a landscape outside the frame we cannot view. We can only imagine based on what we see. But the goal is to get the best optics we can to really understand what we are looking at so better decision-making to improve outcomes becomes reality. I certainly got an education on how challenging it is to see the whole picture in cancer care, and how intricately the pieces must fit together to achieve better outcomes.

About the Author

Betsy Glosik is a patient advocate, co-founder of Destination Hope in Cleveland, Ohio, a survivor of breast cancer and melanoma, and a member of the NCCS Cancer Policy & Advocacy Team (CPAT).

Learn more about CPAT and become a member »

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