Jennifer M. Gangloff

	After John Bartimole experienced early-stage esophageal cancer in 2006, he didn’t consider himself a cancer survivor. Both of his parents died from cancer. One sister was battling breast cancer and another sister was taking prophylactic medication because of her high risk of breast cancer. When he went to medical appointments, he saw other cancer patients struggling just to live. He figured his own good prognosis and minimal treatment with photodynamic therapy didn’t warrant the badge of survivorship.

	“I considered this not as serious,” says Bartimole, who now has only periodic endoscopies to monitor his condition. “These people went through hell and back. While I was very sick after treatment and had a few weeks of not being able to go into sunlight, it seemed like a walk in the park in comparison.”

	It’s not uncommon for people who’ve dealt with cancer to question their identity and how they fit into the community of cancer survivorship.

	“People have taken the word 'survivor' and debated it,” says Ellen Stovall, senior health policy adviser for the National Coalition for Cancer Survivorship (NCCS) and herself a survivor of Hodgkin lymphoma and breast cancer. “A lot of people are uncomfortable with the word.”

	It was one of the founders of NCCS, Fitzhugh Mullan, who first defined “survivor” in a 1985 article published in 

, bringing the concept into both medical and mainstream conversations. In essence, a person was considered a survivor from diagnosis to death.

	“The definition hasn’t changed through the years as much as the community has responded to the definition,” Stovall says. Not all cancer organizations have adopted the definition espoused by the NCCS, which also considers family and other loved ones of the patient as survivors.

[Facebook Discussion: How do you define "survivor?"]

	Melissa Collins of Royal Oak, Mich., also questioned her survivorship status after she received a diagnosis of early-stage melanoma at age 40, undergoing a wide-excision biopsy and lymph node removal in April 2011. Although the procedure left a 7-inch scar on her right leg, she required no chemotherapy or radiation and soon resumed her normal life. It was the emotional toll and feeling uncertain about her future that impacted Collins the most.

	But to both herself and others, she was far removed, at least on the surface, from the stereotypical image of a sick, weak and bald cancer patient.

[Read "Surviving 'Survivor' Stereotypes"]

	In fact, that stereotypical image of cancer patients as victims often gives way to strong, empowered cancer survivors. And with advancing knowledge and new treatment options available now, many people may not present the classic signs of someone going through cancer treatment. Some patients may choose to continue working. They may take a pill with minimal side effects instead of receiving toxic chemotherapy infusions, or have a cancer that needs only watchful waiting. But with this changing landscape, patients, such as Collins, sometimes wonder if they deserve to be called a survivor.

	Debbie Woodbury, a support volunteer at Cancer Hope Network, says it’s not uncommon. “Anyone who has heard the words, ‘You have cancer,’—you’re part of the club.”

	A survivor of non-invasive breast cancer, she struggled with the identity issue herself until she realized it wasn’t the amount of treatment that defined a cancer survivor, but the disease’s emotional impact.

 to help cancer survivors understand and discuss these emotional survivorship issues. It was on that community site where someone wrote that going to a support group felt like "going to a weight loss group with only five pounds to lose and having everyone look at you like you don't really understand the struggle, and that you really don't have a problem."

	“Some people don’t feel entitled to connect, relate or look for help,” Woodbury says. “I learned I had to talk to other survivors. It’s an emotional battle. I had to sit and tell my kids I had cancer, just like you.”

	Woodbury encourages patients who may feel undeserving of support to attend a support group or reach out to other patients and survivors and discuss how they are feeling. She says it helps to know they’re not alone with these emotions. How they identify themselves after a cancer diagnosis can also have important health implications, both psychologically and physically.

	It was a bitter exchange via social media with a fellow melanoma survivor who said that early-stage patients were not “real warriors” that helped Collins realize she deserved to consider herself a survivor. Other melanoma survivors, including those whose disease were in late stages, rallied to her defense, noting that they were all fighting a common enemy, for a common goal.

	“I can say it easier now: I’m a survivor,” Collins says. “Initially it was hard to say out loud, but I’m definitely a survivor.”

	For John Bartimole, it was an evolution in thinking that took years for him to consider himself worthy of the cancer survivor label. Years after his diagnosis, he admits he was fearful about his future and the self-realization that he had, indeed, undergone a life-altering medical crisis that requires him to be extra vigilant about his health and to change his diet and lifestyle.

	“I’m the eternal optimist, so maybe that’s why I didn’t initially consider it with the gravitas that I should have,” Bartimole says. “But the reality is that it was a major life occurrence for me, and I’m acutely aware now that I am a survivor.”

Additional reporting by Elizabeth Whittington.

Articles

With varying shades of survivorship, many patients who don't fit the stereotypical image wonder if they've deserved the title of cancer survivor.

Survivor Defined

As more patients with cancer embrace the convenience and control offered by oral anticancer therapies, they also face the daunting task of policing themselves when it comes to taking their medicine. Many aren’t doing a good job, which can lead to potentially harmful consequences.

“There’s been a seismic shift in the way we treat cancer over the last several years,” says Ellen Stovall, senior health policy advisor for the National Coalition for Cancer Survivorship. “And adherence has become a serious issue.”

There is no consensus in the healthcare industry on exactly how adherence to medication is defined. The term “compliance” has given way in recent years to “adherence,” a less judgmental term that refers to how consistently a patient takes a medication exactly as prescribed. In a 2003 report, the World Health Organization defined adherence to longterm therapy as “the extent to which a person’s behavior—taking medication, following a diet,and/or executing lifestyle changes, corresponds with agreed recommendations from a healthcare provider.”

Before the rise in oral anticancer therapy—any cancer medication in liquid, tablet or capsule form that is taken by mouth&mdash;cancer treatment was typically administered on-site at hospitals and clinics, where patients were closely monitored by doctors and nurses who could actually see patients receive their treatment, such as through intravenous (I.V.) infusion, and adherence was assured. Today, though, many cancer patients take their oral anticancer therapy at home, shifting the burden of adherence to patients and their families.

‘‘The thought was that cancer patients in general adhere better to their medication because of the implications of not doing so, but that’s not actually the case.’’

And, as it turns out, many patients are not doing that. Studies show that adherence rates for oral anticancer therapies are as low as 16 percent and as high as 100 percent, indicating we really don’t have a clear picture of the adherence issue. Cancer patients are like many other patients taking oral medications, especially for chronic conditions that often require long-term treatment, such as diabetes and high blood pressure, where nonadherence rates average about 50 percent. The challenge of nonadherence is expected to increase in coming years with the rise in chronic health conditions, increased long-term maintenance therapy for cancer and the growth in oral anticancer therapies—about 25 percent of cancer medications in development are oral formulations, with more than a dozen already on the market. Also, with more supportive medications for symptoms, bone health and other chronic conditions, the sheer number of pills a patient requires creates more chance of missing doses.

“The thought was that cancer patients in general adhere better to their medication because of the implications of not doing so, but that’s not actually the case,” says Robin Sommers, a nurse practitioner in the Center for Gastrointestinal Oncology at the Dana-Farber Cancer Institute in Boston. “Even when faced with lifethreatening disease, a patient’s adherence can fall short.”

The consequences of not adhering to medication exactly as prescribed are numerous and potentially harmful. It’s estimated that nonadherence across all health conditions causes 125,000 deaths annually in the U. S. and generates as much as $300 billion in healthcare costs. In cancer patients, poor adherence may be associated with disease progression and resistance to the medication. It also can lead to medical complications, more frequent doctor visits and more frequent and longer hospitalizations. Even some participants in clinical trials are nonadherent, which can lead to inaccurate information about medication safety and efficacy.

Nonadherence is typically traced to any of five interrelated factors: the healthcare system, socio-economic factors, patient behavior, treatment-related factors and disease-related factors. Some patients, for example, can’t afford their medication, so they don’t get refills. Others have trouble understanding the directions or have difficulty in swallowing pills.

Nonadherence doesn’t simply mean forgetting a dose; it occurs in many ways. Some patients may forget to take several doses because they’re traveling or they feel well and cancer is no longer at the forefront of every thought. Nonadherence also occurs when a patient doesn’t take the medication at the right time of day or with the appropriate foods. And, because serious side effects, such as frequent diarrhea, can affect how much of a medication the body absorbs, patients are considered nonadherent when they fail to report these side effects to their healthcare team. At the other end of the spectrum, some patients are nonadherent because they arbitrarily double up on doses, believing it will give them a cancerfighting advantage or because they worry that an oral formulation isn’t as effective.

Leibel Harelik of Austin, Texas, found out about the dangers of nonadherence. Harelik, 63, received a diagnosis of advanced prostate cancer in July 2002 and tried numerous treatments. He had been taking Zytiga (abiraterone acetate) for only a few months when he began experimenting with the dosing of the drug and his other medications in an attempt to reduce the side effects. “I was having such a hard time trying to adapt to the medication,” Harelik says. “So I’d drop a pill, and, instead of taking four a day, I’d take three. And I’d either not take my prednisone, or I’d take half a prednisone. I was trying to manipulate it.” Although he admits to experimenting with the drugs on his own, he says he told his doctors what he was doing.

The results were disastrous. Harelik wound up hospitalized with life-threatening health problems and later needed rehabilitation to regain strength. “It was a newer medication, and no one knew much about it,” he says. Harelik doesn’t blame his doctors for what happened. “They were doing their best to appease me and help me. I don’t think I would manipulate my medications any more. I learned my lesson the hard way.”

In some cases though, it’s doctors who aren’t following recommended prescribing guidelines. This so-called off-label prescribing practice leads to inadvertent nonadherence. This is a problem in treating chronic myeloid leukemia (CML), says Greg Stephens, executive director of the National CML Society in Birmingham, Ala.

“We hear about patients, even today, who are on unsupported dosing regimens, having been told to take their therapy drug every other day or to skip a day periodically,” he says. As a result, he continues, “They’re perhaps getting a suboptimal dose, and over time that has proven to be detrimental.”

Numerous methods to improve adherence have been tried. Alarm clocks, talking pill bottles, reminder phone calls and emails, diaries, online patient portals, even web chats—all have been tried with varying levels of success. And yes, there’s even an app for that.

Adherence problems so troubled healthcare workers at Rex Hematology Oncology Associates in Raleigh, N.C., that they developed an oral chemotherapy nurse position to specifically care for patients taking oral anticancer therapies. The program was prompted, in part, because patients were going to their cancer appointments so ill from unreported side effects and other adherence issues that they were sent directly to the hospital, says Mendy Moody, an oncology nurse who initially ran the program and now is manager of Rex Cancer Center of Wakefield in North Carolina. “The goal of the oral chemotherapy program is to help our patients remain safe while taking oral anticancer therapies, and at the same time intervening before the patient becomes so sick that an inpatient hospital admission is needed,” Moody says.

As part of the Rex program, all new patients starting an oral anticancer regimen are given an individual one-hour education session with an oral chemotherapy educator, during which they address potential barriers to adherence and find solutions to increase adherence, such as follow-up phone calls and mandatory appointments before prescription refills. “I think for the most part our patients feel a certain amount of security by doing this,” says Christy Rhodes, an oncology nurse and one of two oral chemotherapy educators at Rex. “We try to make it a good working relationship. I don’t want them hiding side effects from us. And I don’t think anyone has voiced an opinion that they feel overwatched.”

None of the methods to improve adherence have been fail-safe, though, and overall adherence rates to all types of oral medications have changed little in the past few decades. And some experts fear that the problem will only get worse with the growth in oral anticancer therapy and increase in chronic conditions.

“We don’t know what the solutions are,” Stovall says. “Everyone’s talking about the problems right now. But they don’t have a lot of ideas about how to solve the problem. There is no gold standard.”

The National Coalition for Cancer Survivorship is pushing for reforms that it says would improve medication adherence, including working with pharmaceutical companies to develop less toxic medications and oral drug parity in healthcare insurance that would cover costs for healthcare professionals to provide patient education.

I was having such a hard time trying to adapt to the medication. So I’d drop a pill, and, instead of taking four a day, I’d take three.

“We know we need payment reform, delivery reform and regulatory reform, but we don’t have the details on how all these would work,” Stovall says. “Our focus is to identify the policy issues by doing what we do best—bringing stakeholders together to identify causes of nonadherence, to consider policy solutions, and to have coalitions of advocates who are dedicated to implementing the policy issues. It’s irresponsible to put these oral medications out there and not educate patients about adherence.”

As oral chemotherapy becomes more widely used, adherence issues increase.

Troubling Trend: Medication Adherence

In many cases, oral anticancer therapies have changed the way cancer is treated. Here’s a look at oral anticancer therapy in three cancer types:

CML is sometimes called the poster child for oral chemotherapy. Prior to May 2001, treatment options of interferon and bone marrow transplantation were suboptimal, with low cure rates and high complication rates. But then a new era in oral anticancer therapy was ushered in when the Food and Drug Administration (FDA) approved Gleevec (imatinib), a type of tyrosine kinase inhibitor that blocks the protein made by the BCR-ABL oncogene. Similar medications have since been approved that can work when patients develop resistance to Gleevec. Some experts now consider CML a manageable chronic disease. While some patients have successfully stopped taking medication for CML without relapse, the disease generally requires long-term maintenance treatment with oral anticancer therapy, perhaps for a patient’s lifetime. Studies show that adherence decreases over time. Lack of adherence can lead to disease progression, development of medication resistance and, ultimately, risk of death.

Tamoxifen and aromatase inhibitors are the most common forms of hormone therapy for estrogenreceptor- positive breast cancer. They deprive tumors of the estrogen needed to grow by either blocking estrogen’s effects or blocking estrogen production. Hormone therapy can help prevent recurrences and stop or slow the growth of cancer that has spread. These medications are usually taken in pill form once or twice a day. The optimal length of treatment is still under investigation, but hormone therapy is usually taken for five years, and new research has shown a benefit when taken for 10 years. Tamoxifen, which has been in use for more than 30 years, is in a class of medications known as anti-estrogens or selective estrogen receptor modulators (SERMs). It blocks the effects of estrogen in the body. Aromatase inhibitors, including anastrozole, exemestane and letrozole, inhibit the enzyme aromatase, which is part of the estrogen-production process.

Several types of oral anticancer therapy are available to treat metastatic cancer. For example, Sutent (sunitinib), a tyrosine kinase inhibitor, is used to treat metastatic gastrointestinal stromal tumor, renal cell carcinoma and, most recently, pancreatic neuroendocrine tumors. In approving Sutent for this type of pancreatic tumor, the FDA noted that in a large study the drug extended median time until the cancer spread to just over 10 months, compared with around five months for placebo treatment. In 2011, the FDA approved Zytiga (abiraterone acetate) for treatment of advanced castration-resistant prostate cancer, after a phase 3 clinical trial showed that the median overall survival rate was 14.8 months among patients who received Zytiga and prednisone, and 10.9 months among those who received prednisone and placebo. Nexavar (sorafenib), in a class of medications called multikinase inhibitors, is used to treat advanced renal cell carcinoma and unresectable hepatocellular carcinoma. Like in other oral anticancer therapies, studies showed that it offered a small but significant survival advantage of at least several months.

Oral anticancer therapy is available to treat different types of cancer and metastatic disease.

The Right Medicine

Hildreth Stafford arrived at an unsettling juncture after treatment for breast cancer. She had endured a double mastectomy, radiation, aggressive chemotherapy, a hysterectomy and reconstructive surgery. She lost her hair, her eyebrows and her eyelashes, and her husband and young children were left reeling. When it was over, she felt like a different person. Once a hard-driving TV producer, she became fearful and stuck, unable to move forward.

“When I finished treatment, I knew my life was going to change dramatically,” recalls Stafford, 47, who received a diagnosis of stage 2 breast cancer in 2009. “I knew what I needed to do, but I just couldn’t do it. I decided I wanted a life coach to help me, and she completely changed my life.” 

Stafford interviewed several coaches by phone, and one of them directed her to Paula Holland De Long, a life coach, author and motivational speaker—and a fellow breast cancer survivor. For Stafford, that was just the connection she needed. After only two coaching sessions with De Long, Stafford felt equipped to act on her plan that alone she didn’t feel brave enough to carry out: In June 2010, she walked away from the successful television production company she co-owned. 

“Once I did it, I never looked back,” Stafford says. “It was so hard to walk away after more than 20 years in television, but Paula gave me the courage, the strength and the guidance to do it.”

Stafford is among a growing number of cancer patients turning to life and wellness coaches for guidance in a variety of areas—nutrition, exercise, work, relationships and stress management, for example. Coaches can help cancer patients across the continuum of care, from receiving a new diagnosis with complicated treatment options to end-of-life decision-making.

Although there may be some similarities, coaching is not the same as counseling or group therapy, says Mary Lou Galantino, PT, PhD, a certified wellness coach, clinician and physical therapy professor at the Richard Stockton College of New Jersey and an adjunct research scholar at the University of Pennsylvania, where she conducts research on integrative medicine and chronic diseases. Wellness coaching is generally intended to create positive behavior changes through S.M.A.R.T. (specific, measureable, attainable, relevant and time-bound) goals, in addition to providing a means of emotional support or exploration. It uses proactive and goal-oriented techniques and methods. Life coaching includes setting and achieving wellness goals, but also looks at “the bigger picture of a patient’s life,” Galantino says.

For Hildreth Stafford, the coaching she received from De Long was key to her emotional transformation. Especially important was their shared breast cancer experience.

“My friends and my husband were very supportive of me, but what I really needed was someone who had gone through what I had gone through,” Stafford says. “We had both been through hell and back, and I trusted her completely.”

Stafford, who lives in Georgia, did phone-based coaching with De Long, who lives in Florida. “It’s amazing that somebody I didn’t even know helped me change my life so much,” Stafford says.

“Her strength and support helped me walk away from my production company, and I don’t think I could have done it without her,” she continues. “Paula didn’t tell me what to do, but she made me realize that I could do what I needed to do and survive.”

I knew what I needed to do, but I just couldn’t do it. I decided I wanted a life coach to help me, and she completely changed my life.

While life coaching has been around for several decades, it has recently gained more prominence in the cancer community, thanks in part to the newer field of wellness coaching for survivors. This arose out of a growing awareness—especially among patients themselves&mdash;that treatment often didn’t focus on the whole person but rather on the disease.

Pam Schmid, a breast cancer survivor, knows firsthand how difficult the path is to optimal well-being after a cancer diagnosis. “The bumps in the road are numerous,” says Schmid, a health and fitness professional. “I knew what I needed to do to be healthy, but I had one setback after another, as a result of all the side effects of treatment. I knew if I was having trouble, others were, too.”

“People, in general, have trouble managing weight, exercising and eating healthy,” she says. “Add a cancer diagnosis to that, and you have even more of a challenge.”

Schmid established a wellness coaching program focused entirely on cancer survivors and, with the help of Galantino, performed some of the first research around that work. In their study, published in 

The International Journal of Interdisciplinary Social Sciences

 in December 2009, 20 breast cancer survivors, seven prostate cancer survivors and three colorectal cancer survivors participated in six sessions of wellness coaching over a three-month period. Participants showed various improvements, including decreased depression and anxiety, increased physical activity, better motivation and a healthier diet. 

Developing a trusting growth-promoting relationship, building confidence, fostering positive emotions and having a specific plan to facilitate change increases hope and feelings of well-being.

“A life coach is different than a wellness coach in that a life coach meets you wherever you are on your journey,” says De Long, an associate certified coach through the International Coach Federation and a certified professional co-active coach through The Coaches Training Institute. “Some patients may not be interested so much in wellness as in what’s next. Life coaching creates empowerment in whatever is going on in your life, and helps you to be proactive, to clear away angst and drama, and gives you the tools to make healthy choices.”

De Long knows what it’s like to face difficult choices after cancer. After her treatment, she left a high-profile executive position for a low-paying, mid-level job before she felt inspired to launch a coaching business to help other survivors.

“It took me three years to get my life back, and that was too long and too hard,” De Long says.

Other studies have indicated that coaches can help patients communicate better with their doctors about pain issues, among other healthy behavior changes. And these positive changes were sustained more than a year later.

“In our study, we actually reduced depression scores, which may have been a result of the process of coaching,” says Schmid, who, like Galantino, is also a certified wellness coach through Wellcoaches and the American College of Sports Medicine. “Developing a trusting growth-promoting relationship, building confidence, fostering positive emotions and having a specific plan to facilitate change increases hope and feelings of well-being.”

To assist patients, more hospitals, clinics and advocacy organizations are offering coaching services of various types. Coaching might involve matching a newly diagnosed patient with a long-term survivor who can provide information about treatment options, or it could entail interacting with a health professional who has extensive coaching training and certification and can help guide behavioral change. 

At Duke Integrative Medicine in Durham, N.C., for example, there’s a team approach to care that includes coaching, if desired. 

“In our program, a physician may be working with a massage therapist, an acupuncturist, a nutritionist, a stress management therapist and a health coach,” says Linda Smith, PA, director of professional and public programs at Duke Integrative Medicine’s Integrative Health Coach Professional Training program. “Essentially, the entire team works together with the patient to develop a health plan. 

“As a result, the patient walks away with a substantive health plan that addresses every aspect of health and well-being that they can then take into their real-life situations,” she adds.

Cancer survivors turn to wellness coaches for guidance.

Jennifer M. Gangloff

Survivor Defined

Troubling Trend: Medication Adherence

The Right Medicine

Do You Need a Cancer Coach?

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