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.

Do You Need a Cancer Coach?

The proliferation of coaching services for cancer survivors underscores a need for vigilance. Not all coaches are trained or certified. Some have no professional or medical expertise. In fact, there are no national standards or certification programs for people who bill themselves specifically as cancer coaches, says Mary Lou Galantino, PT, PhD, a certified wellness coach. “It is important to determine specific training and background information before embarking on a coaching journey.”

On the other hand, there are national and international certification programs for certain types of coaches, including life and wellness coaches. But that doesn’t mean everyone who runs an independent coaching business is certified, Galantino cautions. “Certification is essential to ensure the use of sound principles of coaching and not overstepping boundaries of medical practice.”

Certified wellness coaches must have a professional healthcare background and typically draw from evidence-based methodologies to guide cancer survivors toward actionable outcomes. They may refer patients to a professional counselor if they think it would help them achieve their wellness goals. Certified life coaches tend to look at the patient’s whole life experience, which includes wellness, but might also touch on major life decisions.

Understand that coaching goes by many names, but most coaching is intended to help with positive outcomes for behavioral changes.

Coaches may be affiliated with medical practices or they may operate independently. They may be doctors, nurses, nutritionists, psychologists or any other health professional—or simply someone who decides to become a coach and open a practice, with no formal training or experience. Coaching can be done in person, over the phone or even by email. Be leery of coaches who recommend certain treatments or push alternative treatments or supplements. 

If possible, get a referral for a coach through a hospital, clinic or reputable cancer organization. Be sure to interview potential coaches before hiring one. Consider professional background and training, certifications and affiliations, coaching philosophy and methodology, services offered, length of time in business, fees and client references.

Wellness coach Paula Holland De Long says coaching is not covered by insurance and can range from $75 to $250 per one-hour session. She adds that many coaches offer a variety of services in different price ranges, such as webinars and teleconferences.

If possible, get a referral for a coach through a hospital, clinic or reputable cancer organization. Be sure to interview potential coaches before hiring one.

Interview and research a potential cancer coach before hiring.

Searching for a Cancer Coach?

Eukaryotic one-celled or multicellular plant-like organisms that lack true stems, roots and leaves. They range in size from microscopic to macroscopic. They produce their own food through photosynthesis. 

Collective term for microorganisms with one cell and no nucleus. Bacteria reproduce through subdivision and are classified according to their shape, structure and behavior.

Though they may look like rocks or plants, coral are simple marine animals with a skeleton of calcium carbonate. They typically form colonies and may build reefs.

A group of eukaryotic organisms that lack chlorophyll and so must obtain nutrients from dead or living organic matter. They include molds, mildews, yeasts and mushrooms.

A living organism that can be seen only through a microscope. Microorganisms include bacteria, fungi, protozoa and algae. Although viruses are not considered living organisms, they are sometimes classified as microorganisms.

Simple organisms that range in size from microscopic to macroscopic (visible to the naked eye). They are single-celled eukaryote organisms, larger and more complex than bacteria. They include amoebas and paramecia.

One of the simplest of animal organisms, containing multiple cells but lacking any muscles, nerves or organs. They feed by pumping water through their matrix to filter out food particles. After being torn apart into individual cells, they can spontaneously reconstruct themselves.

A group of invertebrate marine animals, known technically as tunicates. These vase-shaped sacs of tissue spend most of their life attached to rocks, docks or the undersides of boats. They’re called squirts because of the way they squirt out seawater while feeding on plankton and organic material.

Glossary of terms for natural products used for drug development

Glossary

Fatigue can be demoralizing and frustrating for cancer patients, many of whom  consider the side effect more distressing than even pain or nausea, since those  are more easily managed by medications. Although fatigue is nearly universal  among cancer patients, it remains largely undertreated and under-researched.  

Little is known about the cause and mechanisms of fatigue, but studies  suggest it may be related to the cancer itself, treatment side effects, or  comorbid illnesses. One area of research expected to gain more interest is the  role of diet and nutrition in managing cancer-related fatigue.

“There is still a major gap in research in this area,” notes cancer  researcher Barbara F. Piper, DNSc, RN, professor and chair of nursing research  at the University of Arizona College of Nursing in Tucson. “And in lieu of the  evidence, the best guidelines we have are the guidelines that are available for  nutrition in healthy people,” says Piper, who served on the National  Comprehensive Cancer Network panel that issued updated guidelines on  cancer-related fatigue in March.

In the meantime, that leaves dietitians like David Grotto, RD, LDN, to tailor  nutritional plans to individual patients based on a comprehensive assessment of  their needs and health status. “Most patients don’t have years to wait for good  clinical trials in this field,” says Grotto, president of Nutrition Housecall,  LLC, a Chicago-area company whose services include in-home nutrition  consultations for cancer patients. “I literally have patients who are too  fatigued to eat.”

Patients should discuss fatigue symptoms with their doctor, and if  appropriate, consult with a registered dietitian. A detailed assessment can  determine if a patient is getting the proper amount and types of nutrients and  fluids. Grotto says adequate nutrition can be especially difficult for patients  experiencing appetite and taste changes. A dietitian can suggest palatable  substitutes that meet an individual’s target for calories, carbohydrates,  proteins, and healthy fats.

Complex carbohydrates, such as fruits, vegetables, and whole grains, offer a  good source of long-lasting energy, Grotto says. Simple carbohydrates, such as  sugar, provide a brief surge of energy followed quickly by a return of fatigue,  and should therefore be limited.

Protein, a key ingredient in managing cancer fatigue, builds and repairs  damaged body tissue. If cancer uses the body as a fuel source, some patients may  lack protein reserves in their muscles, which can leave them short of energy.  “Their bodies may really be crying out for additional sources of protein,”  Grotto says. Good sources of protein include fish, lean meat, eggs, soy, and  beans.

Nutrient-rich snacks—hard-boiled eggs, peanut butter on toast, or soups&mdash;come  in handy when a patient is too tired to whip up a full meal. Five or six smaller  meals throughout the day as opposed to the traditional three-meal-a-day schedule  may be helpful for patients with nausea and vomiting.

Many patients find it useful to keep a food diary, says Dee Sandquist, MS,  RD, director of nutrition, diabetes, weight management and wound healing at  Southwest Washington Medical Center in Vancouver, Washington. “That way, we can  work together to identify the food groups they may not be eating enough of or  perhaps too much of,” she says.

Patients should resist the urge to use vitamins or dietary supplements to  make up for what’s lacking in their diet without consulting their doctor,  cautions Sandquist. Some supplements can interact with medications or have  harmful side effects.

While patients and physicians await solid evidence that diet may improve  cancer-related fatigue, what has been proven to boost energy is exercise, such  as moderate walking, biking, and swimming.

Fatigue-Fighting Foods

Emerson spent his last few months getting his financial affairs in order, saying goodbye to friends, soaking up as much from life as he could—and spending precious time with his new wife, Brenda, whom he married in August 2006.

“When I first found out that I had HCC, it stunned me,” Emerson told 

 prior to his death on February 8 at age 59. Emerson was among the small number of HCC patients whose histories don’t fit into any of the major risk factor categories, which include the viruses hepatitis B and C and alcohol abuse.

Although researchers have made huge strides in cancer treatment in the past few decades, liver cancer remains largely untamed, resisting standard treatments. A recent highlight came in the form of a targeted agent called Nexavar® (sorafenib), which may soon become the first drug approved for advanced liver cancer after a phase III study found the drug extended survival.

Although doctors may have found a drug that lengthens patients’ lives, HCC, sometimes called hepatoma, remains a highly aggressive cancer. HCC is a type of primary liver cancer that starts in the liver, in contrast to secondary, or metastatic, liver cancer that starts elsewhere in the body and spreads to the liver. Liver tumors, nourished with a rich supply of blood via the hepatic artery and their own blood vessels, can double in size in just three to six months and spread quickly to other organs.

While liver cancer is common on a global scale—close to 700,000 cases worldwide&mdash;it remains somewhat rare in the United States with about 18,000 Americans diagnosed in 2006. But the incidence has been rising over the past two decades and is expected to continue to increase for at least a couple more decades. The growing incidence has led researchers to take a closer look at the origins of this deadly disease. 

The nature of the liver itself, at once both hardy and delicate, contributes to the difficulty of treating HCC. The two-lobed liver—about the size of a football&mdash;sits in the upper right quadrant of the abdomen, tucked under the ribs. The liver performs several vital functions, such as processing cholesterol, making bile (critical for digestion and fat absorption), helping the blood clot and detoxifying potentially poisonous chemicals, including alcohol and drugs.

Liver cancer experts attribute the rise in HCC to an increase decades ago in chronic infection with hepatitis C and hepatitis B, the most common risk factors along with chronic alcohol consumption. Infection with HCV peaked in the United States about 20 to 30 years ago, when blood transfusions weren’t screened for disease and sharing of infected needles was common among drug users, says Ghassan Abou-Alfa, MD, a medical oncologist with the Gastrointestinal Oncology Service at Memorial Sloan-Kettering Cancer Center in New York.

With about 170 million people worldwide infected with the more serious HCV, Americans make up close to four million, and another 1.4 million people in the United States and up to 400 million worldwide have HBV. But those infection rates are now declining, which may eventually drive down liver cancer rates. Dr. Abou-Alfa quickly cautions, however, that the decline may not be the end of the story.

Growing evidence suggests two other diseases now increasingly common in the United States may also be significant risk factors for primary liver cancer—obesity and diabetes. Precisely how they contribute to HCC is still under investigation, but both are known to cause nonalcoholic fatty liver disease, or liver cirrhosis, which Dr. Abou-Alfa and other experts believe will cause liver cancer incidence to continue to increase in years to come.

Liver cancer expert Hashem El-Serag, MD, associate professor of medicine at Baylor College of Medicine in Houston, is studying possible genetic determinants of cancer related to obesity and insulin resistance. “The association between obesity and hepatocellular carcinoma is gaining intense interest due to the epidemic rates of obesity in the U.S. and several other Western countries,” he says.

While evidence indicates a higher risk of liver cancer among those who are obese, the possible interplay of diet, diabetes, fat distribution in the body and other factors must be clarified, he says. If the HCC association bears out, Dr. El-Serag warns “it may have serious implications.”

Other risk factors for primary liver cancer include hemochromatosis, a hereditary liver disease, and aflatoxins, a carcinogenic fungus found in improperly stored nuts and grains, which is screened for and banned in the United States but common in Southeast Asia and parts of Africa.

The common thread among these risk factors is cirrhosis, which can develop silently over decades. Cirrhosis, or permanent scarring of the liver, results from diseases that injure and kill normal liver cells repeatedly over a long period of time. But the pathway isn’t clear for the 5 percent of people with cirrhosis that leads to liver cancer.

Researchers believe chronic infection with HCV leads to liver injury, inflammation and increased cell turnover, which, in turn, can cause cellular transformations resulting in malignancies. In addition, the genetic material of the hepatitis B virus can insert itself into normal liver cells, causing mutations and excessive cell growth that can lead to cancer. Liver cancer cells often develop numerous genetic defects or mutations as they grow, which is one of the reasons liver cancer is so hard to treat—the target is constantly shifting, and what works for one person may not work for another.

HCC typically has no symptoms until later stages, which makes early diagnosis difficult, especially in people who don’t know they’re at risk, like John Emerson. When signs and symptoms do arise, they may include weight loss, fatigue, pain in the upper right abdomen that may extend to the back and shoulder, feeling full after small meals, accumulation of fluid in the abdomen (ascites), nausea, loss of appetite and jaundice.

No “standard” chemotherapy exists for HCC since studies have shown chemotherapy offers little, if any, survival benefit while posing a high risk of side effects. One reason for chemotherapy’s ineffectiveness is the cancer-causing cirrhosis, which impacts the liver’s ability to metabolize cancer drugs, rendering them ineffective.

The commonly used chemotherapy drug Adriamycin® (doxorubicin) may be more helpful than other medications with a response rate of 11 percent. But combining Adriamycin with cisplatin, interferon and 5-fluorouracil, a combination known as PIAF, has shown a response rate of up to 26 percent with an average survival of about nine months.

Experts say chemotherapy can be used to shrink tumors prior to surgical resection, which can delay disease progression and make patients more comfortable by lessening pain and other symptoms. Although the liver can regenerate, resection (surgically removing the diseased portion of the liver) is an option for only about 10 to 15 percent of patients because cirrhosis affects the entire liver, decreasing its overall reserve capacity. At the same time, the liver is vulnerable to severe damage from chronic cirrhosis, and when operated upon, is prone to tearing and heavy bleeding.

The fact that liver transplant has become a real option in the past several years is without question the most exciting and promising thing that has happened for liver cancer patients. 

Patients without the option of surgical resection or liver transplant can look to other treatments that may extend life or relieve pain. These include ablation procedures that destroy tumor cells by subjecting them to temperature changes or chemical injections. Radiofrequency ablation, or RFA, uses heat to destroy tumors and is most successful when there are fewer than four tumors that are less than 4 centimeters. RFA, which may also be used as a bridge to prepare patients for liver transplant, has a three-year survival rate of up to 85 percent.

Another type of treatment, known as chemoembolization, involves injecting a chemotherapy drug into the hepatic artery, which feeds the tumor with life-sustaining blood, and then tiny particles are used to plug the artery and block blood flow. Chemoembolization has shown only a modest improvement in survival even in patients with the best outlook because the tumor eventually regains its blood supply.

Improvements in liver transplant offer a bright spot in HCC, say doctors, and more patients may soon become eligible for the procedure.

“The fact that liver transplant has become a real option in the past several years is without question the most exciting and promising thing that has happened for liver cancer patients,” says Goran B. Klintmalm, MD, PhD, chief and chairman of the Baylor Regional Transplant Institute at Baylor University Medical Center in Dallas. “In the past, once a patient had a large liver cancer that couldn’t be removed by surgery, the chance for long-term survival was very poor. But the five-year survival now is 60 percent, versus the 10 percent it used to be.”

At five years, the survival rate for transplant patients is now 60 percent and the risk of recurrence is low at 10 to 20 percent. But two major obstacles prevent broad use of transplant: a lack of suitable donor organs, and few patients are eligible for a transplant because of advanced cancer or the presence of additional comorbidities that don’t involve the liver.

Liver transplant criteria stipulate that ideal candidates either have a single tumor less than 5 centimeters or up to three tumors 3 centimeters or less each in diameter. In recent years, transplant criteria have been the subject of controversy, with some researchers suggesting the criteria be expanded to allow more liver cancer patients to receive transplants while still retaining high success rates. Other experts, however, believe donor livers must be reserved strictly for patients most likely to survive long term.

Many groups set an eligibility cutoff at a projected 50 percent survival at five years. But with liver transplant survival at five years now hovering above that, some experts believe the criteria can be loosened while still maintaining good survival projections.

“There’s active discussion about these criteria now, and it’s possible we may see a new proposal come out in the spring and perhaps have new criteria implemented in the summer,” says Dr. Klintmalm.

Even if the criteria are broadened to include larger or more than three tumors, doctors say the additional group of patients who become eligible is likely to remain small. It’s also possible to develop a recurrence of hepatitis infections, which could then ultimately damage the new liver.

Researchers are studying new ways to make more patients eligible for transplant. Dr. Klintmalm and his colleagues are testing a procedure called TheraSphere®, in which tiny glass particles are “loaded up” with radiation and injected into the liver. These particles lodge into the tumor and heavily irradiate it. “We are quite enthusiastic about this,” Dr. Klintmalm says. “We do this prior to transplant in hopes of reducing the cancer, making it less aggressive and less likely to come back after transplant.”

Bayer and Onyx Pharmaceuticals, makers of Nexavar, are taking steps to file the drug for approval in HCC. A phase III trial testing the effectiveness of Nexavar as a single agent was stopped in February to allow all patients to receive the drug after it was shown to significantly extend survival in patients with advanced HCC. Results of the SHARP trial will be released at the annual meeting of the American Society of Clinical Oncology in early June.

The Food and Drug Administration approved Nexavar, a multikinase inhibitor, in December 2005 for a common type of kidney cancer. The targeted agent works by halting the uncontrolled growth of cancer cells and disrupting the blood supply that feeds the tumor. Results from a phase II study conducted by Dr. Abou-Alfa and colleagues found Nexavar stabilized HCC for a third of the 137 patients in the trial, and 11 patients had some tumor shrinkage. The research, which was published in the Journal of Clinical Oncology in September 2006, also uncovered 18 genes that may help doctors predict who would benefit most from Nexavar.

Scientists hope combining Nexavar with chemotherapy will boost efficacy, so a phase II trial is now under way testing Nexavar in combination with Adriamycin.

Avastin® (bevacizumab) is another targeted agent showing moderate benefit in this difficult-to-treat cancer in various combinations with chemotherapy, including Gemzar® (gemcitabine) and Eloxatin® (oxaliplatin). The three-drug regimen resulted in close to half of trial participants having either stable disease or some tumor shrinkage.

Data from a phase II study of Tarceva® (erlotinib), a targeted agent already approved for lung and pancreatic cancer, showed the drug extended median overall survival to more than a year. Unfortunately, none of these new drugs appear to be a homerun for HCC, and researchers continue to examine various targeted agents and drug combinations.

“Liver cancer is a difficult disease,” Dr. Abou-Alfa says. “But we have opportunities both in understanding the biology of it and how molecules talk to each other and make the cancer spread. I think this is considered a hopeful step, and there has been a great effort by many people all over the world.

“But unfortunately, this is not a very well-recognized serious disease, despite the silent epidemic of hepatitis C, and the numbers could be very scary. We need to see more funding and more public interest in liver cancer.”

That’s something John Emerson wanted to see. “I had zillions of things I wanted to do with my friends and places I wanted to go,” Emerson said. “I would just tell other people to do the things they’ve wanted to do and to find resources to help deal with grief and depression. You can get past that and make whatever time you have left quality time.”

Last summer, he went rock climbing at White Horse Ledge, an 800-foot granite slab in the White Mountains of New Hampshire. “I only got half-way up and then I ran out of steam, but I tried it,” he said. Up until his death, he continued to kayak the rapids of the Farmington River in Massachusetts when he felt able, and he got in a little cross country skiing this winter, even if it was just a few feet in his own backyard.

Editor’s note: John Emerson passed away at his home in Limington, Maine, on February 8, 2007. CURE is proud to honor his memory.

John Emerson was an avid, healthy kayaker and outdoorsman when he learned he had hepatocellular carcinoma (HCC), or primary liver cancer, in May 2006. Six weeks after his diagnosis, Emerson was scheduled to have a resection to remove the diseased portion of his liver, but there wasn’t enough healthy liver. Other therapies were attempted, including a clinical trial with a new targeted cancer drug, but his tumor continued to grow through the fall.

The incidence of the most common type of liver cancer, known as hepatocellular  carcinoma, has been on the rise in recent decades&mdash;and researchers know why.  

Liver Cancer: More Cases, More Causes

Although Hepatitis B and C are the main offenders when it comes to hepatocellular carcinoma, there are actually a total of five viruses, labeled A through E.

Hepatitis A is an acute condition, so most people get better on their own within a few weeks without any long-term ill effects. Found in feces of infected people, transmission typically occurs through consumption of contaminated food or water. A vaccine is the best protection against hepatitis A and is recommended for people traveling in underdeveloped countries. The hepatitis E virus is spread in much the same way as hepatitis A. It’s rare in the United States, and infected people generally get better over time.

Hepatitis D can occur simultaneously with hepatitis B, known as a co-infection, or as a so-called superinfection in people already infected with chronic HBV, which can lead to cirrhosis.

Studies estimate 15 percent of HCC diagnoses in the United States are the result of HBV, 47 percent result from HCV, 5 percent result from co-infection of both viruses and the remaining 33 percent of HCC cases have non-viral causes.

A hepatitis B vaccine has been available since 1982, and infants and children in the United States are routinely vaccinated. The 1.4 million Americans with chronic HBV need lifelong monitoring and screening. Many patients are healthy carriers of HBV, and although they don’t have liver damage, they can transmit the virus to others through exchange of blood or bodily fluids during unprotected sex, sharing of drug needles or during birth, when an infected mother transmits the virus to her newborn.

Several antiviral drugs are available to treat chronic HBV, including interferon alfa, adefovir dipivoxil and lamivudine. The various subtypes of HBV can develop drug-resistant mutations, but in most cases, the immune system can mount a strong enough attack to rid the body of HBV. Rarely—1 to 5 percent of the time&mdash;HBV can lead to cancer.

Things are trickier with HCV. No vaccine currently exists to protect against the virus, which wasn’t discovered until 1989. HCV is transmitted through the same methods as HBV, though HCV is rarely passed from mother to newborn. Countless people who received blood transfusions before the early 1990s—when HCV screening of blood products began&mdash;may have been unknowingly infected.

While HBV is more common worldwide than HCV—up to 400 million versus 170 million&mdash;HCV dominates hepatitis cases in the United States, with an estimated four million Americans infected with HCV. For most, the virus becomes chronic, and of those, 10 to 25 percent will develop HCC. HCV-caused liver cancer can develop more quickly than cancer caused by HBV, taking two to three decades as opposed to two to seven decades&mdash;often with no symptoms of infection. When symptoms of HCV do occur, they may include jaundice, fatigue, dark urine, abdominal pain, nausea and loss of appetite. People with chronic HCV increase their risk of cirrhosis and liver cancer if they excessively consume alcohol or are overweight.

Treating HCV has been challenging because the virus mutates frequently, developing variations that resist both the immune system and antiviral medications. The current standard treatment is a combination of pegylated interferon (Pegasys® [peginterferon alfa-2a] or PEG-Intron® [peginterferon alfa-2b]) and ribavarin. For many people, treatment isn’t effective, and even when it is, there’s a high rate of relapse once treatment stops.

Researchers are developing new treatments, some of which are in phase III testing, that they hope will be more effective. Particularly promising is a protease inhibitor in phase II trials called telaprevir (VX-950) that inhibits an enzyme the virus needs to replicate and survive.

A short explanation of the five types of Hepatitis viruses and their relation to hepatocellular carcinomas. 

Dangerous Exposure

Kim Rider had a serious competitive streak. Well, not just a streak. It was in  her very nature. She was a competitive mountain bike racer, a competitive  barefoot water skier and a competitive cross-country skier.

All that came to a screeching halt, though, when the 48-year-old was  diagnosed with breast cancer in May 2005 and underwent a lumpectomy and  radiation before starting a five-year course of tamoxifen therapy. But once she  completed radiation in September 2005, that familiar competitive fire relit.  Rider refused to surrender her active lifestyle to breast cancer. “I had high  expectations for myself,” she recalls.

High indeed. Rider decided to scale California’s 14,162-foot Mt. Shasta with  the Breast Cancer Fund, a nonprofit based in San Francisco. “Mountain climbing  was something I always wanted to do and thought I would do, but never had time  to do,” says Rider. She spent the months following treatment training for the  climb. The effort paid off, and in July 2006, Rider summited Mt. Shasta. “It was  such a magical experience,” she says. “I felt like I floated to the top, and it  really gave me a sense of confidence and helped me reclaim myself.”

Whether survivors scale a mountain, reconnect with a favorite pastime or  shrug off stereotypes, there’s no denying that facing down cancer triggers a  need to find meaning and confront challenges. For Rider, she’s already making  plans to climb Mt. Shasta with the Breast Cancer Fund in 2007 in addition to a  ski mountaineering trip in Canada in February. She’s even toying with the idea  of getting back into competitive water skiing and mountain biking.

Rider concedes she has struggled with comparing herself to who she was and  what she could do before breast cancer. But now she’s filled with intensity. “I  want my life to be purposeful and rich. My family doesn’t always understand my  passion for extreme things but they know it nurtures and fulfills me. I don’t  want to just talk about something or dream about it. I want to do it.”

During one of her several rounds of treatment for chronic lymphocytic leukemia  (CLL) that was first diagnosed in 1980, Arlene Pannullo kept getting pneumonia  and was frequently hospitalized. At one point, doctors thought things looked so  grim that she might have lymphoma. “All I could think was, ‘Damn it, I never  went to Greece,’” recalls Pannullo, who owns an antiques business in Clifton,  New Jersey.

As it turned out, Pannullo didn’t have lymphoma. But the incident helped her  realize that she didn’t want to be faced with regrets. So when she finished her  latest round of treatment for CLL in April 2006, her thoughts turned to an  activity she’d once enjoyed on occasion but gave up completely when she was  diagnosed nearly three decades ago—horseback riding. She was hesitant at first  and questioned if she was up to it. “I called a trainer and told her, ‘I’m 66  years old, I just finished chemo and two years of restricted activity, and I’ve  always wanted to do this,’ ” Pannullo recalls, “and she welcomed me into an  adult riding group.”

Today, Pannullo takes private riding lessons three days a week, learning the  fine points of the four gaits—walking, trotting, cantering and galloping&mdash;and how  to tack a horse, or put on the saddle and bridle. Pannullo now hopes to compete  in dressage, a series of difficult, orchestrated movements that’s been likened  to horse ballet. And she’s looking for a horse of her own, preferably a rescued  thoroughbred that couldn’t make it on the racetrack.

“When I’m riding, I feel as if my endorphins are working,” she says. “I don’t  take my body for granted anymore. I was afraid that if I didn’t do this now, I  would never do it, and I don’t like the word never. I’m doing what I want to be  doing, and I’m very lucky that I’m able to.”

And what about that trip to Greece? “It’s on my agenda,” Pannullo says.  “Probably in the spring or next summer.”

Jan O’Daniell had been worried. She thought a prophylactic bilateral mastectomy  would mean doom for the cardinal tattoo gracing the upper portion of her left  breast. But there was good news: “I am going to get to save the cardinal,” she  says.

This cardinal is no ordinary tattoo, even it if looks like a rather ordinary  drawing of a rather ordinary red bird, nevermind its chosen perch. No, this  cardinal is highly symbolic for O’Daniell, who at age 46 has had Hodgkin’s  disease twice, breast cancer twice, partial removal of her parathyroid gland and  surgery for a benign acoustic neuroma that left her face partially paralyzed and  deaf in her left ear. It was in 2001, between the two breast cancers, that she  got the tattoo. “The cardinal represents God’s presence in my life,” says  O’Daniell, a former singles’ minister from LaPorte, Texas. “I really struggled  with God, wondering why he didn’t protect me. But to say that God has not gotten  me through all this would be a lie. It’s a very complex relationship I have with  God.”

The cardinal also represents freedom for O’Daniell, who faced opposition when she told her highly conservative family and friends that she intended to get a tattoo. Even her husband, Michael, was initially against the idea. “I had a lot of explaining to do,” she says. “I was breaking away from the concepts they had of what women were supposed to be.” But when she convinced her husband that getting a tattoo wasn’t about rebelling but about reclaiming some control over her body, he not only changed his mind, he came up with the design.

“I had [the tattoo] put low down because I thought it would be a very private thing for me, and I ended up showing it to everyone—then thought, ‘I could get arrested for this,’ ” O’Daniell jokes.

After she heals from her October 2006 bilateral mastectomy—a treatment choice she made to prevent future breast cancer recurrences&mdash;O’Daniell may add more tattoos to help cover the scars, perhaps a simple branch or perhaps an entire Tree of Life. But because of previous radiation to the area, she must proceed cautiously to protect her skin. It may take years to add all of that ink safely, but O’Daniell doesn’t mind. “I could not believe how liberated the cardinal made me feel. I wasn’t expecting it to make me feel so confident, so bold and so alive. Tattoos are a way of reclaiming my body."

Survivors experience urge for change in their lives. 