Katy Human

Louisiana oncologist Gerald Miletello has been treating patients with cancer for three decades and given many people the awful news that they have cancer. “The first question of nearly every patient is ‘What should I eat?’” Miletello says. “They all want to know how to eat.”

That issue, especially the subject of dietary fats, is not always an easy one for patients to navigate on their own. An option for people who have cancer is to engage in honest, early discussions about diet with health care providers, not only to help them feel better during treatment, but also so that they will worry less.

“There are all these huge debates right now about fats, saturated fats, unsaturated, polyunsaturated, monounsaturated,” says Cynthia Thomson, director of the University of Arizona’s Canyon Ranch Center for Prevention & Health Promotion. “It gets very confusing for the consumer, and some patients are afraid to eat anything.”

And that’s the last thing she or Miletello want. Patients undergoing chemotherapy, radiation or surgery need energy. Some treatments can cause nausea, vomiting or diarrhea, which can make it challenging for a patient to maintain energy or even a healthy body weight.

“When you start treatment is usually not the time to make a radical change in your diet,” Thomson says. “In some cases, we might talk about avoiding comfort eating, but in general, this is a time for moderation.”

Miletello and Thomson agree that a cancer diagnosis can be a wake-up call for people who need to change their diets in the long run. Obesity, which is sometimes associated with high levels of fat consumption, can increase the risk of developing certain cancers. And, both experts say, there is evidence that, overall, low-fat diets are better for people dealing with cancer. For some cancers, eating low-fat diets could lessen risk of recurrence. A study published in April 2013 in the 

 (JNCI) states that women who survived breast cancer and consumed low-fat dairy products, for example, had a lower risk of recurrence and mortality than those who consumed high-fat dairy, although the link to recurrence was not deemed statistically significant. The authors of another more recent study published in the 

 surmised that the effect was probably due partly to the relationship of fat and estrogenic hormones, known to play a role in many breast cancers; estrogen hormones are more prevalent in high-fat than in low-fat foods. However, there is an ongoing controversy as to whether the types and amount of fat, versus simple carbohydrates or sugars, are the real culprits for obesity in general and for related con- ditions such as coronary disease—so the same uncertainty could apply to cancer outcomes.

Another study followed men who had prostate cancer to see if higher consumption of fat was associated with poorer outcomes. The study found that saturated fat and the fatty acids α-linolenic acid (ALA) and eicosapentanoic acid (EPA) “were related to the risk of advanced or fatal prostate cancer but not to nonadvanced prostate cancer.”

“So for some patients, I might say, ‘OK, let’s talk about that high-fat latte with extra sugar,’” Miletello says. “‘Maybe cut the creamer by half, or use cinnamon instead for flavor.’”

Miletello has compiled food suggestions in 

Eating Well Through Cancer: Easy Recipes & Recommendations During & After Treatment

. Co-authored by Holly Clegg, the book combines quick, basic recipes with clear advice for people with cancer. For example, patients on chemotherapy may find that the fats in avocados or nuts cause less nausea than saturated fats, Miletello says.

“Not all cancers are alike, not all people are alike, not all treatments are alike,” Thomson says. “There’s a certain amount of tailoring every patient needs.”

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People with cancer are encouraged to engage in honest, early discussions about diet with healthcare providers, not only to help them feel better during treatment, but also so that they will worry less.

Chewing the Fat

New Class of Drug Debuts with Melanoma Treatment

	With the Sept. 4 approval of Keytruda (pembrolizumab) for advanced melanoma, the monoclonal antibody became the first treatment approved in a new drug class called PD-1 inhibitors. Keytruda blocks the PD-1 pathway, by which cancer cells can evade the immune system. The drug makes it possible for T cells to identify and attack melanoma tumors.

	After being granted breakthrough status last year and then priority review in May, the Food and Drug Administration (FDA) gave Keytruda (also known as MK-3457) accelerated approval in early September after the agency determined the drug’s safety and potential effectiveness filled an unmet need for patients. Previous early-phase studies found the drug to be very safe and effective in shrinking tumors for several months. Follow-up studies are being conducted to confirm whether there is a survival benefit.

	The drug is approved for patients with advanced or unresectable melanoma that no longer responds to other treatments, including Yervoy (ipilimumab). The approval marks the sixth new melanoma treatment since 2011.

	Keytruda is one of several treatments that boosts the immune system. Additional studies are testing various combinations of these drugs, and researchers are hoping that targeting different pathways may boost survival even more. Other PD-1 inhibitors, as well as those that block PD-L1, are being tested in a variety of cancers, including lung and kidney cancers. For more information, visit 

Avastin Approved for Use in Cervical Cancer

	On Aug. 14, the FDA approved Avastin (bevacizumab) for women with recurrent, persistent or metastatic cervical cancer. Avastin is the first biologic drug to be approved for advanced cervical cancer, a mere four months after it was accepted in the FDA’s priority review program.

	The approval was based on a study of 452 participants who were randomized to receive two different chemotherapy regimens with or without Avastin. The addition of Avastin improved overall survival from 12.9 months to 16.8 months, regardless of chemotherapy regimen. Researchers noted in their study results that patients with advanced cervical cancer usually do not have sustained responses to chemotherapy, the standard of care for this disease. Given the aggressive nature of advanced cervical cancer, an improvement of nearly four months is considered meaningful.

	Some trial participants treated with Avastin, a therapy that disrupts the blood supply to tumors, experienced hypertension, fatigue and decreased appetite. Rare but severe occurrences of gastrointestinal perforations and fistulas were reported with the treatment.

	On Aug. 11, the FDA approved Cologuard, an at-home colorectal cancer screening test, the first stool-based test to use a particular noninvasive method in detecting colorectal cancers and potentially cancerous polyps.

	The approval was based on a study of more than 10,000 individuals who were at average risk of colorectal cancer and between the ages of 50 and 85 years old. The participants used either Cologuard or another type of stool test called a fecal immunochemical test. Cologuard detected 92 percent of colorectal cancers and 42 percent of advanced large polyps, compared with 74 percent and 24 percent, respectively. However, Cologuard. a gene-based test, did have a higher number of false positives, incorrectly identifying people who were negative for cancer or large polyps called adenomas (87 percent versus 95 percent).

	While the test accurately detects potential cancer, individuals who have a positive result would need to undergo a colonoscopy to confirm the polyp or cancerous mass. For more information, visit 

	On July 23, the FDA approved Zydelig (idelalisib) to treat patients with relapsed forms of three blood cancers: chronic lymphocytic leukemia (CLL), follicular B-cell non-Hodgkin lymphoma and small lymphocytic lymphoma, another type of non- Hodgkin lymphoma. In trial, participants with CLL who were treated with Zydelig lived 10.7 months without disease progression compared with 5.5 months for those not taking the drug. Zydelig is the first approval of a P13 kinase inhibitor, and carries a warning to patients and doctors of fatal and serious side effects, including liver toxicity, diarrhea and colon inflammation, lung inflammation and intestinal perforation.

	On July 28, the FDA approved an expanded use of Imbruvica (ibrutinib) to treat patients with the 17p deletion form of chronic lymphocytic leukemia (CLL). Patients with CLL who carry the deletion in chromosome 17 generally respond poorly to standard treatment for CLL. The approval followed promising results from a clinical trial of 127 participants who had CLL with 17p deletion. Trial subjects were given Imbruvica or the standard therapy of Arzerra (ofatumumab). The trial was stopped early for effectiveness when it was determined that the group treated with Imbruvica experienced a significant reduction in the risk of disease progression or death.

	Imbruvica is already approved for use in the second-line treatment of mantle cell lymphoma and CLL. It blocks an enzyme that allows cancer cells to grow and divide.

	Because some healthy cells also use the enzyme, there are side effects, including low platelet counts (thrombocytopenia); a decline in white blood cells called neutrophils, which fight infection (neutropenia); diarrhea; anemia; and fatigue.

	Until recently, available treatments had limited success against peripheral T-cell lymphoma (PTCL), a diverse group of aggressive and rare cancers that attack lymph nodes. But on July 3, the FDA granted accelerated approval to Beleodaq (belinostat), because it filled an unmet need for patients with a serious condition.

	The approval was based on a clinical trial of 129 people whose cancers either did not respond to other treatment or came back after other treatment. In about a fourth of those participants, cancers shrank or disappeared entirely with Beleodaq. On average, treatment response continued for just longer than eight months, but endured nearly 30 months in some participants. Beleodaq is in a class of drugs called histone deacetylase inhibitors. Side effects included nausea, vomiting, fatigue, fever, anemia, thrombocytopenia, neutropenia and infection. For more information, visit 

The latest in cancer prevention, diagnosis and treatment.

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A patient skips a chemotherapy appointment because he cannot face feeling so terribly ill again; his care providers were unaware of his anxiety. A survivor exhibits symptoms of heart problems years after treatment ends, and neither she nor her new family doctor connect them to the lymphoma treatment she received more than a decade before.

There can be so much compartmentalization in cancer treatment and a lack of coordination among providers,” says Shelley Fuld Nasso, chief executive officer of the National Coalition for Cancer Survivorship (NCCS). “We believe it’s important to look at the whole experience of cancer—what patients are going through on an emotional level, what kinds of care survivors need.”

The NCCS and other organizations have advocated for clear standards of care that serve the needs of cancer patients and survivors. In response, the American College of Surgeons’ Commission on Cancer (CoC) announced in 2011 that it would add new, patient-centered requirements for cancer treatment facilities seeking CoC accreditation. Among the new rules: By 2015, cancer centers must provide clear, concise survivorship plans to every patient.

“With survivorship care plans, patients will leave with a comprehensive medical summary and a complete list of what to look for, what to be aware of,” says Nina Wendling, chief operating officer of the NCCS. “The care plan will outline when and which doctor they should see for surveillance and follow-up tests and provide information on long-term and late effects of both cancer and cancer treatment.”

This is something that has really been important to NCCS for a long time. While we hope for the cure, we focus on the care.

Also among the CoC’s requirements for 2015: accredited cancer programs must screen patients for symptoms of distress associated with facing what could be a long-term disease with serious costs, disruptions to family routines and new responsibilities. Such distress is common in cancer patients and survivors but is often not identified or treated.

The requirements seem likely to have a substantial impact: the CoC reports that about 70 percent of patients with newly diagnosed cancer in the U.S. receive treatment in oneof more than 1,500 CoC-accredited facilities. So, by 2015, these patients will leave their final oncology appointment with a document containing a brief history of their diagnosis and treatment, as well as a plan for their future health care. And fewer will go home with unrecognized depression and anxiety.

Many cancer programs are already taking action, Wendling says. She is working with some programs to integrate a survivorship care planning program called 

. In addition to the NCCS, collaborators on the project include experts from UCLA’s cancer survivorship center, the Oncology Nursing Society, WellPoint, Inc., and drugmaker Genentech.

The Journey Forward program provides free, downloadable software with tools and protocols that administrative support staff, social workers, oncology nurses and physicians can use to ensure that patients receive a survivorship care plan they can share with their other healthcare providers.

“This is something that has really been important to NCCS for a long time. While we hope for the cure, we focus on the care,” Fuld Nasso says.

By 2015, cancer centers must provide clear, concise survivorship plans to every patient.

New Requirements for Patients and Survivors Needs

In 2008, Marie Masters traveled to Memorial Sloan-Kettering Cancer Center in New York to seek a second opinion. A doctor had given her a diagnosis of lung cancer that a biopsy failed to confirm. But an imaging scan revealed a suspicious spot on her colon, which turned out to be malignant.

“I was so, so lucky,” says Masters, now 69 and living in White Plains, N.Y. “This could have grown on and on since I had no symptoms at all.”

Today, as far as can be determined, Masters is cancer-free. But she knows her risks, and she receives continuing guidance from the team at Sloan-Kettering on how to manage those risks and the stress that accompanies them.

“Cancer does have a tendency to come back,” she says. “Now I’m in a lung cancer prevention program and a colon cancer prevention program. I’ve been to workshops on how to meditate, how to eat right, how to exercise. These have been so beneficial to my health.”

Survivorship researchers and advocates are working to ensure that in the future, Masters’ experience will be routine.

Recently issued clinical treatment guidelines from the National Comprehensive Cancer Network (NCCN) make clear that care for cancer patients doesn’t end when treatment ends. Rather, healthcare providers are expected to help survivors understand long-term and late effects, including the risk of recurrence and second cancers. Follow-up treatment should include risk monitoring, discussion about healthy living practices and regular check-ins with survivors to ask them specifically about their anxiety level, pain, sleep patterns and ability to complete tasks requiring attention, among other issues.

Such issues can have a profound impact on survivors’ quality of life, says Debra Friedman, director of the survivorship program at the Vanderbilt-Ingram Cancer Center in Nashville, Tenn. Friedman served on the panel of experts that developed the NCCN survivorship guidelines.

She says survivors sometimes dismiss serious issues, because such challenges seem minor compared with surviving cancer itself. “They’ve been through a war and won that war,” Friedman says. Compared with what they’ve been through, fatigue, sexual dysfunction, an inability to get back to exercising and chemobrain seem like relatively minor issues that they’ll just have to live with, she adds.

If you had a toothache and you didn’t tell anyone about it, how would it resolve?

Survivors need to understand that since the guidelines are just that, they still need to advocate for better survivorship support, says Patricia Ganz, director of the UCL A-LIVESTRONG Survivorship Center of Excellence at the Jonsson Comprehensive Cancer Center in Los Angeles. And because not every doctor, nurse or cancer center will have the experience or ability to provide comprehensive survivorship care, patients must learn to ask for help when they need it. That might mean, for example, finding a survivorship care plan online, printing it out and bringing it to a doctor’s appointment for discussion—or arriving at appointments with prepared questions.

“If you had a toothache and you didn’t tell anyone about it, how would it resolve?” Ganz asks.

But they don’t need to. There are effective treatments for depression and anxiety, ways to deal with cognitive or attention challenges, and tools to assess the reasons for sleep problems or pain. And if treatment-related problems, such as bone loss, are caught early, there might be less long-term damage.

“We want to ensure that providers bring up important issues and give them evidence-based ways to assess and address them,” Friedman says. “I think these guidelines are an incredible start.”

The NCCN decided to take on the issue of survivorship two years ago, partly in recognition of a positive trend: More and more people survive cancer, says Joan McClure, senior vice president for clinical information and publications for the NCCN.

To develop the new guidelines, the NCCN engaged experts in oncology from throughout the country. During the course of a year, they split into working groups—one for pain, for example, another for sleep issues&mdash;and reviewed the scientific literature on how to assess survivors’ problems and intervene in a meaningful way. Focus areas included:

 > Immunizations and prevention of infections 

The guidelines were then developed to give oncologists, primary care doctors, nurses, social workers and other healthcare providers an easy-to-follow structure. At the first level, providers might consider asking a few simple questions.

To check for anxiety and depression, for example, the provider might ask:

> Do you often feel nervous or do you worry? 

> Have you lost interest in things you used to enjoy?

A “yes” answer would prompt the care provider to dig deeper, following with the more detailed assessments in the guidelines. Does the survivor mention irritability, fatigue and restlessness? Those symptoms might indicate general anxiety disorder, which has an array of treatment options. A pounding heart, dizziness and nausea might point toward a panic disorder.

We want to ensure that providers bring up important issues and give them evidence-based ways to assess and address them. I think these guidelines are an incredible start.

Friedman says the teams that developed the assessments and intervention documents brought their ideas from the conference room into the clinic and then back again during the yearlong process. “This was iterative. I’d bring ideas back, ask four or five people to tell me what worked and what didn’t,” Friedman says.

It’s difficult to predict how quickly the new guidelines will be adopted by cancer centers around the country and by insurance companies. Other NCCN guidelines are now widely used in clinical settings and insurance coverage decisions, McClure says. But the survivorship guidelines are different, requiring cancer centers to consider training and hiring people.

“It doesn’t have to take a lot of resources,” Ganz says. “It requires identifying people who are interested and motivated in providing this kind of care.” That means tapping into the interests of a sexual therapist willing to talk with survivors about sexual health, or a cardiologist who can get up to speed on the heart issues that some survivors might face from cardiotoxic chemotherapy.

Another incentive for adopting new survivorship guidelines came from the American College of Surgeons’ Commission on Cancer, which accredits more than 1,500 hospitals. The organization added implementing survivorship care plans to its requirement for receiving and maintaining accreditation, and hospitals have until next year to comply.

[New Requirements for Patients and Survivors Needs] 

Kara Noyes, a 30-year-old survivor of osteosarcoma who now attends the Seattle Cancer Care Alliance Survivorship Clinic at the Fred Hutchinson Cancer Research Center, says she sometimes has felt guilty about asking for more help to deal with ongoing issues, such as chronic pain and muscle weakness. She wore high-heeled shoes for two years because letting her heels strike ground was painful. “I guess I felt like I had already taken enough resources,” she adds. “And I didn’t realize there was anything to be done about it.”

At age 14, she received a diagnosis of osteosarcoma of the spine. After a year of intense chemotherapy and radiation, followed by five years of monitoring, she was done. “I really liked my oncologist and stayed in touch for many years, but I felt dropped by the hospital. There was no place for me to go anymore,” Noyes says.

Patients and survivors should discuss any follow-up tests that might be needed with their primary care physician.

While attending a fundraising event for leukemia and lymphoma research, Noyes visited a booth for the Fred Hutchinson survivorship program. She picked up a flyer, followed up with a phone call and was admitted to the program.

Soon, program staff members gathered Noyes’ records from previous doctors and summarized her diagnosis and treatments on a single page, “so I can share it with all my providers,” Noyes explains. By 2015, the Commission on Cancer will require such treatment summaries of all cancer centers seeking accreditation.

Then Noyes received assessments focused on risk factors, given her treatment history. A bone density scan, for example, revealed she had bone thinning, which can result from radiation and medical therapies. Now, she takes vitamin D and calcium supplements and does regular weight-bearing exercises, getting monthly guidance from a trainer.

Other patients have stumbled into survivorship programs. Eleven years ago, Mary-Talmage Rada received a diagnosis of stage 3 ovarian cancer and underwent treatment. Recently, her oncologist told the 43-year-old Lafayette, Colo., resident that she didn’t need to return. “I felt blindsided,” Rada says. “I thought, ‘I’m not ready for this.’”

Toward the end of the appointment, however, the oncologist examined Rada’s breasts. Feeling something suspicious, the oncologist referred Rada to a breast cancer specialist. At the breast cancer center a few days later, Rada learned she did not have breast cancer, but because she was a cancer survivor, she could participate in the center’s survivorship program, even though it was designed for survivors of breast cancer.

That doesn’t surprise McClure. “Breast cancer tends to be on the leading edge in cancer care,” she says.

Karen Syrjala and Scott Baker, codirectors of the survivorship program at Fred Hutchinson, say they’ve been privileged to offer services to all survivors, regardless of where they were treated. Both served on the NCCN survivorship panel, along with Friedman. And Syrjala says she hopes that the guidelines will do two key things: guide the regular care practices of oncologists and cancer centers across the country and determine coverage decisions by health insurance companies.

The survivorship guidelines are based on scientific evidence of effectiveness, as well as widely accepted professional understanding, Syrjala says. But not all healthcare providers understand the challenges unique to survivors, such as cognitive dysfunction and sexual issues, nor do they take the time needed to deal with them.

Check in, even if it’s just once every five years. And not only because we may need to tell you about a new risk we now understand, we may be able to tell you about a new solution.

When a healthcare provider avoids discussing sexual issues or fails to investigate sleep problems, survivors can be left with the mistaken impression that nothing can be done. Often, healthcare professionals sidestep delving into problems such as these because they know that even if they do uncover issues, they don’t have the proper resources to offer survivors.

Moving from guidelines to widespread implementation of survivorship support will be “a process,” Syrjala says. “First you release guidelines and make the oncology community aware,” she explains. “You publish them, and you talk and talk about them, especially in primary care settings.” Syrjala and her colleagues recently hosted a half-day workshop about the guidelines at a conference for nurse practitioners and nurses in Seattle, for example.

Survivors also bear some responsibility, however. They must try to understand which follow-up tests are needed, even in the absence of symptoms, and which tests are not recommended for their specific cancer or treatment.

New NCCN guidelines make clear that care for cancer patients doesn’t end when treatment ends.

In addition to drawing upon the expertise of staff members at Sloan- Kettering, Masters also values taking part in the cancer center’s support groups.

“We are all just really open and honest, which is what I and others need,” she says. “We have dealt with the big issues, like death. Look, everyone who has cancer is afraid of dying, but you need to address how to prepare for it, what to do.”

Friends did die, Masters says, and she continued to stay well. But her husband, who was known for his sense of humor, had a stroke a few years after her cancer surgery.

“I learned so much from the individuals in the Sloan-Kettering group. My husband and I were able to say things to each other that so needed to be said and to share some very special, funny moments together before he died.”

The moment she walks into the center, Masters says, people who know her ask how she’s doing. “They are an extended family that offers continual support and care, unlike centers that treat you and send you off to deal elsewhere with any issue other than your cancer.”

Masters takes a train into the city to visit old friends, as well as those she knows at Sloan-Kettering.

That’s important, Baker says. He urges survivors to stay in touch with staff members at his survivorship clinic, even if it’s only to update an address. “In 10 years, we’re going to know things that we don’t know now,” he says. “So, check in, even if it’s just once every five years. And not only because we may need to tell you about a new risk we now understand, we may be able to tell you about a new solution.”

Experts weigh in on developing standards for cancer survivorship care.

Katy Human

Chewing the Fat

Pipeline

New Requirements for Patients and Survivors Needs

National Guidelines Aim to Make Life Better After Cancer

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