Susan Meyers

David Lorber calls each day a gift. Diagnosed in 2004 with a slow-growing form of lung cancer, bronchoalveolar carcinoma, the chemotherapy pills that he takes each morning are a daily reminder that his time is likely to be limited.  When John Elliott was diagnosed with the aggressive brain cancer glioblastoma multiforme in 2004, he was told he had six to eight weeks to live. Now, almost four years later and after a lengthy regimen of medication, Elliott is defying the odds.  New cancer therapies are extending life for a growing number of patients. But the road for these cancer survivors can still be long and arduous, filled with social, emotional and physical challenges that extend well beyond treatment.

Lorber, Elliott and others are learning to grapple with this increasingly common reality, that the cancer experience doesn’t have to be an either/or situation — that either a person is “cured” or the illness is clearly terminal. Rather, the reality of cancer can be an ongoing circumstance &mdash; and one often marked for individuals by a weighty uncertainty about how long they can survive with the disease. 

Many situations can fall under the umbrella of “chronic cancer”: for instance, patients who have no evidence of disease but require ongoing medication; patients with measurable disease that has stopped growing or is progressing very slowly; people fighting a steady battle against metastases; or even those whose cancer, while in remission, has a high probability of returning (see sidebar). What can result is a state of mind that, while reflecting much of the same anxiety as that of anyone who has faced death after a cancer diagnosis, has the potential to last much longer.

“Although most of my patients certainly prefer their chronic cancer to the alternative, it doesn’t mean it’s easy,” says Steven Passik, PhD, attending psychologist at Memorial Sloan-Kettering Cancer Center in New York City, who primarily has been treating cancer patients for some 20 years. “Knowing that you have a finite number of years to live — that can be a very difficult cross to bear.”

Recently approved cancer drugs, often referred to as “targeted therapies,” are contributing to increased survival rates, says George Fisher, MD, PhD, an associate professor of Medicine at Stanford University in Palo Alto, Calif. Targeted therapies refer to drugs that disrupt biochemical pathways that tumors rely on to grow. By targeting key molecules in these pathways, the drugs tend to be less toxic to noncancerous cells (although they can have other side effects). 

Also, for some drugs, patients must continue their use for years or even indefinitely.

Targeted therapies have been extraordinarily effective for some rare diseases. For instance, imatinib (Gleevec) achieves remissions in the majority of patients with chronic myelogenous leukemia and also is effective against gastrointestinal stromal tumors, or GISTs, an uncommon cancer. Patients with more common tumors have also benefited from targeted therapies. Some recent successes include bevacizumab (Avastin) for colon, lung and breast cancers; erlotinib (Tarceva) for lung cancer; cetuximab (Erbitux) for colon and head and neck cancers; and sunitinib (Sutent) and sorafenib (Nexavar) for kidney and liver cancers.

Many patients on these medicines can live for years — perhaps indefinitely &mdash; with manageable side effects. “Targeted therapies have been extremely successful in some patients, converting their disease from a terminal to a chronic condition,” says Fisher, adding, “There are many more tumors in which these agents will likely be effective.”

How such cancer survivors cope with the daily battle against the disease can be as unique as the people themselves. “Cancer affects people differently,” says Alice Kornblith, PhD, social psychologist at Dana-Farber Cancer Institute in Boston. Those who tend to fare better are patients with a solid social support system; those with fewer other health conditions (known as “comorbidities”); people who are older; those who have had fewer stressful life events; and those who’ve had less toxic treatment, Kornblith says.

A 1994 study in the European Journal of Cancer by Russell Portenoy, a palliative medicine specialist, and colleagues including Kornblith found that cancer patients had on average five psychological and physical distress symptoms to deal with on a daily basis. Yet today, with the life-extending capabilities of today’s therapies, cancer survivors are challenged to resume as normal a lifestyle as possible.

Symptom management is a critical component of being able to function normally, notes Passik. A 2000 study by Victor Chang in the journal Cancer showed a direct linear relationship between the number of symptoms (such as lack of energy, pain, dry mouth, shortness of breath and trouble sleeping) and a patient’s quality of life, says Passik. 

“The science of symptom management has moved forward dramatically. While we have many drugs to manage pain, we must also ensure that patients are receiving the right drugs to manage the side effects of treatment.”

Just as difficult as controlling the physical symptoms is the psychological component of having to face cancer every&shy; day, notes Passik. “It takes a very specific type of mindset,” he says. “Having chronic cancer can be a full-time job. It takes a paradigm or shift in a person’s mindset. 

“When you’re first diagnosed, you gear up with family in the crisis mode and marshal their support. Now you’re digging in for the longer haul, and you’re dealing with a wide range of issues from attitude to parenting and work issues to integrating self-care and gathering long-term support.” 

Survivors with chronic cancer share many more of the challenges faced by cancer patients whose treatment course is finite. Some suffer from ongoing depression or anxiety as a result of their cancer experience. They may also worry about the effects of cancer on their spouses, their children, their employment and finances, and on their futures. And they face uncertainty in not always knowing what they can do to keep themselves healthy.

“Even with cancer survivors, 5 to 20 percent or more, depending on the cancer diagnosis and how long ago they were treated for cancer, will be negatively impacted by the cancer experience and will experience psychological distress one year or more after treatment,” says Kornblith. “Although their cancer and treatment may have been years ago, cancer-related thoughts, feelings and problems may continue to appear throughout their lives and impact quality of life.”

Research provides some indications of what treatments could help. A number of studies have shown small to moderate, but significant, psychological improvement in cancer patients who receive certain medications or other therapies, notes Kornblith. Examples of these therapies include anti-anxiety and antidepressant medications, education, support groups, individual and group therapy, identification and reinforcement of positive coping skills, relaxation techniques and problem-solving training.

“Group therapy can be extremely helpful,” adds Fisher. “People with long-term cancer often feel alienated from others. Group therapy allows them to talk about their feelings and mingle with people who feel the same.”

In addition, cultivating hobbies and new interests can help bring a sense of worth and direction to the life of a person in a long-term cancer battle, says Passik. That’s a strategy Elliott, who battled his deadly brain tumor with a regimen of temozolomide (Temodar) for three years, says he pursued out of necessity.

A mechanical designer/engineer from Aiken, S.C., Elliott never returned to work after his diagnosis because he no longer trusts his intellectual acuity. Instead, he now focuses his time on developing new and old interests like artistic ironwork, gardening and volunteer work with his church. “Now I spend my time doing things I like to do instead of things I have to do,” he says. 

“The people who do best are those who don’t battle the disease but dance with it,” says Fisher. “That means you have to be flexible and you have to know and accept your limitations. You have to allow people to help you, but without surrendering to the disease.”

Lorber dances with his ongoing disease every day in his Long Island, N.Y., home, as he swallows 150 milligrams of Tarceva for the tumor that continues to reside in his lungs. Facing his situation squarely — by helping others with lung cancer &mdash; has yielded a sense of purpose and satisfaction despite his uncertain situation.

 “I felt that I was mentally stable, so I felt that I could reach out to others and share my experiences,” he says. “If you don’t have [cancer], you don’t understand. You can’t relate in the same way.”

Ultimately, meeting the psychological challenge of chronic cancer requires a lot of perspective-taking and compartmentalizing, Passik says. “Suddenly, you want to live every moment of every day,” he observes. “But this is just not possible. You can’t live in the moment all the time. 

“You need to cultivate being involved in life with enough denial to put the cancer at arm’s length.”

When you're first diagnosed, you gear up with family in the crisis mode and marshal their support. Now you're digging in for the longer haul, and you're dealing with a wide range of issues.

The people who do the best are those who don't battle the diesease but dance with it. You have to allow people to help you, but without surrendering to the diesase.

Articles

Suvivors with chronic disease can face ongoing challenges.

Cancer for the Long Haul

In the crusade to prevent cancer, what you eat counts. That’s one of the messages of the latest “American Cancer Society Guidelines on Nutrition and Physical Activity for Cancer Prevention.”

 — Alcohol consumption should be limited to no more than two drinks per day for men and one drink per day for women. However, regular consumption of even a few drinks of alcohol per week is associated with an increased risk of breast cancer in women. This risk is particularly high in women who do not get enough folate (see next page). Alcohol also increases the risk of cancers of the mouth, pharynx, larynx, esophagus, liver and colo&shy;rectum. Although moderate alcohol intake appears to decrease the risk of heart disease, “from a cancer perspective, no alcohol is best,” says Kushi.

 — Along with a number of other defense systems, the body appears to use nutrients known as antioxidants to protect itself against damage to tissues caused by free radicals &mdash; unstable molecules within cells that arise constantly as a result of normal metabolism or are introduced in the body by environmental factors. Because free-radical damage is associated with increased cancer risk, the so-called antioxidant nutrients (which include vitamin C, vitamin E, carotenoids and other phytochemicals, or plant-based chemicals) are thought to protect against cancer. Foods rich in antioxidants include orange and red fruits and vegetables and green leafy vegetables, as well as nuts, grains and some meats, poultry and fish.

 — Current evidence has not demonstrated that aspartame, a low-calorie artificial sweetener, has any link to increased cancer risk.

 — Beta-carotene is an antioxidant and precursor to vitamin A and is found in vegetables and fruits such as carrots, sweet potatoes, cantaloupe and spinach. While consuming fruits and vegetables that contain beta-carotene may be helpful in reducing cancer risk, studies have shown that consuming high-dose beta-carotene supplements should be avoided because they may, in fact, increase cancer risk.

 — A high calcium intake, through diet or supplements, has been associated with lower colorectal polyp recurrence and cancer, but also with increased risk for prostate cancer. Therefore, the guidelines recommend that men and women should consume recommended levels of calcium but avoid excessive intakes. Choose low-fat or nonfat dairy products to reduce intake of saturated fat. 

 — While caffeine may heighten symptoms of fibrocystic breast lumps (a type of benign breast disease) in some women, there is no evidence that it increases the risk of breast or other types of cancer.

 — Certain types of fat, such as saturated fat, may increase cancer risk. In addition, high-fat diets tend to be high in calories and may contribute to obesity, itself a cancer risk factor.

“We advocate what is called a plant-based diet. That is, fruits and vegetables should make up the bulk of your meal, and animal [based] food should be a side dish instead of the primary part of your meal.”

 — Fish is a rich source of omega-3 fatty acids. While animal studies have found that these fatty acids suppress cancer formation or hinder its progression, there is limited evidence suggesting the same benefit in humans.

 — Folate is a B vitamin found in many vegetables, beans, fruits, whole grains and fortified breakfast cereals. Folate deficiency may increase the risk of cancers of the colorectum and breast, especially in people who consume alcoholic beverages.

 — Garlic and other vegetables in the onion family (known as allium vegetables) have been widely recognized for their health benefits. However, garlic’s role in cancer prevention is still under investigation. 

 — Lycopene is the red-orange carotene pigment found primarily in tomatoes and tomato-based foods, and to a lesser extent in watermelon and pink grapefruit. While several studies have reported a reduced cancer risk linked to consumption of tomato products, experts are not certain whether lycopene is the micronutrient responsible for this association.

 — Unlike the positive attributes of fruits and vegetables, the cards appear to be stacked fairly high against red meats. For instance, the iron content in red meat may generate free radicals in the colon that cause DNA damage. Substances used to process meat such as nitrates/nitrites and salt contribute to the formation of nitrosamines, chemical compounds that can likewise damage DNA. The fat content in meat may also contribute to an increased risk. And substances that cause DNA mutation and cancer are produced by cooking meat at high temperatures and by charcoal grilling.

 — While consumption of olive oil has been extolled for its heart benefits, it most likely plays no role in causing or preventing cancer. 

 — Although high doses of the sweetener saccharin have been implicated in cancer in rats, there is no evidence of a link in humans. Saccharin has been removed from the list of established human carcinogens by the National Toxicology Program.

 — Currently, moderate levels of salt used in cooking or for flavoring have not been tied to cancer risk. But studies in other countries have linked diets containing large amounts of foods preserved by salting and pickling with a higher risk of stomach, nasopharyngeal and throat cancer.

 — Selenium is a mineral that contributes to the body’s defenses against antioxidant damage. It can be found in foods such as potatoes, eggs, whole-wheat bread, tuna, turkey and chicken. Studies in animals have suggested that selenium protects against cancer, and one human trial revealed that selenium supplements might reduce the risk of cancers of the lung, colon and prostate. However, well-controlled studies are needed to confirm the mineral’s benefits in humans.

 — Soy-derived foods are an excellent source of protein and can serve as an alternative to meat. Soy contains several phytochemicals, or compounds derived from plant-based foods, some of which have weak estrogen-like activity and appear to protect against hormone-dependent cancers in animal studies. However, data are limited to support a benefit in reducing cancer risk. 

McCullough also warns that high doses of soy may stimulate cell growth in estrogen-responsive cancers and that soy, therefore, should be consumed in moderate amounts.

“If you’re looking for a magic bullet to decrease your risks for cancer, there is none. Ask yourself, does my diet look mostly like plant foods? Moving in that direction will make the most impact.” 

To maximize cancer prevention factors, remember that the key to nutrition is variety. A colorful diet in terms of fruits and vegetables will help you get the variety of nutrients you need, McCullough recommends. 

“What we are learning about cancer and diet is an evolving process,” she adds. “Many of these foods probably contain many more compounds we have not even discovered yet.”

Aside from tobacco use, for the majority of Americans weight control, dietary choices and activity level are the most important modifiable factors that can impact risk for cancer, according to the new guidelines, which were developed by a national panel of experts in cancer research, prevention, epidemiology, public health and policy. The guidelines were published in the December issue of 

Healthy dietary choices not only provide important nutrients that may aid in the prevention of cancer, but can also help individuals maintain an appropriate weight. Research suggests that one-third of the more than half-million U.S. cancer deaths each year can be attributed to factors related to diet and physical activity, including being overweight or obese, while another third are caused by exposure to tobacco products. The last third are due to genetic variations combined with environmental factors as well as other determinants.

Rising to the top of the risk-factor picture is the impact of being overweight or obese, says Lawrence Kushi, ScD, lead researcher and director of etiology and prevention research for Kaiser Permanente in Oakland, Calif., and one of the authors of the guidelines. Roughly two-thirds of Americans are overweight or obese, conditions that are clearly associated with increased risk for developing many malignancies, including cancers of the breast in postmenopausal women, as well as colon, endometrial, esophageal and kidney cancers. Evidence also suggests that obesity may increase risk for cancers of the pancreas, gallbladder, thyroid, ovaries and cervix. 

The guidelines, updated every five years, emphasize a diet rich in fruits, vegetables and whole grains, with limited consumption of processed and red meats. Since publication of the last guidelines, “the evidence has become stronger regarding the impact of red meats and processed meats in causing cancer,” says Kushi. “We advocate what is called a plant-based diet. That is, fruits and vegetables should make up the bulk of your meal, and animal [based] food should be a side dish instead of the primary part of your meal.”

Kushi advises against relying on vitamin or mineral supplements to get the benefit of nutrients and antioxidants found in fruits and vegetables. According to the guidelines, some studies have shown that high doses of supplements that isolate specific nutrients have demonstrated no benefit in reducing cancer risk and in some cases may be harmful to your health. “While I wouldn’t recommend avoiding supplements completely, large levels do not appear to have any benefit,” notes Kushi. “Supplements such as a multi vitamin and calcium still appear to be helpful.”

Other dietary recommendations include eating smaller portions, eating fewer high-calorie and high-fat foods, and substituting fruits and vegetables for calorie-dense foods such as French fries, cheeseburgers, pizza or doughnuts.

“Many of the foods people eat in our country are not rich in nutrients and don’t add any nutritional value except empty calories,” says Marji McCullough, ScD, RD, a nutritional epidemiologist for the American Cancer Society and also an author of the guidelines. 

Another problem is that two of the most common vegetables consumed in the U.S. are potatoes and lettuce, which are not rich in cancer-prevention properties, notes McCullough.

Ongoing research points to potential cancer-fighting benefits of dark green and orange vegetables; cruciferous vegetables, such as cabbage, broccoli, cauliflower and Brussels sprouts; soy products; legumes, such as beans and peas; allium vegetables, such as onions and garlic; and tomato products. 

To maximize dietary benefits, the guidelines recommend eating at least five servings of vegetables and fruits each day. And for improved overall health, consume even higher levels.

“If you’re looking for a magic bullet to decrease your risk for cancer, there is none,” says Kushi. “It’s about your overall dietary pattern. Ask yourself, does my diet look mostly like plant foods? Moving in that direction will make the most impact.” 

Along with various lifestyle factors, the new guidelines address some common concerns about the following dietary components:

How what you eat [and how much you exercise] can affect your cancer risk.

Susan Meyers

Cancer for the Long Haul

Making Meals Matter

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