Sandra Gordon

When Laura Hertzog was diagnosed with non-Hodgkin lymphoma in 2008, she chose treatment at a major New York City cancer center. There, she was cared for by a battalion of medical professionals, including her oncologist, a rotating cast of oncology nurses, administrative medical staff, technicians who took vitals and performed imaging scans as well as a pulmonologist and a cardiologist, to name a few.

“You deal with so many different people who are themselves dealing with so many different people,” says Hertzog, a 45-year-old attorney.

Hertzog is far from alone in her experience, which she describes as being put through a life-saving “cancer factory.” Today’s cutting-edge cancer care has become so complex that patients are typically treated by a multidisciplinary team of specialists, who themselves may be supported by specialists behind the scenes.

To help patients through the medical maze, some cancer hospitals and treatment facilities, such as Baylor Charles A. Sammons Cancer Center at Dallas, employ patient navigators like Cynthia Robinson-Hawkins, RN, herself a cancer survivor.

“We make sure the patient understands what to do, where to go next and what’s going to happen,” she says. If a patient navigator isn’t available to you, learning about the medical professionals you’re apt to encounter can make the treatment process less overwhelming.

When an abnormality, such as a lesion or mass, is first discovered, you may already know the drill: A sample is taken, usually by a radiologist, surgical oncologist or dermatologist, depending on where the questionable finding is located. Tissue is then sent to a pathologist, a doctor who reviews the tissue and cells in the lab to determine if it’s malignant and sends a pathology report to your physician. The pathology report indicates the type of cancer and special protein and genetic tests may be done on the tissue to help with treatment decisions.

With the possibility of a blood-related cancer, blood is drawn and sent to the lab for analysis. Further testing may be needed, such as more blood work, PET (positron emission tomography) or CT (computed tomography) imaging scans or an MRI (magnetic resonance imaging) to help the physician stage the disease.

Depending on your diagnosis—for example, if it’s a rare cancer&mdash;your physician may refer you to a major cancer center, which offers a specialized multidisciplinary approach to care.  Here’s a rundown of who is likely to be part of your healthcare team and how to take full advantage of the expertise and personal attention available to you.

: This physician, who specializes in treating cancer with systemic medical therapy, such as chemotherapy or biological therapy, will discuss your pathology report with you, including the stage of your disease, your treatment plan and its trajectory. You then may be referred to other specialists within the hospital or cancer treatment facility, depending on other medical conditions you have. If you have a history of heart disease, for example, you may need to be seen by the hospital’s cardiac service first before starting cancer treatment. If you require chemotherapy and radiation before having surgery, the medical oncologist will dictate the chemotherapy portion of your treatment plan. Post-surgery, you will continue to be monitored by the medical oncologist, to make sure the disease will not recur. Your treatment going forward will be based on your response to initial treatment.

: If surgery is appropriate for your situation, you’ll be referred to a surgical oncologist or other surgeon who specializes in the surgical procedure you need. In some cases, surgery will be the first phase of treatment and may impact further treatment.

: If radiation becomes part of your treatment plan, a radiation oncologist will manage the radiation portion. This physician has the expertise and training to prescribe radiation therapy treatments and determine the details of the area to be treated and the dose and schedule.  In addition, you may encounter a number of technicians who operate the radiation equipment and are trained to support the radiation oncologist.

: After being called into the exam room, you may be seen by a fellow, a full-fledged physician in the process of specializing in a particular field of oncology, if you’re being treated at an academic medical center (teaching hospital).The fellow will  do a physical exam and review your case with your physician.

: Oncology nurses specialize in caring for cancer patients in several different settings, including inpatient and outpatient care. Nurses also may administer chemotherapy in the infusion room and assist the doctor during appointments. They may be a registered nurse (RN) or an Oncology Certified Nurse (OCN) or have received special training to become an Advanced Oncology Certified Nurse (AOCN) or an Advanced Oncology Certified Clinical Nurse Specialist (AOCNS). In some states, nurses can become Nurse Practitioners (NP), who may assist you instead of your physician. If you don’t know your oncology nurse’s role, ask about his or her specialization and the meaning of the letters after his or her name.

A patient navigator is typically a registered nurse, social worker or trained community member (sometimes a cancer survivor), who can help  patients “navigate” the healthcare system, appointments and financial issues. Patient navigators won’t tell patients what to do but will suggest questions to ask their doctor and help them establish priorities. Being prepared can decrease stress and anxiety.

: If it’s determined that you may need social or financial support, a social worker may be summoned to determine what options might be available to you, such as a visiting nurse or enrolling in Medicaid or Medicare. The social worker can also meet with you for counseling or refer you to a psychologist or psychiatrist, a medical doctor who can prescribe psychiatric medication, if necessary.

: Before chemotherapy, an oncology clinical pharmacist, who specializes in providing pharmaceutical services to improve outcomes in oncology patients, might dispense medication to reduce the risk of nausea, pain and other side effects.

Depending on the type of cancer and other medical conditions you may have, your healthcare team may also include an internist and other specialists within the hospital or treatment facility, including a registered dietitian, who helps manage the nutritional aspects of cancer; bone marrow transplant specialists; pain management specialists (also called palliative care specialists); and pulmonologists—physicians specializing in lung conditions. You may also be referred to rehabilitation or to a support group. 

At medical appointments, record the names and telephone numbers of key members of your healthcare team, such as your doctor, the physician's assistant and nurse. Find out who is the main coordinating physician that is organizing the overall care plan. Always ask as many questions as you need to, to understand what's happening to you, including: "Should I call you if I develop this symptom?" 

If it's not clear who you should call if there's an issue, verify it before leaving your appointments, so you always feel you have a lifeline to your medical team."We want patients to be well-informed about their disease and in agreement with the treatment plan that's determined," says Joanne Taylor, RN, a clinical nurse specialist at Memorial Sloan-Kettering Cancer Center in New York City. Moreover, a treatment plan is no good if you don't follow it. Expected side effects are less scary if you know they're a possibility, so make sure it's part of the discussion. 

Despite the multitude of medical professionals you'll likely encounter, keep in mind that you are the most important part of your healthcare team. "The reality is that you're your own best advocate because no one is paying as much attention to your own medical care as you are," Hertzog says.

Articles

When you are diagnosed with cancer, you may be cared for by a battalion of medical professionals and support staff with titles that may be unfamiliar to you.

Meet Your Healthcare Team

When Dahlia Cox began chemotherapy as part of her treatment for colon cancer in July 2002, she lost 12 pounds in three weeks. “I couldn’t keep food down,” says the 80-year-old retired kindergarten teacher from Decatur, Georgia. 

What Cox experienced was anorexia, loss of the desire to eat or lack of hunger, which is only one aspect of a complex syndrome called cachexia or cancer “wasting”—the loss of weight common among patients with advanced cancer. In fact, according to the American Cancer Society, up to 40 percent of cancer patients report unexplained weight loss at first diagnosis; 80 percent experience weight loss in cancer’s advanced stages. 

 Understanding the source of cachexia is important, says Daniel W. Nixon, MD, president of the Institute for Cancer Prevention in New York City, who has studied the issue for more than 25 years. 

 “The first thing that a doctor and patient must determine is whether it is primary or secondary,” says Nixon. “Primary means the tumor is the direct cause by impacting the body’s ability to maintain weight for some reason. Secondary cachexia is related to treatment, and it can often be impacted more effectively than primary.”

 Primary cachexia can cause early satiety—getting full too fast and/or cancer-related changes in the bowel that inhibit nutrient absorption or weight loss from unknown tumor host mechanisms. Secondary cachexia is associated with treatment that may include surgery issues, nausea, vomiting, and food aversions brought on by chemotherapy and radiation as well as obstructional cancers of the oropharynx and esophagus, in which consuming food in general is a challenge.

 Those with gastric, pancreatic, small-cell and non-small cell lung cancer are especially at risk for cachexia because the tumor itself can set off a domino effect of hormonal and inflammatory changes that throw the body into a hypermetabolic state—one in which calories burn at a much higher rate than normal. 

 “Tumor-induced cachexia is like pushing on the gas pedal of a car stuck in the mud,” says registered dietitian Rebecca Wright, RD, Tulsa, Oklahoma. “You can eat and eat, but lose weight. We call it ‘hitting the wall.’ ” 

 Dr. Nixon says such weight loss is hard to manage and no data show conventional nutrition will have an impact. 

 “Cancer is a growing group of cells that needs food,” Nixon says. “It’s like a parasite, growing as the body shrinks. What we are trying to do is figure out the mechanism that allows the tumor to do that and block it.”

 What makes tumor-induced cancer cachexia particularly problematic is that the body will preferentially cannibalize protein in the form of lean body mass, which includes the large muscles of the arms and legs as well as organ tissue in the heart and diaphragm. As a result, breathing can become more difficult and the heart can become stressed, says Wright. Cachexic muscle loss can also heighten fatigue and affect long-term prognosis.

One of the best ways to conquer cachexia is to stick to your treatment plan. “We know the chemotherapy, for example, is working when a patient starts gaining weight,” says Herman Kattlove, MD, a medical oncologist in Los Angeles and medical editor for the American Cancer Society. However, for some cachexic patients, such as those with advanced breast cancer, weight gain during treatment may worsen prognosis.  

“Women need to gain what is called functional weight,” says Nixon. “Water weight and fat weight are not good and could be detrimental.” 

Overall, to combat secondary cachexia, “It’s important to consolidate calories by consuming as many nutrient-dense calories as you can,” says Kim Dalzell, PhD, RD, director of Holistic Nutrition Counseling Services, Cancer Resource Center, Gurnee, Illinois, and author of Challenge Cancer and Win! Step-By-Step Nutrition Action Plans For Your Specific Cancer. 

But how do you do that when you don’t feel like eating, fill up too fast, or otherwise have trouble consuming enough calories? Here are some timely weight-maintenance tips to chew on. 

Rev your appetite: To stimulate appetite and promote weight gain, your doctor may prescribe steroids or a synthetic progestin (female hormone) such as Megace (megestrol) or Marinol (dronabinol), which contains a synthetic version of the active ingredient in marijuana. Take them as prescribed. “They don’t work for everyone,” says Kattlove. 

“Marinol definitely gave me the munchies,” says Nathan Ehrlich, a 6-foot, 19-year-old sophomore at Brandeis University in Boston, who got down to 130 pounds after receiving a bone marrow transplant in 2000 to treat his leukemia. Ehrlich adds that he was unaware of how much his body would be affected, and while being treated for acute myeloid leukemia, he preferred to eat cold foods like ice cream, popsicles, and salads because the chemotherapy dulled his taste buds and dried out his mouth.

Pack on protein: Because cancer cachexia can preferentially metabolize stored protein (muscle), you’ll generally need to consume 20% more daily protein than normal—or 1.2 grams of protein per kilogram of your body weight&mdash;to retain lean body mass, says Julia Hemingray, a registered dietitian at Food and Friends, an organization that delivers specially prepared meals at no charge to cancer patients in Washington, D.C. 

Of course, whole food sources of protein, such as lean red meat, fish, and skinless chicken are excellent options. But you may not be able to eat enough of them to meet your quota, in which case, it’s a good idea to “spike” your foods with whey-based protein powder. Mix protein powder into soups and stews, oatmeal, fruit juice, and smoothies. 

Don’t be a fat phobic: Omega-3 fatty acids, a “healthy” type of fat found in cold-water fish such as salmon and fish-oil supplements, are thought to help minimize the cascade of hormonal and inflammatory events in the body that drive hypermetabolic cachexia. And although more investigation is needed, recent studies indicate that omega-3 fatty acids may reverse cancer cachexia. 

Take antinausea drugs preventively: If your doctor prescribes an antinausea drug such as Zofran (ondansetron), Kytril (granisetron), or Anzemet (dolasteron), take it before you feel nauseous (before you’ve had a chemotherapy treatment). “It’s easier to prevent nausea than to treat it,” says Wright. Another anti-nausea drug, Emend (aprepitant) was recently approved by the FDA and has been shown to be helpful in minimizing delayed chemotherapy-induced nausea.

Divide and conquer: Instead of structuring your day around breakfast, lunch, and dinner, which can seem like too much to tackle, think of your day as a running buffet and eat a couple of bites here and there, says Carolyn Katzin, a certified nutrition specialist at the Center for Health and Healing, St. Vincent’s Medical Center, Los Angeles, California, and author of The Cancer Nutrition Center Handbook. 

“And if you aren’t hungry at dinnertime, make breakfast or lunch your main meal,” she says, adding that heating food in the microwave will prevent odor-induced nausea. “Microwaved food tends to give off less aroma than food that’s cooked or baked.” Another option she recommends is eating cold foods instead. And sip smoothies and other beverages through a straw with a lidded cup.

Eat your water: Instead of simply drinking water throughout the day and with meals, sip vegetable soup or low-sodium vegetable or fruit juice instead. All are nutrient-dense calorie sources that can help maintain cellular health and help you stay hydrated. 

Fiber up: Besides a cornucopia of nutrients, whole grains like oatmeal and fruits and vegetables are a good source of fiber. “Fiber is especially important for cancer patients because it can help control the diarrhea or constipation they may be experiencing from chemotherapy, which can interfere with nutrient absorption,” says Hemingray.

Don’t wait to weight train: Even though you may be fatigued, it’s important to resistance train to maintain and rebuild lean tissue. Do what you can. “Besides sticking to an anticachectic diet, we have patients do bicep curls with 2- to 3-pound hand or wrist weights for 30 to 90 seconds several times throughout the day,” says Keith Block, MD, an integrative oncologist and editor of Integrative Cancer Therapies. “You might also try strapping on ankle weights and, while sitting on the edge of your bed, extend your knees slowly, one at a time. Isometric exercises and resistance bands can also be helpful for preventing cachexic muscle loss. In general, “the adage, ‘If you don’t use it, you lose it,’ holds true,” Block says. 

Nixon says research continues as to the causes and control of cachexia, including how to starve the tumor and not the body.

Editor’s note: Dahlia Cox passed away April 8, 2003. CURE is proud to honor her memory.

“And I wasn’t hungry, so I didn’t want to eat.” Alarmed by her weight loss, Cox’s physicians stressed the importance of trying to maintain her standard 124 pounds throughout her six months of treatment. Since then, Cox has been steadily gaining. Her secret: “I realized that I just couldn’t say, ‘Oh, I’m not hungry today,’ and give up. I had to work at eating.” 

 Anorexia and cachexia is common among patients with advanced cancer.

Sandra Gordon

Meet Your Healthcare Team

Web Exclusive: Weighing In: Preventing Cancer Weight Loss

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