care
CANCER
for anyone touched by cancer SUMMER 2014
The best surgery for kidney cancer
Preventing dry mouth
Targeting tumors precisely
Tricks to increase calories
Brought to you by the
A building full of hope
INSIDE
Caring for patients, searching for cures, saving lives Welcome to Cancer Care, the premiere issue of a quarterly publication dedicated to cancer patients, families and friends, caregivers, researchers, donors and everyone else touched by cancer. This issue of Cancer Care heralds the opening of the Upstate Cancer Center, the Syracuse region’s most comprehensive resource for the diagnosis and treatment of cancer. You will find a full array of outpatient services for children and adults offered under one roof, in a gleaming new building made possible in part through community donations. We have the region’s only cancer program approved by the American College of Surgeons’ Commission on Cancer, achieving maximum commendation for the last 10 years. And, we are the region’s only provider for children who have cancer. Upstate is proud to be part of the Children’s Oncology Group, an international network which provides the same treatments and recovery rates as high-profile national centers. Our team of experts delivers personalized care, tailored to each patient, using a true multidisciplinary approach. Surgeons, medical oncologists, radiation oncologists and other specialists work together as part of a staff of 90 boardcertified physicians, all of whom teach as professors in Upstate’s College of Medicine. BUILT FOR PATIENTS
Upstate Medical University’s Cancer Research Institute is staffed with scientists who are dedicated to finding cures for cancer and translating laboratory discoveries to patient care. Within the walls of the Upstate Cancer Center, you will find top-notch medical care, a variety of support services and many nice details (a healing garden, meditation room, family education center and such.) But most importantly, this is where you will find hope.
care
CANCER
MAKING A DIFFERENCE
Bouncing back from childhood cancer page 3 Where does hope come from?
page 4
Art is part of healing
page 6
A 12-month garden in Syracuse
page 8
LIVING WITH CANCER How to bow out of social plans
page 9
Books for laughing, crying
page 9
Energy-boosting guacamole
Here in Central New York, patients have access to the latest technology, clinical trials and medical care in a healing environment designed to lift spirits and foster hope. PHOTO BY ROBERT MESCAVAGE
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for anyone touched by cancer
SUMMER 2014
CANCER CARE
Foundation leads way for raising money and awareness
page 13
PUBLISHER Wanda Thompson PhD Senior Vice President for Operations
The importance of advocacy
page 14
Genetic counselor/humanitarian
page 14
EXECUTIVE EDITOR Leah Caldwell Assistant Vice President, Marketing & University Communications
SEARCHING FOR CURES Choosing the best surgery for kidney cancer Targeting tumors with precision
page 11
Tricks for increasing calories
page 12
How to manage fatigue
page 12
On the cover: Zach Ellingson on his way home from an appointment with Upstate’s Dr. Kerr. The new Upstate Cancer Center is behind him. PHOTO BY SUSAN KAHN
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Amber Smith
UPSTATE CANCER CENTER MEDICAL DIRECTOR Leslie J. Kohman, MD
page 15 back cover
ADVICE FROM EXPERTS Preventing dry mouth
MANAGING EDITOR
Upstate Medical University in Syracuse, NY, is part of the State University of New York. It is an academic medical center with a robust biomedical research enterprise and an extensive clinical health care system that includes the Upstate Cancer Center, Upstate University Hospital’s downtown and community campuses, the Upstate Golisano Children’s Hospital, and many outpatient facilities.
ASSOCIATE ADMINISTRATOR Richard J. Kilburg, MBA The Upstate Cancer Center provides the Cancer Care magazine quarterly. Cancer Care is a companion publication of Upstate Health and is circulated as a general interest publication, with a focus on care and cures. FOR INFORMATION ON CANCER CENTER PATIENT SERVICES, call 315-464-HOPE (4673) or visit us online at www.upstate.edu/cancer. ADDITIONAL COPIES: 315-464-4836. TO SUBSCRIBE OR MAKE REQUESTS: magazine@upstate.edu For corrections, suggestions and submissions, contact Amber Smith at 315-464-4822 or smithamb@upstate.edu Cancer Care offices are located at 250 Harrison St., Syracuse, NY 13202
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Bouncing Back
CARING FOR PATIENTS
Zach is ready to play ball again
At the age of 8, Zach Ellingson had heard of cancer. It was a disease that other people got.
“Thinking about it now,” he says as a 12-year-old, “I know that I am ‘other people’ to other people.”
Zach is recovering from acute lymphocytic leukemia, the most common type of cancer in childhood, a cancer of the blood and bone marrow. “He was a very, very sick boy for a while,” says his mother, Jennifer Deweerth, of Clinton, NY. She says that Zach started getting sick around spring break of second grade in 2010. He had one cold after another, and pink eye, and strep throat, and he was very tired. The family cancelled a weekend trip because Zach was feeling so bad. That weekend, he started vomiting dark blood. His pediatrician ordered blood tests and quickly sent Zach to Upstate Golisano Children’s Hospital. Doctors found that Zach had the second highest white blood cell count they had ever seen. “I was terrified. I had no idea what was going on,” Zach recalls. “They were telling me to stay calm. I knew something was up judging by their emotions and facial expressions.” That first night in the pediatric intensive care unit, Richard Sills, MD, took care of Zach. Then Karol Kerr, MD, oversaw the youngster’s treatment, which included seven months of chemotherapy infusions, followed by radiation. After that, Zach took a chemotherapy pill daily for three and a half years. He missed almost half of third grade. Today he’s a sixth grader who comes for blood tests and a checkup every month at Upstate. Leukemia left Zach with a brain that does not work like it used to. He does not think as fast as before, and his short term memory is lacking, Deweerth says of her son. He fatigues easily, but he is getting back into sports. He plays soccer, lacrosse and football. Karol Kerr, MD
Zach says he was hospitalized for a couple months, but says it felt longer. Sleeping in the hospital was difficult with the oxygen mask he wore at first. He missed his friends, and his parents and brother. But the worst part? “Probably just the suspense,” he says. “I really didn’t know if I was going to make it or not.” The nurses and doctors were nice, Zach says. “They really took good care of me. And, there was a Tim Horton’s.” He has fond memories of blueberry muffins his mom brought him from the café and bake shop. Deweerth says her son has recognized some positives that came from his experience. “He has been able to see how strong he is, and it has given him a sense of compassion for others.”
Zach Ellingson has monthly appointments with his oncologist Karol Kerr, MD (inset.) The pediatric hematologyoncology outpatient center moves to the new Upstate Cancer Center. PHOTO BY SUSAN KAHN
Reach the pediatric hematology/oncology specialists at 315-464-5294.
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BUILT FOR PATIENTS
Nature theme provides refuge during cancer care
When you set out to design a cancer center, “there is a level of hopefulness that you want to communicate,” says architect Saul Jabbawy. “Where does hope come from? Hope comes from being in a great medical facility. A cutting-edge modern look reassures people of the level of care they’re going to receive.” At the same time, you want a calm environment that will help people feel relaxed.
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BUILT FOR PATIENTS
That was the challenge for Jabbawy and the design team. He is the director of design for EwingCole, the architectural and engineering design firm for the construction of the Upstate Cancer Center. “You never really get away from the fact that you have cancer, but you want an environment that creates a level of visual stimulation that allows people to escape,” he says. The gleaming blue glass-fronted building connects to Upstate University Hospital, downtown, sharing the circular drive entrance and a canopy-covered drop-off area. The new center consolidates outpatient cancer services for adults and children and overlooks a four-season healing garden.
Fast Facts ●
Parking is free, and you can be protected from the weather from the parking garage to your medical appointment.
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Choose the level of privacy you feel like for infusion treatments. The area overlooks the garden and offers private rooms or space where you can be among other patients.
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You are likely to notice something new at each visit. The building was designed with purposeful nuances such as a vertical slat screen in the lobby that is wood veneer on one side and white on the other.
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The building contains a meditation room, plus a boutique for patient apparel and other personal products.
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Before they were hoisted to the roof, two support beams were covered with signatures and messages of hope by cancer patients and others who have been touched by the disease.
One of the first construction tasks was creating concrete bunkers up to 5 feet thick to house the sophisticated linear accelerators used in radiation oncology. While an integral piece of a modern cancer center, the equipment can be intimidating. So Jabbawy was mindful to create diversions. A nature theme carries throughout the cancer center, and vibrant colors are juxtaposed against a white background in many hallways. Where possible, medical necessities are downplayed. For instance, “in infusion, we tucked all the sinks away so when you walk into the corridor the first thing you see is not a sink.” Instead you see a garden, planted with foliage that will provide interest all four seasons. The infusion area is divided into an area for adults, and an area with zones for teens and children. The building also contains rooms for medical exams and genetic, financial and other counseling services, plus a family resource center. A grand staircase in the front of the lobby is meant to promote physical activity, although elevators are nearby. Surrounding the outside of the building are narrow vertical windows against subtle horizontal lines, a feature that was deliberated for months, says Upstate’s Marius Dumitran, the senior project manager for the cancer center. “If you look at that façade, it’s almost like musical notes in abstract,” he explains. Let your mind conjure a song about hope. EwingCole Director of Design, Saul Jabbawy (near right), has been touched by cancer. His brother and sister have each battled cancer, and he has lost seven aunts and uncles and a cousin to the disease. Cancer has also touched Upstate’s senior project manager, Marius Dumitran (far right), whose wife is a breast cancer survivor. BUILDING PHOTO BY ROBERT MESCAVAGE
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Nature nurtures
BUILT FOR PATIENTS
Sculpture and art work reflect outdoors Sculptor Ellen Steinfeld was focused on creating something that would be welcoming and uplifting, representative of life and hope. When she finished, she had created a shimmery “Tree of Hope” model out of stainless steel. Her work was chosen as the sculpture that greets patients, visitors and staff at the Upstate Cancer Center entrance, several yards from the main Upstate University Hospital entrance. “It’s like a tree, but it’s very abstracted. I tried to have the whole image personify that universal symbol of well-being,” says Steinfeld, of Buffalo. She says admirers can read into it what they want. “There is a bird at the top symbolizing flight, or hope. Some of the shapes can be symbolic of a heart or a person.” Once Steinfeld made her design, she had raw steel shipped to a factory for a special finish that removes steel’s natural dullness. She worked with a computer-aided design programmer to create a cutting pattern. The shapes were cut using a precision waterjet cutting machine. Then Steinfeld worked with a fabricator at the old Bethlehem Steel mill in Lackawanna to assemble the tree.
The tree is 7 feet tall and will be mounted on a pedestal. In daylight, the sun provides subtle variations in color. Lights at night “will produce much more dramatic and magical effects,” she says. Both of Steinfeld’s parents died from cancer. So have many of her friends. “Art is part of the healing process, as far as I’m concerned,” she says. “Art is the living life. It represents life. That’s why it’s so important.”
Shapes were cut from sheets of steel like dress patterns are cut from fabric.
PHOTOS BY SUSAN KAHN
The sculpture in front of the cancer center was welded at a foundry in Buffalo.
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Built for patients
Meet three more artists: MARIUS DUMITRAN OF EAS T S YRA C US E
Work: Photographs of plants, landscapes, trees and birds. An architect, he has been the senior project manager for the cancer center. Background: “I used to be a painter. My passion for photography basically began when I wanted to learn more about painting clouds, because they are so elusive. From clouds, I jumped to flowers.”
by Marius Dumitran
Context: “It is proven psychologically that nature gives us a certain balance and refuge. at’s why many cancer centers try to set themselves in natural environments.”
MARY GIEHL OF SY R ACUS E
Work: 4-foot wide wall installation called “Under a Microscope,” crocheted from sewing thread. Each circle takes about 45 minutes to craft. e finished product is mounted with insect pins. Inspiration: Algae. When people look at her work, “I’m hoping that they will think of organisms. Will they think of algae? Probably not. But the name ‘Under the Microscope’ will give them the direction of looking at cells or organisms.”
by Mary Giehl
Context: She worked for 20 years as a nurse at Upstate University Hospital, caring for patients in the emergency department and the adult and pediatric intensive care units. She cared for children with cancer. And four years ago, she lost her brother to kidney cancer.
MARY TOUCHETTE OF DEW ITT
Work: Semi-abstract watercolors with mixed media called “Queen’s Lace” and “Pussy Willows.” Message: “I would certainly hope my art would give people a connection with God our maker and give them strength to get through. Cancer is a terrible thing to have to experience.” Context: Her infant daughter, Ann, was diagnosed with acute lymphocytic leukemia in 1976 and treated at Upstate University Hospital until her death in 1983. Later, Mary’s brother died from lung cancer.
by Mary Touchette
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BUILT FOR PATIENTS
Growing a healing garden
PHOTOS BY WILLIAM MUELLER
Trees and plants were installed in June in the healing garden. Below right: landscape architect Diane Burkard talks with Martin Cleaver of ProScapes.
A four-season garden grows on the roof of the Upstate Cancer Center’s second floor. Visitors may rest on its benches. Patients receiving infusions gaze through windows at the foliage. The space feels like a courtyard. “It’s quite warm and sunny there,” says Danielle Carr, the project manager at Environmental Design & Research who oversaw the garden project. One challenge was to choose plants that will be ornamental, even through Central New York winters. Add to that the challenge of planting on a roof. “The weight of everything and the cultural conditions are different on a roof,” says project designer Diane Burkard, Carr’s colleague. “The growing conditions are more challenging, and the extremes of heat and cold are greater.” She says that evergreens of various colors are included, along with plants that have interesting bark. “We have river birch and red twig dogwood, and different junipers. We have some Japanese maple. Those have a beautiful outline. The form of the tree is graceful.” Around the trees are shorter plants that offer variety in color and texture, says Carr. “There are seasonal changes — from the vegetative growth of early spring, to summer flowering, to colorful fall foliage. With the grasses and the perennials, there is movement. A gentle breeze will move things around so it’s not static.” Such a peaceful space will appeal to those seeking respite — as well as draw the birds that are part of nature.
Plant picks for a 12-month garden Planting a seasonal Central New York garden means finding plants that provide interest throughout the year. This list – from Environmental Design & Research’s Diane Burkard, who designed the rooftop healing garden for the Upstate Cancer Center – includes spring bulbs, summer flowering perennials, fall blooming grasses and evergreens that provide backdrop for other plants during their growing season. Spring
Summer
Autumn
Winter
Anemone blanda (Windflower)
Geranium ‘Rozanne’ (Cranesbill)
Amsonia hibrichtii (Threadleaf Blue Star)
Juniperus sabina ‘Buffalo’ (Buffalo Savin Juniper)
Scilla siberica ‘Spring Beauty’ (Spring Beauty Wood Squill)
Rudbeckia fulgida ‘Goldsturm’ (Goldsturm Black-eyed Susan)
Bouteloua gracilis (Blue grama Grass)
Cornus stolonifera ‘Farrow’ (Arctic Fire Red Twig Dogwood)
Eranthis hyemalis (Winter Aconite)
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Hemerocallis ‘Pardon Me’ (Pardon Me Daylily) summer 2014
Panicum virgatum ‘Shenandoah’ (Shenandoah Switch Grass)
Betula nigra ‘Heritage’ (Heritage River Birch)
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Q: A:
LIVING WITH CANCER
I’m not depressed but I just want to be left alone. So what can I do about friends who keep trying to include me in their social plans? The first thing would be to tell them. You will likely have two types of friends. One who will feel so uncomfortable with your diagnosis that they will avoid you. Do not take this personally as this is about them, not you. However, you do have the right to tell them how it makes you feel.
The second group of friends will include those who will go out of their way to make certain you are OK and will invite you to everything and anything they can think of. They may be doing this to alleviate their own anxiety about you.
It is OK to tell your friends exactly what you need. Make certain that you are getting a good share of love and support, as that is crucial when going through the cancer experience. –ALIYA HAFEEZ, MD
Dr. Hafeez is an assistant professor of psychiatry and behavioral sciences and a breast cancer survivor. Reach her through Upstate Connect at 315-464-8668. Listen to an interview
with Hafeez by visiting upstate.edu/healthlinkonair and searching for “Hafeez.”
Rejuvenate with reading Sometimes you need a story that makes you laugh...
Preschool “Pete the Cat and His Four Groovy Buttons,” (2013) by James Dean and Eric Litwin. Pete the Cat is wearing his favorite shirt, the one with the four totally groovy buttons. When one falls off, does Pete cry? Goodness no! He just keeps on singing his song. Youth
“Fortunately the Milk,” (2013) by Neil Gaiman, illustrated by Skottie Young. A little boy and his little sister awake one morning, milkless. When father goes for milk, something goes wrong, and he doesn’t return. When he does, finally, he has a story to tell. There is time travel, treachery, adventure, and, fortunately, the milk he procured is rescued at every turn. Adult “Kids These Days,” (2014) by Drew Perry. The author paints a landscape of weird and beautiful Florida and its inhabitants, all original, hilarious, and utterly believable. At the center of the story is a portrait of a father-to-be who is paralyzed by the idea of taking responsibility for another human life when he can’t seem to manage his own.
FROM MARY LAVERTY
Sometimes you need a story that lets you cry... Preschool
“A Ball for Daisy,” (2011) by Chris Raschka. A wordless story about love and loss. Any child who has ever had a beloved toy break will relate to Daisy’s anguish when her favorite ball is destroyed by another dog. Youth
“Kepler’s Dream,” (2013) by Juliet Bell. When 11-year-old Ella’s mother has to be hospitalized for cancer treatment, Ella spends the summer at “Broken Family Camp” with her grandmother, whom she’s never met. The situation is hardly ideal. Ella is afraid her mother may die, but her grandmother seems to care more about her library full of books. Then a rare and beloved book is stolen from her grandmother’s library. A dynamic story of family and forgiveness. Adult “The Book Thief,” (2007) by Markus Zusak. This remarkable story is about the ability of books to feed the soul. The setting is 1939 Nazi Germany. Liesel Meminger is a foster child living outside of Munich who scratches out a meager existence for herself by stealing when she encounters something she can’t resist: books.
Mary Laverty is a librarian in the Family Resource Center of the Upstate Golisano Children’s Hospital. Reach the center at 315-464-4410.
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living witH c ancer
Garden Guacamole
Energy-boosting
Snacks can help maintain adequate blood sugar levels and prevent the feeling of energy depletion. If cancer or cancer treatment has reduced your appetite, consider replacing meals with small snacks every three or four hours. To get an extra protein boost, try mixing in a cup of cottage cheese. For an even simpler snack, just slightly mash an avocado with a bit of salsa and enjoy. If you don’t have salsa, a little salt will do. Ingredients 2 ripe avocados
1 clove garlic, passed through a garlic press
1 tablespoon fresh lime juice
1/2 teaspoon coarse salt
1 tablespoon cilantro, chopped
1/8 teaspoon freshly ground pepper
1/2 red onion, finely minced
1 ripe tomato, seeded and diced
t.J. Hine pHotograpHy, HinepHoto.com
Nutritional information, for each of six servings:
Preparation
1.
Cut the avocados in half, remove the pits and scoop the avocado into a mixing bowl.
2.
Mash the avocado, leaving it chunky. Add the remaining ingredients, except for the tomato, and mix until just combined. Don’t overmix.
3.
If not serving immediately, cover so that plastic wrap directly skims its surface. (The goal is to prevent oxidation, which causes guacamole to turn brown.) Refrigerate until ready to serve.
4.
Just before serving, add the tomato to the guacamole, and mix. Yields six servings.
calories, 104 fat, 8 grams saturated fat, 2 grams cholesterol, 0 milligrams sodium, 162 milligrams carbohydrate, 8 grams Dietary fiber, 5 grams protein, 2 grams
Recipe courtesy of “Cancer Nutrition & Recipes for Dummies,” by Maurie Markman, MD, Carolyn Lammersfeld, RD and Christina Torster Loguidice. Published in 2013 by John Wiley & Sons, Inc. Book is available at www.dummies.com
By the NUMBERS 1
17.4
sky light in the healing garden lets natural light into the first floor George E. and Caryl Lee Johnson Radiation Oncology Center.
million dollars were raised through the Foundation for Upstate — drawn from 18,449 gifts and pledges — to help build the $74-million Upstate Cancer Center.
140
villages,
towns or cities in New York have residents who receive cancer care at Upstate University Hospital.
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steps take you to the top of the Jim and Juli Boeheim Stairway of Hope from the cancer center lobby.
146
cassions secure the foundation, the deepest of which is 57.35 feet below the first floor.
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ADVICE FROM EXPERTS ADVICE FROM EXP
FAQ
with dentist Patrick Smith
Tooth decay can be a side effect of radiation for cancer treatment, because of a condition called dry mouth.
Does dry mouth go away once the cancer is gone?
Dentist Patrick Smith, assistant professor of surgery and residency program director of the dental service and clinic at Upstate, explains.
“Radiation really dries out the salivary glands, and that’s a long-term process. It is not something that you are going to recover from quickly. In fact, some patients never recover, which is why dentists need to see patients with new cancer diagnoses early.
What is going on? “Radiation of the head and neck, in particular, and some chemotherapy drugs can lead to xerostomia, or dry mouth, which is any condition in which the patient notes that their mouth is less moist than it used to be. They are just not producing saliva like they once did. “Why is that bad? Because any plaque or calculus (hardened plaque also called tartar) on the teeth will accelerate potential decay. In addition to helping wash away food particles, saliva actually helps with digestion and neutralizes acids produced by bacteria. So when saliva is reduced, it can lead to problems.”
How can decay be prevented? “Fluoride treatments, routine brushing, and accelerated dental checkups — maybe every fourth month instead of every six.”
Can dry mouth be treated? “There are medications that can be prescribed for severe cases, to stimulate saliva production, and you might want to try a prescription or over-the-counter rinse or moisturizer. “It may also help to sip water or suck ice chips throughout the day. And, avoid products – including caffeine, alcohol, tobacco and sugary foods – which make the situation worse.”
“When someone is diagnosed with cancer, it’s very important that they visit their dentist before they start treatment to determine if they have any particular areas of concern. Do they have a potential for abscess development? Do they have decay in their teeth? “If you don’t have a dentist, ask your oncology team for a referral. Here at Upstate we have the dental service, and we work closely with our oncology associates.”
SYMPTOMS OF DRY MOUTH
• • • • • • • • • • •
dryness in mouth, throat saliva that seems thick or stringy bad breath difficulty chewing, speaking, swallowing altered sense of taste burning sensation in the mouth problems wearing dentures more frequent tooth decay gum irritation, gum disease mouth sores or cracked lips dry, rough tongue
Sources: National Institute of Dental and Craniofacial Research, Mayo Clinic Reach University Dental Services at 315-464-5256.
PHOTO BY WILLIAM MUELLER
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Helping your loved one consume enough calories
ADVICE FROM EXPERTS
Cancer and its treatments can reduce a person’s appetite, putting him or her in danger of losing too much weight. Registered dietitian Maria Erdman says spreading meals into smaller servings of food throughout the day can help. So can eating slowly and chewing thoroughly, and limiting the amount of liquids during meals.
She coaches patients that their job is to eat well. And she lets loved ones know that this job is not easy. Encouragement should be gentle.
Add calories by adding: • Dry milk powder to whole milk, smoothies, casseroles, pasta sauce, mashed potatoes, egg and tuna salads, soups, cereals and homemade baked goods. This adds 16 calories per tablespoon. (Not recommended for children younger than 2 unless under the supervision of a physician or registered dietitian.) • Heavy cream to cereals, hot chocolate, puddings, smoothies, soups, sauces and casseroles. This adds 60 calories per tablespoon. • Granola to yogurt, ice cream, applesauce, oatmeal, pudding and dough when baking cookies. This adds about 110 calories per ounce, depending on the brand. • Wheat germ to baked goods, cereal, casseroles, pancake mixes or milkshakes, or as a topping on ice cream, yogurt or fruit. This adds 25 calories per tablespoon. • Cheese to breads, vegetables, pastas, potatoes, eggs, sandwiches, salads or soups. This adds 100 calories per ounce. • Cream cheese to celery, toast, sandwiches and dips. This adds 50 calories per tablespoon. • Olive, vegetable, canola or peanut oil to soups, sauces, casseroles, vegetables and gravies. This adds from 110 to 120 calories per tablespoon.
Other key points: Add protein – Greek yogurts, peanut butter, eggs, and any kind of nuts are good options to help maintain muscle mass. Nutrition density – Choose foods that contain nutrition over foods that don’t. Instead of consuming 200 calories of a donut, eat that many calories in guacamole, and you will fuel your body with more fiber than sugar, healthy fats in lieu of unhealthy fats, and less cholesterol.
• Hummus or mashed bean spread to sandwiches or as a dip for vegetables. This adds 17 calories per tablespoon. • Peanut butter to milkshakes, oatmeal and ice cream, or spread onto crackers, fruit or vegetables. This adds 100 calories per tablespoon. Erdman cautions that anyone who is losing weight rapidly needs to contact his or her healthcare provider.
Listen to this interview at upstate.edu/ healthlinkonair by searching for “Erdman”
How to manage cancer fatigue
Cancer and/or the side effects of its treatment leave more than 90 percent of patients overwhelmed by fatigue, so much so that everyday activities become a struggle.
strength training two to three times a week and moderate intensity cardiovascular exercise three to five days a week for 15 to 40 minutes, as tolerated and not to exhaustion.
As counterintuitive as it may sound, exercise may be the answer, says Cassi Terpening, a doctor of physical therapy who oversees Upstate’s Cancer Rehabilitation Program. “Moderate intensity exercise can decrease a person’s level of fatigue,” she says.
Terpening says most people feel better after exercising. They sleep better. Their pain is lessened. Their mood is boosted. And they function better. “It doesn’t happen immediately, but when they see that change, I think it has a positive effect.”
The type and duration of exercise is dictated by the person’s previous activity level and his or her goals. Walking, gentle biking, swimming and light strengthening moves are typical. The American College of Sports Medicine recommends
Join the Cancer Rehabilitation Program with a doctor’s referral by calling 315-464-6543. Physical therapy is offered at offices in East Syracuse, Manlius and Syracuse.
Listen to this interview at upstate.edu/healthlinkonair by searching for “cancer fatigue.”
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MAKING A DIFFERENCE
PHOTO BY ZANETTE HOWE
The dance floor was packed at National Cancer Survivors Day, which drew 460 cancer survivors and their guests to a lunch buffet, music and door prizes. The annual event, sponsored by Upstate, featured a safari theme this year.
Raising spirits, awareness and funds
● The Central New York community made the Upstate Cancer Center
possible, with many donations coming directly from grateful patients and family members. The Foundation for Upstate Medical University was the hub for the philanthropy which drew the support of thousands of people. The four-year fundraising effort brought in $17.4 million for the center. ● Toni Gary, a development director at the foundation, says more than
325 individual children and school groups made donations. Student and community groups sponsored efforts that included a fishing fundraiser that brought in $450 in May and a basketball fundraiser in April that brought in $4,200. The Phoenix High School Lady Firebirds varsity pitcher, Megan Brown, raised $2,000 over 20 games by securing pledges for strikeouts. A Liverpool Middle School teachers’ basketball game held in March raised $1,600. A wrestling tournament in January at Skaneateles High School raised $1,300. ● A $32,000 gift from the Alive! Foundation will help support the new
PHOTO BY DICK BLUME | SYRACUSE.COM
Paige’s Butterfly Run attracted more than 2,500 participants this June for its 5K race, 3K fun run/walk and Caterpillar Crawl for kids in downtown Syracuse. The event has raised more than $2 million over the past 18 years to benefit pediatric research and cancer care. The money is also used to provide patients and families with “comfort kits,” gift cards for food and gas to those traveling far and other amenities to help meet the needs of a life that has suddenly been turned upside down.
therapeutic music program in the Upstate Cancer Center. The money was raised through the foundation’s Ride for Alive!, an annual cycling event in Skaneateles. “We are committed to helping cancer survivors live well,” says Julia Wamp, co-founder of the Alive! Foundation. Wamp, a cancer survivor, and her husband Michael established the foundation in 2012 to educate and empower survivors to live healthier, happier lives. ● A Fulton teacher, Danielle Delfanian, has raised more than $5,000 since
2011 by making duct tape rose pens, wallets, hair clips and bracelets through her organization, Roses for Breast Cancer, at www.rosesforbc.org ● Upstate had a presence at breast cancer walks and runs, including
the American Cancer Society’s Making Strides Against Breast Cancer; the Carol M. Baldwin Breast Cancer Research Fund’s A Run For Their Lives; and the Susan G. Komen Race for the Cure. A new grant from Komen will help underserved women secure their mammograms.
PHOTO BY DOUG ROSENTHAL
● The 12th annual Father-Daughter Valentine Ball, held this year at the
Empire Room of the New York State fairgrounds, raised $30,832 to benefit pediatric cancer services at Upstate. ● Upstate students and employees snacking at Deb’s Grill collected
$1,185.25 in spare change to benefit the cancer center. Learn about the Foundation for Upstate at foundationforupstate.org or by calling 315-464-4416. Find a calendar of Upstate events at upstate.edu/calendar
More than 175 players on 17 teams played in the Kick Cancer Kickball Tournament in May. They raised more than $2,400 this year, bringing the three-year total amount of money they have donated to the Upstate Cancer Center to more than $6,000. Doug Rosenthal, who works in Information Management and Technology at Upstate, helps to organize the event, which takes place at the Syracuse Kickball Park in Liverpool.
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3 ways advocacy can help end cancer
MAKING A DIFFERENCE
“We can finish the fight against cancer in this century if we do the right things,” John Seffrin, PhD, chief executive officer of the American Cancer Society, said during a trip to Syracuse. He spoke at Upstate Medical University’s graduate and medical school graduations this spring. Two out of three Americans who develop cancer survive on a long-term basis. To increase survivorship, Seffrin says advocacy is key. He says people need to speak to lawmakers and community leaders with these three messages: ● we need more money for research, ● we need to ensure that people are protected from second-hand smoke, and ● we need to make sure that if someone has cancer, he or she gets the care needed.
John Seffrin, PhD, CEO of the American Cancer Society, toured the cancer center construction with medical director Leslie Kohman, MD. PHOTO BY RICHARD WHELSKY
Listen to this interview by visiting www.upstate.edu/ healthlinkonair and typing “Seffrin” in the search box.
“That’s why the new Upstate Cancer Center is so important,” Seffrin says. “It is not hyperbole to say when the cancer center opens, more lives are going to be saved. People will not die who otherwise would die if they did not have access to that facility. People will have access to some of the latest technology and some of the greatest scientists and clinicians available in the world.” The American Cancer Society celebrated its 100th anniversary last year. Seffrin said his dream is to finish the cancer fight in this century. He said 400 more lives are saved from cancer per day now than were saved in 1991, but he believes we can save 1,000 lives a day by increasing research, implementing public policies and improving access to medical care. “That would be a public health victory, the likes of which the world has never seen.”
Science + people = rewarding career in genetic counseling In recognition of her work with patients, genetic counselor Bonnie R. Braddock received the Humanitarian Award from the Carol M. Baldwin Breast Cancer Research Fund of CNY this spring at the organization’s annual gala.
“It was a great mix for me because it deals with the science of genetics but also, you talk to people.”
Braddock has been at Upstate since 1997. She is a native of DeWitt who returned to Central New York after starting her career in Los Angeles and then working in the Boston area. She was a biology major who took a course in genetics “and just loved it,” she says.
“Before we even think about genetic testing, the question is, could there be a hereditary risk factor? The great majority of cancers are not hereditary,” she says, “but certainly there are families where there is a hereditary gene.”
Most of the people Braddock talks to have concerns about cancer. They come to consider genetic testing.
There’s a difference between genetics and heredity. Genetics refers to some kind of change in a gene, and most changes that are tied to cancers are sporadic. Not all diseases that are genetic are hereditary, or passed from parent to child. The field of genetics is changing so rapidly that Braddock is constantly learning of advances. “It’s so cool to see how far we’ve come from where we were even 10 years ago. We are able to do things now that we weren’t routinely offering a year ago.” Braddock says she is grateful for the honor from the Baldwin foundation and for the research the group continues to fund at Upstate. Bonnie Braddock, right, receives the Baldwin Award from Jacqueline Baldwin-Calveric at the Carol M. Baldwin Gala on May 10.
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PHOTO BY SUSAN KAHN
w w w. u p s t a t e . e d u / c a n c e r
SEARCHING FOR CURES
Which surgery provides best long-term outcome?
Kidney cancer
Used to be, when surgery was recommended for kidney cancer, surgeons would remove an entire kidney. Now research shows patients fare better 10 years after surgery if the operation removes just the tumors.
It makes for a trickier operation, but the kidney-sparing surgery gives patients a decreased risk of developing chronic kidney disease, according to an Upstate study published recently in the journal, Urologic Oncology. Urology resident Michael Daugherty, MD, and his mentor, Gennady Bratslavsky, MD, analyzed a national database, concentrating on people between the ages of 20 and 44 who underwent surgery for small, localized kidney tumors. “We looked at these younger patients because we wanted to see what effects the surgery itself would have on the patient and his or her long-term outcomes. With the younger patients, they were assumed to have less underlying diseases, less chance of having hypertension or heart disease or things that would possibly cause them to have an earlier death.” They compared cancer-specific survival and overall survival between those who had a kidney removed and those who just had the tumors removed. They found no difference in cancer-specific survival, “which means the surgical removal got rid of the cancer in both ways equally,” he says. In overall survival, however, “those treated with the entire removal of the kidney did worse at 10 years. Those who had the nephron-sparing surgery did better in the long term.” Not all kidney cancers are treated with surgery. Many factors, including the type of cells involved, help doctors decide what to recommend. “These cancers may be very different in their sizes, their behaviors and their prognoses,” says Bratslavsky, who leads the department of urology at Upstate.
children through a defective gene. Some are not. Some are discovered incidentally, when a patient has a medical image for another reason, and a tumor is revealed on a kidney. Many are discovered only after a patient notices blood in his or her urine.
Gennady Bratslavsky, MD
“Unfortunately when patients present with symptoms, the disease may be much more advanced,” says Bratslavsky. Upstate physicians offer methods of destroying tumors without traditional surgery, and newer treatments that tap into the body’s own immune system to destroy cancer cells. “Active surveillance” is another important option when tumors that are slow growing or for patients for whom surgery would be too risky. Most of the surgeries for kidney cancer at Upstate are done laparoscopically, through tiny incisions, using robotic assistance. No matter which type of cancer is diagnosed, Bratslavsky says, “it’s very important that patients with kidney tumors are managed in a setting where they can be provided with a multidisciplinary approach, such as at Upstate.” Radiologists, pathologists, medical oncologists, urologists and others come together in one room to discuss a particular patient’s options. This is where the question is asked, and answered: Which treatment, which surgery offers the patient the best outcome? Listen to this interview at upstate.edu/healthlinkonair by searching for “kidney cancer.” Contact the Department of Adult Urology at 315-464-1500.
Clinical trial: lung cancer Some kidney cancers are hereditary, passed from parents to
Radiation therapy uses high-energy x-rays to kill tumor cells. Drugs used in chemotherapy work in different ways to stop the growth of tumor cells, either by killing the cells or by stopping them from dividing. Which radiation therapy regimen is more effective when given together with chemotherapy to treat patients with limited-stage small cell lung cancer? Dr. Jeffrey Bogart, professor and chair of radiation oncology, is trying to answer that question. He is the national study chair of a clinical trial sponsored by the National Cancer Institute that compares survival times between two different chest radiation therapy regimens. About 15 percent of lung cancers are small cell cancers. At the time of diagnosis, about a third of people Jeffrey Bogart, MD with small cell lung cancer are classified as limited stage because the tumors have not spread beyond their lungs. Chemotherapy and radiotherapy may both be effective in treating small cell lung cancer. The National Cancer Institute reports that combination therapy — such as being offered in this study — has been shown to improve long-term survival in some patients. Learn about this and other clinical trials taking place at Upstate at www.upstate.edu/hospital/clinical_trials/ Click on “active clinical trials” in the left column. Choose the “cancer” category and then press “search.” Reach Bogart at 315-464-5274.
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750 East Adams Street l Syracuse, NY 13210
Targeting tumors with precision
UPClose
Upstate is one of only three institutions in the United States to offer the Vero, a 9-ton ring of sophisticated cancer weaponry that allows radiation oncologists to pinpoint tumors and deliver radiation with unprecedented precision.
How it works
The patient lies on the treatment “couch.” After he or she is positioned, the Vero moves freely around the patient. With its unique pivoting head, the machine moves as necessary to provide unrestricted access to the tumor from nearly any angle.The advanced imaging technology built into the Vero shows a 3D view of tumors and organs. The technology allows tumors — even those that move or shrink — to be located, targeted and then treated in real time. The Vero can be used for many types of tumors and may be used on tumors that have spread and for those that are hard to reach surgically. Once the tumor is identified, the Vero’s precise delivery of radiation is achieved through several beams at different angles and intensities — all directed at the tumor. This means that radiation is concentrated on the tumor and less so on surrounding healthy cells and tissues. The customized treatment provides hope for greater cure rates and fewer side effects. The Vero is housed in a specially constructed space in the new Upstate Cancer Center. Its addition complements existing technology to provide the greatest breadth of treatment options in the region.