Be My Guest, and Let Us Do the Rest!
Transcription
Be My Guest, and Let Us Do the Rest!
CANCER RPCI CANCER TALK BLOG & eNEWSLETTER For straight talk from RPCI experts and survivors, visit our blog to read patient-focused news you can use about cancer detection, prevention, research and treatment. Read inspiring stories and learn about the latest therapies, tips for living with cancer and much more. Visit RoswellPark.org/CancerTalk. SEPTEMBER/OCTOBER 2015 alk CancerT ark.org/ llP e sw o R Don’t forget to sign up for our monthly e-newsletter that highlights our most popular posts from the CancerTalk blog. Sign up at: RoswellPark.org/cancertalk/sign-up. SEPTEMBER IS THYROID CANCER AWARENESS MONTH Thyroid Cancer: Quick Facts WHAT IS THE THYROID GLAND? The butterfly-shaped thyroid gland hugs the front of your trachea (windpipe) just below your voice box. It pulls iodine from the food you eat and turns it into hormones that control your blood pressure, body temperature, weight, energy levels, calcium levels, and other important processes. THYROID CANCER IS THE MOST RAPIDLY INCREASING CANCER IN THE U.S. THE RISING NUMBER OF CASES IS DUE PARTLY TO THE FACT THAT WE HAVE BETTER METHODS OF DETECTING IT, BUT RESEARCHERS HAVEN’T YET PINPOINTED OTHER REASONS FOR THE INCREASE. IN FACT, WE DON’T KNOW EXACTLY WHAT CAUSES MOST THYROID CANCERS. FORTUNATELY, MOST OF THE TIME THEY CAN BE TREATED EFFECTIVELY. WHO IS MOST LIKELY TO GET THYROID CANCER? WHAT ARE THE SYMPTOMS OF THYROID CANCER? • P eople between the ages of 25-65 • A lump in the neck • F emales (3x the risk of males) • Trouble breathing or swallowing • P eople who received radiation treatments to the head and neck during childhood, or those exposed to radiation from a nuclear accident or atomic bomb • H oarseness or unexplained cough • P eople with a history of an enlarged thyroid (goiter) • P eople with a family history of thyroid disease or thyroid cancer • P eople with specific inherited gene mutations • P eople of Asian descent ARE THYROID NODULES THE SAME AS THYROID CANCER? Thyroid nodules are clumps of cells on the thyroid gland. Most are not cancerous and shouldn’t be cause for worry. (Usually they don’t cause symptoms and are first discovered during a physical exam.) But if they interfere with your breathing or swallowing, or if they grow rapidly, see an endocrinologist (a doctor specializing in diseases related to the glands), advises Moshim Kukar, MD, of RPCI’s Department of Surgical Oncology. Dr. Kukar says the endocrinologist may recommend regular monitoring with ultrasound or a biopsy, to help detect any nodules that harbor cancer or become cancerous in the future. DOES MEDULLARY THYROID CANCER RUN IN YOUR FAMILY? There are four kinds of thyroid cancer: papillary, follicular, anaplastic, and medullary. Medullary thyroid cancer spreads very quickly, and once it has moved beyond the thyroid gland, it is very difficult to treat. About a third of all cases of medullary thyroid cancer are inherited, or passed down from one generation to another, as a result of a gene mutation. If you have had medullary thyroid cancer, or several of your relatives have had it, your family could have an inherited susceptibility, which could increase the risk of medullary cancer in relatives who are affected. To find out whether you and your family could benefit from genetic counseling and testing for this or other genetic risk factors, call RPCI’s Cancer Information Program at 1-877-ASK-RPCI (1-877275-7724). An information specialist will complete a brief questionnaire with you over the phone, and you will be contacted later about an appointment. Learn more about nationally recognized awareness months for a number of causes that impact the lives of Roswell Park patients and their loved ones. Visit roswellpark.org/awareness Stay Connected: Questions? Comments? Contact 1-877-ASK-RPCI or askrpci@roswellpark.org 29205 “Be My Guest, and Let Us Do the Rest!” That familiar invitation from restaurateur Russell Salvatore, heard in TV ads for Russell’s Steaks, Chops & More, has taken on new meaning for inpatients at Roswell Park Cancer Institute (RPCI). Patients will no longer pay for TV access during a hospital stay, thanks to a generous $400,000 donation to RPCI from Salvatore. Previously RPCI inpatients paid $8 per day for TV service, up to a maximum of $80 per month. Kara Eaton-Weaver, Executive Director, Patient/Family Experience, says Roswell Park “is incredibly grateful to Mr. Salvatore for this donation. This gift provides patients with a much-needed distraction and helps relieve the financial burden they are already carrying as they undergo cancer treatment.” “Patients at Roswell Park are dealing with enough by battling this terrible disease,” says Salvatore. “I feel fortunate that I am able to help them in some way, and I hope this gift will give them one less thing they have to think about.” Among many other community contributions, Salvatore has funded the New Year’s Eve ball drop for First Night Buffalo, the Fourth of July fireworks at Canalside, and construction of a brand-new Boys and Girls Club in Depew after the original building was destroyed by fire. He established scholarships for students at Trocaire College, made the lead gift to build a new field house at Lancaster High School, and provides significant support for Women and Children’s Hospital, the Food Bank of Western New York, the Make-a-Wish Foundation, and numerous other organizations that assist people in this region. Salvatore grew up in Buffalo and got started in his career by working in a restaurant owned by his parents, who came to the United States from Italy. He later purchased and ran a hot dog stand before founding Salvatore’s Italian Gardens, Russell’s, and Salvatore’s Grand Hotel on Transit Road in Lancaster. “We put a tremendous value on quality of life here at Roswell Park,” says RPCI President and CEO Candace Johnson, PhD. “This gift will give our patients some comfort and allow them to feel a little more at home.” The Kelly Family & Dr. Khurshid Guru Will Shine at Roswell Park’s All Star Night PATIENT EDUCATION NOTES This year’s Katherine Anne Gioia Inspiration Award will be presented to former Buffalo Bill Jim Kelly, a survivor of head & neck cancer; his wife, Jill; and their two daughters, Erin and Camryn, at Roswell Park’s 25th anniversary All Star Night, Saturday, Nov. 7, at the Buffalo Niagara Convention Center. The Kellys will be recognized for their role as advocates for cancer patients, and for inspiring donors and volunteers to join the fight against cancer. The Affordable Care Act & You Khurshid Guru, MD, Director of Robotic Surgery at Roswell Park, will be honored with the Thomas B. Tomasi, MD, PhD, Hope Award for bringing hope to cancer patients through significant advancements in cancer research. WHAT CANCER PATIENTS NEED TO KNOW The Kelly family: Jill and Jim (seated) with daughters Erin and Camryn The annual black-tie gala supports cancer research and patient-care programs. This year’s retro aviation theme will recall the Pan Am era – the Golden Age of travel. Ticket information and other details at AllStarNight.org. New Prescription? Time for a Refill? Visit RPCI’s Outpatient Pharmacy Depending on your insurance plan, you may be able to have your prescriptions filled right here at Roswell Park’s new outpatient pharmacy. Pick them up in person or ask for free delivery. To find out if you’re eligible, call 716-845-8999 or email RoswellParkPharmacy@roswellpark. org. For location, hours, and other details, visit roswellpark.org/pharmacy. Join Us for Oktoberfest in Kaminski Park Put on your lederhosen and get ready for Oktoberfest in RPCI’s Kaminski Park & Gardens on Friday, Sept. 18, from 5-10 p.m. The event raises funds to provide safe, comfortable lodging at Kevin Guest House (KGH) for out-of-town patients and families who come to Buffalo for medical care at Roswell Park and other hospitals. (KGH was the first medical hospitality house in the nation and the model for the Ronald McDonald houses!) Visit kevinguesthouse.org for ticket information and other details. Danke schoën! Dr. Guru, left, talks with a patient in the Urology Clinic. COMPARISON SHOPPING – COSTS & COVERAGE Join Team Roswell for 2 Fall Breast Cancer Walks Bosom Buddies SATURDAY, SEPTEMBER 12 Making Strides of Buffalo SATURDAY, OCTOBER 17 WHERE: Healthy Zone Rink, East Aurora WHERE: Canalside, Buffalo SUPPORTS: Breast cancer research at RPCI & the Western New York Breast Resource Center at RPCI SUPPORTS: American Cancer Society, to fund breast cancer research, prevention, and support for patients DETAILS: bosombuddieswalk.org DETAILS: Makingstrides.acsevents.org (Under Find an Event, enter zip code 14202.) Classic Cars, Trucks & Motorcycles on Display at the 5th Annual Cruisin’ for a Cure Check out the wheel candy on display at RPCI during the 5th Annual Cruisin’ for a Cure on Saturday, Sept. 26, from 9 a.m.4 p.m. The event also features a DJ, food vendors, door prizes and raffles, and goody bags. Free prostate cancer education and screening will be offered from 11 a.m.-2 p.m. for men 40 or older. African-American men and those with a family history of prostate cancer are especially encouraged to attend to learn more. To pre-register for screening, call 1-877-ASK-RPCI (1-877-275-7724) or email askrpci@RoswellPark.org. Cruisin’ for a Cure is presented by West Herr Automotive Group, in conjunction with Men Allied for the Need to Understand Prostate Cancer (MANUP) and RPCI. For details, contact Terry Alford at 716-845-4557 or terry.alford@roswellpark.org. One Mission delivers news, information, and stories of hope and inspiration to the patients and families served by Roswell Park Cancer Institute (RPCI), in keeping with RPCI’s mission to understand, prevent, and cure cancer. This patient newsletter is written, created and designed by RPCI’s Department of Marketing, Planning, Public Affairs and Customer Relationship Management, with content contributed by various departments at RPCI. Questions? Suggestions? The Affordable Care Act (ACA) has brought some relief for people living with cancer: Insurance companies can no longer deny coverage if you have a pre-existing condition, and there are no more yearly and lifetime caps on coverage. If you’re shopping around for health insurance, here’s what you need to know. Email RPCInews@roswellpark.org or write to: Public Affairs Office, Roswell Park Cancer Institute, Elm & Carlton Streets, Buffalo, NY 14263. The ACA requires that all Americans have a minimum level of health insurance coverage; those who don’t must either get an exemption or pay a penalty. Funds are available to help low- or middle-income families with the cost (premiums), and New York State residents can purchase a plan through the New York State of Health marketplace. (See details in the circle at right.) Marketplace plans are divided into four tiers: platinum, gold, silver, and bronze. Gold and platinum plans are similar to plans offered through employers. While bronze and silver plans cost less to purchase (lower premiums), they may come with a high deductible (the amount you must pay out of pocket for covered services before your insurance begins to pay). READY TO SHOP? Visit the New York State of Health plan marketplace: nystateofhealth.ny.gov. Enrollment for 2016 coverage is open from Nov. 2015 through Jan. 2016. For more information, call 855-355-5777. When shopping for a health plan, find out whether you’ll have to pay out of pocket to cover part of the cost of medications, and whether drug costs are subject to a deductible. For each plan, estimate your out-of-pocket costs and look up the out-of-pocket maximum — the most you must pay each year before your plan begins to pay 100% of the (covered) costs. With a platinum plan, typically the insurer pays 90% of benefits and you pay the other 10%; with gold, the split is 80/20%; silver, 70/30%; and bronze, 60/40%. PLANS, NETWORKS & MEDICATIONS HMOs and PPOs are two common types of managed care plans. Both use networks (healthcare centers or providers that provide services at lower rates for patients covered by the plan), but there are differences. You have less choice with HMOs — for example, you must use in-network providers and cannot see a specialist without a referral from your primary care provider — but they are also less expensive than a PPO, with lower premiums and deductibles. If you have a specific doctor or hospital you want to use, check the plan to see if they are part of the health plan’s network. Insurers must provide you with list of in-network providers. Find out whether you have to pay a percentage of drug costs (co-pay/co-insurance), and if the drug costs are subject to a deductible. This is important, because cancer medications can cost hundreds or thousands of dollars per month. PROPOSED LEGISLATION WOULD BENEFIT CANCER PATIENTS In June, Congress introduced the Cancer Treatment Parity Act of 2015. The Act would require plans that cover IV chemotherapy to provide equal coverage for oral chemo drugs and make out-of-pocket costs similar for both types of therapies. Contact your federal legislators if you want to help get this bill passed. Information on this page is provided by Roswell Park’s Patient Education Department. Questions or comments? Please call 716-845-8784. THE PAT I E NT EXP ERIENCE FREE SERVICES YOU MAY NOT KNOW ABOUT RPCI’S PURPLE SHIRTS HAVE ALL THE INFO Treatment-related hair loss? The ACS Look Good Feel Better program can show you how to create eyebrows and style a wig. Get details from a cancer resource volunteer. A cancer diagnosis is the beginning of a journey. Roswell Park’s Office of the Patient & Family Experience understands this, and we work hard so you and your loved ones will have the tools and resources you need to handle issues that may come up along the way. RPCI provides many of those programs and services, and we also team up with the American Cancer Society (ACS) to offer even more. Fun with art! Ask a cancer resource volunteer how to get started. Earlier this year, cancer resource volunteers began visiting outpatient clinics to let our patients know what’s available. (You’ll recognize these volunteers by their lavender button-down shirts with the Roswell Park logo.) All of them are survivors or caregivers themselves, so they’re familiar with many of the things you’re experiencing. For thousands of years, humans rose with the sun and slept when it grew dark, with only the moon and stars or perhaps a fire to light the night. Waking and sleeping followed a natural 24-hour cycle called the circadian rhythm, which controls many physical processes in plants and animals. In humans, circadian rhythm affects body temperature, blood pressure, kidney function, and the circulation of hormones, among many other functions. They’ll ask you a few brief questions to help identify programs you might need or be interested in — including some you may not even know about. In addition to such popular services as patient navigation, 24/7 medical interpretation (in more than 170 languages!), and travel assistance, they can point you in the right direction for assistance in managing legal/ financial issues, finding area lodging, requesting pastoral care, and getting in touch with support groups. Time for a makeover? Ask about the ACS Look Good Feel Better program, which can show you how to deal with appearance-related side effects. Ready to develop your hidden talents? Discover RPCI’s art and music therapy activities. Cancer resource volunteers visit clinics regularly throughout the week. Don’t worry — they’re not selling anything. Everything they offer is free of charge and available to all RPCI patients, and no need is too big, too small, or too unusual to get their attention. If you don’t see a “purple shirt,” ask a staff member how to reach one, or call 1-877-ASK-RPCI (1-877-2757724) or visit roswellpark.org for assistance. Thank you for choosing Roswell Park for your care! Nothing is more important to us than meeting your needs, both physical and emotional. Our cancer resource volunteers are here to make sure that happens. Coordinating Cancer Treatment with Your Inner Clock Confused and overwhelmed? Jennifer McCabe and other RPCI patient navigators can help you sort things out. A cancer resource volunteer can tell you how. Information on this page is provided by Roswell Park’s Office of the Patient/Family Experience. Questions or comments? Please call 716-845-8114. It can also affect the body’s response to cancer treatments, says Marina Antoch, PhD, of the Department of Pharmacology and Therapeutics. Dr. Antoch is a specialist in the relatively new field of chronobiology. (Chrono comes from the Greek word kronos, meaning “time.”) Dr. Antoch and other scientists in the field are working to “find a way to use circadian rhythm to our benefit,” she says. In the ’80s and ’90s, some clinical trials showed that chronotherapy — giving cancer medications at specific times of day that coordinate with circadian rhythm — led to better results. But that method is not practical, she explains, “because those times Darkness & Sleep: WHY YOU NEED BOTH Dr. Marina Antoch, right, in the lab with Arani Datta. could fall in the middle of the night.” While chronotherapy pumps have been invented to deliver medications automatically at any hour, they are bulky and too expensive, she adds. So Dr. Antoch and her RPCI team are exploring a different strategy. Their goal: to develop medications that can “reset the body clock” to a time when a patient’s cancer treatment will work best and cause fewer side effects. She and her colleagues are working to “find a way to use this system to our benefit. We are at the stage where we have some tools, some targets, and we can start applying what we know to practical applications.” Learn more about the health impacts of circadian rhythms: www.nigms.nih.gov/ Education/Pages/Factsheet_ CircadianRhythms.aspx A little more than a century ago, electricity began making it easier to stay awake and active throughout the night. Today, lights, TVs, smartphones and computers expose us to unnaturally long periods of light and often keep us from getting a good night’s sleep. That’s a problem, because sleep is essential for our bodies to function properly. We’re just beginning to recognize how health can be affected when the natural cycle of light and darkness gets out of whack. Studies have shown that women who work the night shift for many years are more likely than other women to develop breast cancer, for example. Disruption of the natural circadian rhythm has also been linked to sleeplessness, obesity, diabetes, mental illness — including depression — and other serious medical conditions. So turn out the lights, pull down the shades, and get a good night’s sleep! I look forward to expanding LCC’s relationship with Roswell Park, which has the potential to make a great impact throughout West Africa. What Happens When Pregnancy & Cancer Collide? – Dr. Nwogu Crossing Borders: RPCI TEAMS UP WITH CANCER CENTER IN AFRICA TO DELIVER SPECIALIZED CARE FOR NIGERIANS Although Nigeria has 179 million people, until a few months ago, its citizens didn’t have access to a single dedicated cancer center. That’s why the numbers are not surprising: • N igeria ranks fifth worldwide in deaths from cervical cancer, which is almost entirely preventable with regular Pap tests. • B etween 80% to 85% of Nigerian breast cancer patients get their diagnosis when the disease is advanced and difficult to treat successfully. • N igerian men are 3.5 times more likely than African-American men to die of prostate cancer. Now America’s oldest cancer center has teamed up with one of the world’s newest to make cancer prevention, screening, and care more accessible to the people of Nigeria. Physicians from Roswell Park Cancer Institute (RPCI) are assisting their colleagues at Lakeshore Cancer Center (LCC) in Lagos, which opened earlier this year, by reviewing patient cases and treatment plans. In addition, LCC physicians can participate in specialized training at RPCI and attend professional education seminars through teleconferencing. Chukwumere “Chumy” Nwogu, MD, PhD, Interim Chair of Thoracic Surgery at RPCI and the founder of LCC, says the RPCI/LCC partnership will fill a huge need for specialized cancer care in Nigeria and West Africa. The Nigerian-born surgeon serves as LCC’s CEO and Medical Director. By focusing on research, prevention, and advanced treatment, he aims to completely transform cancer care in his home country. LCC provides diagnostic imaging services, mammography, Pap tests & colposcopy, lab services, tissue biopsy, outpatient surgery, chemotherapy, palliative care, public education, and the coordination of additional medical services both within and outside of Nigeria. LCC is the launching pad for all the work ahead. Dr. Nwogu also hopes to reach out to Nigerians who don’t live close enough to take advantage of the center’s services. He envisions a mobile mammography unit that can travel to communities all over Nigeria to screen women for breast cancer. If it’s detected early, he says, “you can cure the person with surgery. The surgery is available in Nigeria, but if detection doesn’t take place until the cancer has spread, treatment is a lot more challenging.” Dr. Nwogu and his colleagues also want to improve cancer care in other regions of West Africa. With a National Cancer Institute grant of nearly $200,000, Dr. Nwogu and Alex A. Adjei, MD, PhD, RPCI’s Senior Vice President of Clinical Research and the Katherine Anne Gioia Chair of Medicine, are working to create partnerships with Lagos State University in Nigeria and Noguchi Memorial Institute in Dr. Adjei’s home country, Ghana. Because breast cancer and prostate cancer seem to behave in similar ways in both Africans and African-Americans, it’s hoped that information from collaborative research will lead to more effective treatments for those diseases. “There are great opportunities,” says Dr. Nwogu. “I look forward to expanding LCC’s relationship with Roswell Park, which has the potential to make a great impact throughout West Africa.” Annette Hill got wonderful news in early May of 2014 when she learned she was pregnant. But toward the end of the month, she got hit with a very different kind of news: she also had stage III breast cancer. “My heart stopped. I lost my breath. I didn’t know what to do,” says Hill, who is a clinical laboratory technologist in Roswell Park’s Pathology Department. “I thought, I don’t want to die. My thoughts immediately went to my two other children, who at the time were five and three.” Shicha Kumar, MD, FACS, Interim Chief of Breast Surgery at RPCI, and Ellis Levine, MD, with the Department of Medicine, helped relieve Hill’s anxiety and worked with her to develop a plan aimed at treating the cancer successfully while protecting the unborn baby. In patients who are not pregnant, breast cancer is typically treated with surgery, radiation, and chemotherapy. But because radiation could harm Hill’s baby, that part would have to wait until after the delivery. In the meantime, Dr. Kumar performed the surgery to remove the tumor. Then came 16 weeks of chemotherapy. For this part of the treatment plan, timing was critical. “You cannot treat a woman safely with chemotherapy during the first three months of pregnancy, when a lot of the baby’s organs are developing,” explains Dr. Levine. “But once most of the development has occurred and the baby is just in a growth phase, you can give chemotherapy — with certain drugs — during the last six months.” The three drugs Hill received “have been around for many years,” he adds. Babies whose mothers receive those drugs while pregnant “usually do well, and the rates of birth defects are no greater than they are for other babies. Fortunately, they are also the three most active drugs in breast cancer.” My heart stopped. I lost my breath. I didn’t know what to do. – Annette Hill Dr. Levine says Roswell Park treats between two and four pregnant cancer patients every year, and in every case the team works closely with an obstetrician who handles high-risk pregnancies. “Usually the woman is seeing not only us but her obstetrician at the same time, and we’re coordinating her care.” Looking back, Hill doesn’t pull any punches. Chemotherapy “was rough,” she says. Between the side effects and morning sickness, “I couldn’t keep anything down, and I lost 30 pounds.” Fortunately, her mother was there. “Even though I couldn’t eat, my mom would still make sure I had something in front of me.” Thanks to the love and support of her family, Hill completed her chemotherapy treatments on schedule. Just one week later, on Nov. 12, 2014, Kara Michelle was born, weighing in at a respectable four pounds, eight ounces. “She’s absolutely fine,” says her proud mom. “She has no health issues.” Hill laughs when she remembers seeing her baby for the first time. “I was bald, but she had all this hair.”
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