Download 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
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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 [email protected]
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 [email protected].
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 [email protected].
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 [email protected] 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.”