Huntsman Cancer Institute booklet - HCI

Welcome
to
HUNTSMAN CANCER
INSTITUTE
Important Information to Help
with Your First Appointment
Produced February 2016 - Review Date February 2019
Huntsman Cancer Institute • www.huntsmancancer.org
OUTPATIENT CLINICS
Monday through Friday, 8 a.m.–5 p.m.
801-585-0100
Toll free: 1-866-275-0243
HOSPITAL
24 hours daily, 365 days a year
801-587-7000
Toll free: 1-800-824-2073
PHARMACY
Monday through Friday, 8 a.m.–6 p.m.
Saturday, 9 a.m.−3 p.m.
Closed Sundays and Major Holidays
801-585-0172
Toll free: 1-877-724-9291
WELLNESS AND INTEGRATIVE
HEALTH CENTER
1st floor of the cancer hospital
801-587-4585
www.huntsmancancer.org/wellnesscenter
TABLE OF CONTENTS
About Us.........................................................................................................2
Thank You for Choosing HCI..........................................................................2
Preparing for Your First Visit...........................................................................3
Communicating with Your Health Care Team................................................. 4
What Should I Ask?.......................................................................................5
Teamwork for Safe Care.................................................................................5
The Multidisciplinary Care Team.................................................................... 6
What Are Clinical Trials?................................................................................ 7
What Is Cancer?.........................................................................................8
How Is Cancer Treated?.................................................................................9
Services for Our Patients and Caregivers......................................................10
Driving Map....................................................................................................12
1
ABOUT US
Our mission is to understand cancer
from its beginnings, to use that knowledge
in the creation and improvement of cancer
treatments, to relieve the suffering of cancer
patients, and to provide education about
cancer risk, prevention, and care.
Huntsman Cancer Institute (HCI) is part of University of
Utah Health Care. Every year, HCI serves thousands of
cancer patients from Utah and the surrounding states. HCI
also teaches and trains future doctors, nurses, and scientists.
HCI is the only National Cancer Institute-Designated
Cancer Center in the Intermountain West. This means it
meets the highest national standards for cancer care and
research and receives support for its scientific endeavors.
HCI is also a member of the National Comprehensive
Cancer Network (NCCN), a not-for-profit alliance of
the world’s leading cancer centers. NCCN is dedicated to
improving the quality and effectiveness of care provided to
patients with cancer.
THANK YOU FOR CHOOSING HCI
We work hard to make sure you have an exceptional
experience with the best possible results. We listen and
respond to what you and other patients tell us.
Our staff and management appreciate
HCI partners with Press-Ganey, a leading company that
specializes in improving health care quality. While you are
an HCI patient, you may receive an electronic survey from
Press-Ganey. The survey will ask about your experiences
with our staff and our building. Your responses will help
HCI make your experience the best it can be.
knowing your concerns. They strive to
respond quickly. To share your comments,
please call our Customer Service Manager:
801-587-4016.
2
PREPARING FOR YOUR FIRST VISIT
You may wonder what to expect during your first
appointment at Huntsman Cancer Institute (HCI). This
information will help you prepare for a successful visit.
We recommend you call your insurance
company at least a week before your first
Before Your Visit
Call your health insurance company to find out the
following information:
• Do they need to okay your procedures or treatments
ahead of time?
• Do you need a referral to see our doctors? If you do,
please get a referral from your primary care physician
and bring it to your first appointment.
• Do you need to make co-payments? If you do, please
bring that amount with you to each visit. We accept all
major credit cards, checks, and cash.
visit. That allows us enough time to get
pre-authorization if necessary.
• Staff and volunteers at the front information desks can
direct you to your clinic.
• Please do not bring children younger than age 14 to
your appointments.
• Please do not bring pets unless they are certified
service animals.
What to Bring to Your First Visit
rr An adult family member or friend
What to Expect during Your First Visit
rr Picture ID
• Plan on your first clinic appointment taking from one
rr Your insurance and prescription cards
to four hours.
rr The new patient packet you received, with forms completed • Register and check in at the time and location on
rr A list of all medications, vitamins, or herbal supplements
your itinerary.
you normally take, or their original containers
• Plan on meeting several members of your health care
rr A list of your allergies
team. You will meet your doctors, nurses, and social
rr Your co-payment
workers; advanced practice clinicians; and residents
rr Items to help you pass time, such as a book or laptop
and fellows (doctors in specialized medical training).
(free Wi-Fi is available throughout the buildings)
• We will invite you to sign up for MyChart, a secure
rr Your medical records*
online way to access your health information and
rr A copy of your advance health care directive**
message your doctor: https://mychart.med.utah.edu.
rr A list of questions for your doctor (see “What Should I
If You Have Questions
Ask?” on page 5)
• Please call 801-585-0100 or toll free 1-866-275-0243.
Arriving for Your Visit
• If you will have long-term treatment at HCI, your
• If you have a GPS, enter “1950 Circle of Hope, Salt
care team will give you a patient education binder. It
Lake City, UT 84112” for directions.
is yours to keep. Refer to it to learn more about your
• A driving map is on the last page of this booklet.
treatments, side effects, and helpful resources. Please
• Please use our free valet parking for an easy start to
bring it to each appointment so your health care team
your first visit. It’s available in the circle at the front
can update it.
entrance of the Cancer Hospital, 7 a.m. to 5:30 p.m.
• For general information about cancer, call the Cancer
Monday through Friday.
Learning Center at 801-581-6365 or 1-888-424-2100.
• Wheelchair assistance is available in the lobbies of both
the hospital and research buildings.
*Our staff may already have some of your medical records, but you may need to bring results or a copy of scans from
previous tests. Your oncology patient coordinator will tell you if more records are needed.
**An advance health care directive is a document that states your medical care wishes. It guides those involved in your
health care if you are unable to speak for yourself. You can access the forms and more information at these websites:
• Utah residents: http://aging.utah.edu/programs/utah-coa/directives
• Residents of other states, visit the U.S. Living Will Registry: http://uslwr.com/formslist.shtm
3
COMMUNICATING WITH YOUR HEALTH CARE TEAM
Clear communication helps everyone. When you tell your
doctors what you are experiencing, they can help solve
problems and improve the outcome of your treatment.
Their answers to your questions can ease your fears and
allow you to follow the treatment plan correctly.
• After your doctor or nurse gives you instructions,
repeat back what you heard. This will help your team
know that you understand.
Good communication lets you be an effective member of
your cancer care team. Other members of your health care
team—nurses, oncology patient coordinators, and licensed
clinical social workers from Huntsman Cancer Institute
Patient and Family Support—are also here to help you.
The more honest you are, the more they can help you.
• Ask questions about anything you don’t understand. If you
hear something that makes you feel scared, say so. More
information from your doctor may help ease fears.
• Write down the instructions your doctor or nurse gives
you. That way you can remember the details later.
• Tell your health care team about anything you have
done that has helped with your symptoms or made
them worse. This might include foods, herbs, or
supplements you have taken. Your doctor will want to
be sure they do not interfere with your treatments.
Here are some pointers to help you communicate clearly:
• Bring a friend or family member with you to take
notes at your appointments. That way, you can focus
on listening to your health care team. Use the notes as
a reminder later.
• Sign up for MyChart: https://mychart.med.utah.edu
• Ask your nurse or doctor to explain medical terms in
simple language. Your team needs you to understand,
and they will be happy to help you.
Good communication lets you be an effective member of your cancer care team.
The more honest you are, the better your health care team can help you.
4
TEAMWORK FOR SAFE CARE
WHAT SHOULD I ASK?
You will have a lot to think about during your first
appointment. Here are some questions you may want to
ask your health care team during this visit.
You CAN help your health care team.
Remember the words:
Learning about Your Cancer
CHECK
• What stage is my cancer? What does that mean?
• Has my cancer spread from its original location?
If so, where?
• What are the survival statistics for my cancer stage?
ASK
NOTIFY
Here are important tips to remember at every visit.
Check to make sure things look right. For example,
is your chemotherapy the same color it was last time?
Are your pills the same shape? If you notice anything
out of the ordinary, we want to know about it.
Deciding on Your Treatment Plan
• What type of treatment do you recommend? Why?
• What risks and side effects can happen with
this treatment?
• Will I need more than one type of treatment?
• Are there other treatment options? How are
they different?
• How will this treatment plan affect my chances of
survival and long-term health?
• What will happen if I decide to wait until later
for treatment?
• What will happen if I decide not to have treatment?
Check to make sure you’ve understood your care
providers by repeating information they have given.
Everyone on your team, including you, should
understand instructions and explanations. Team
members should remind one another about important
safety issues.
Ask what side effects to expect from your
medications and what to do if you have those
side effects.
Understanding Your Treatment Plan
Ask your health care providers if they washed their
hands. Huntsman Cancer Institute staff has some
of the best hand-washing rates in the country, but
some staff members may forget once in a while.
• How soon do I need to start treatment?
• Will I need to stay in the hospital? If so, for
how long?
• How often do I need treatments?
• How long will treatments last?
• Are there clinical trials in which I can take part?
If so, how do I enroll?
Ask your doctor or nurse to repeat anything you
didn’t hear or understand.
Ask any other questions you have about your
treatment or care.
Learning about Side Effects
Team members speak up when they notice something
that doesn’t seem right or could cause a problem.
They also share information that will help the team
perform better. As a member of your team, you CAN
do the following:
• How should I expect to feel during and after treatment?
• What side effects can I expect?
• What side effects should I tell my cancer care team
about immediately?
• If I am in pain or having side effects and it is after
hours, whom should I call for help?
Notify your care providers about any problems
you’ve had between visits.
Finding Out about Lifestyle Changes
Notify your nurse if your doctor made any lastminute changes to your treatment. Even though
your caregivers work as a team, you can help make
sure everyone has the same information.
• Will I be able to work while under treatment?
• Will I need to limit my daily or recreational
activities because of treatment?
• Is there any special diet I should follow before,
during, and after treatment?
• Who can I talk to about my emotional concerns?
• Are there others who have been through this process
I can talk to?
Notify your care providers about any side effects
you have experienced since your last visit, or
anything else that might affect your treatment.
5
THE MULTIDISCIPLINARY CARE TEAM
At Huntsman Cancer Institute (HCI), a team of cancer
experts will work together to care for you. During your
first visit, you will meet many team members. Your official
appointment time may begin with any member of your
team. The attending doctor who directs your care may
not be the first person you meet. All the members of your
cancer care team communicate with each other to plan
and give your treatment.
Doctors
• Attending doctors are experienced oncologists (cancer
specialists) and surgeons. They direct your care.
• A fellow is a licensed doctor who has completed
medical school and three or more years of
specialty training.
• Residents and interns have completed medical school
and earned the title of doctor.
The following list tells how different team members
contribute to your care. If you would like to know
more about the role of any member of your health care
team, please ask. Your team members want you to feel
comfortable and supported.
• Medical students are in the process of earning their
medical degrees. They help with your care while in
training with your attending doctor.
Advanced Practice Clinicians
Advanced practice clinicians are nurse practitioners
(NP) and physician assistants (PA) who have completed
advanced education programs and medical training.
These licensed health care providers are important
members of your health care team, and can do exams and
procedures, order tests, and write prescriptions.
Your appointment may begin with
any member of your team.
The attending doctor may not be the
first person you meet.
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Nurses
• The registered nurses at HCI coordinate and
implement each patient’s treatment plan by
providing compassionate care and ensuring safety.
They can answer many of your questions about
your care and help you cope with side effects of
your treatment. Many HCI nurses have completed
specialized cancer training to become oncology
certified nurses (OCN).
• A case manager is a registered nurse who coordinates
your cancer care plan with all members of your
health care team. The case manager monitors your
needs during and after treatment and keeps your
health care team informed.
WHAT ARE CLINICAL TRIALS?
Clinical trials are studies of new cancer treatments.
Trials help doctors find better ways to prevent,
diagnose, or treat disease. Nearly all cancer treatments
used today began with clinical trials.
• Clinical trials help improve cancer treatments and
work toward finding a cure.
• Clinical trials help find new treatments that
work better or have fewer side effects than
current remedies.
• Clinical trials lead to more treatment options for
cancer patients.
Your doctor can tell you if participating in a clinical
trial is a good option. Clinical trials are experiments,
so they have risks as well as benefits. Risks depend on
the treatment being studied and on your health. You
always make the final decision whether to enroll, after
you understand all the potential risks and benefits.
Other Care Providers
• Medical assistants work in the outpatient clinics.
They gather your health information and help
doctors and nurses with procedures.
• If you have to stay in the hospital, health care
assistants will help you with daily activities such as
bathing and grooming.
The U.S. Food and Drug Administration must
approve new treatments before they can be widely
used. Clinical trials are part of the approval process.
Oncology Patient Coordinators
This is your first point of contact at HCI. They help you
with these important services:
• Arrange appointments with your health care team
• Check your insurance coverage
• Set up appointments with financial counselors
• Prepare your charts and papers
• Meet you face-to-face and guide you through your
first appointment
For more information, contact Clinical Trials:
Monday−Friday 8 a.m.−5 p.m.
801-581-4477
Toll free: 1-877-585-0303
E-mail: [email protected]
www.huntsmancancer.org/clinicaltrials
Pharmacists
Pharmacists work with your doctors and nurses to create
your medication plan. They compound and dispense
the medicines your doctors prescribe. They can give you
a lot of information about the drugs you are taking.
Patient and Family Support
• Social workers from Patient and Family Support can
help you cope with the emotions and life changes
that come from a cancer diagnosis. They can teach
ways to deal with stress and find support groups.
• Our multi-faith chaplain provides spiritual support
for patients and their loved ones. The chaplain helps
find meaning and comfort in difficult times.
Registered Dietitians
A registered dietitian can give you the best advice on diet
and nutrition. Consultations are free for HCI patients.
7
WHAT IS CANCER?
Cancer is a term used for diseases in which abnormal
cells divide without control and are able to invade other
tissues. Cancer cells can spread to other parts of the body.
Cancer is not just one disease but many diseases. There are
more than 100 different types of cancer. Most cancers are
named for the organ or type of cell where they start. For
example, cancer that begins in the colon is called colon
cancer; if it begins in the breast, it is called breast cancer.
Cancer types can be grouped into broader categories.
The main categories of cancer include the following:
• Carcinoma is cancer that begins in the skin or in tissues
that line or cover internal organs.
• Sarcoma is cancer that begins in bone, cartilage, fat,
muscle, blood vessels, or other connective or
supportive tissue.
• Leukemia is cancer that starts in blood-forming tissue
such as the bone marrow and causes large numbers of
abnormal blood cells to be produced and enter the blood.
• Lymphoma and myeloma are cancers that begin in the
cells of the immune system.
• Central nervous system cancers begin in the tissues of the
brain and spinal cord.
However, sometimes this orderly process goes wrong. The
genetic material (DNA) of a cell can become damaged
or changed, producing mutations that affect normal cell
growth and division. When this happens, cells do not die
when they should, and new cells form when the body
does not need them. The extra cells may form a mass of
tissue called a tumor.
Not all tumors are cancerous. Tumors can be benign
or malignant.
Benign tumors aren’t cancerous. They can often be
removed, and, in most cases, they do not come back. Cells
in benign tumors do not spread to other parts of the body.
Origins of Cancer
All cancers begin in cells, the body’s basic unit of life.
To understand cancer, it’s helpful to know what happens
when normal cells become cancer cells.
Malignant tumors are cancerous. Cells in these tumors
can invade nearby tissues and spread to other parts of the
body. The spread of cancer from one part of the body to
another is called metastasis. Most cancers are named for
the part of the body where they begin, and they keep that
name when the cancer spreads—cancer that starts in the
breast is still called breast cancer if it spreads to the lungs.
The body is made up of many types of cells. These cells
grow and divide in a controlled way to produce more cells
as they are needed to keep the body healthy. When cells
become old or damaged, they die and are replaced with
new cells.
Some cancers do not form tumors. For example, leukemia
is a cancer of the bone marrow and blood.
There are more than 100 different types
of cancer. Most cancers are named
for the organ or type of cell where they start.
Information on this page comes from the National Cancer
Institute. Find more information from these trusted websites:
Huntsman Cancer Institute: www.huntsmancancer.org
National Cancer Institute: www.cancer.gov
American Cancer Society: www.cancer.org
For example, cancer that starts in the colon is
called colon cancer, and cancer that starts in
the breast is called breast cancer.
8
HOW IS CANCER TREATED?
Cancer is treated and controlled in many ways, depending
on the type, location, and stage of the disease. Here is a
general description of cancer treatment types.
The cancer treatment you receive
Biological therapy helps the body fight cancer, manages side
effects, and helps prevent cancer. This treatment includes
monoclonal antibodies, growth factors, and vaccines.
depends on the type, location,
and stage of the disease.
Chemotherapy uses drugs to fight cancer throughout the
body. Some chemotherapy is given through a needle
or catheter placed in a vein in the arm or through an
implanted port in the chest. Other types of chemotherapy
are taken by mouth.
Doctors often use a
combination of treatments.
Clinical trials study and discover new or improved ways
to treat, diagnose, and prevent cancer. Some clinical
trials discover new treatments. Others study new delivery
methods or combinations of treatments already in use.
Radiation therapy uses high-energy rays to kill cancer cells
or shrink tumors. Radiation may come from a machine
outside the body (external-beam radiation therapy), or it
may come from radioactive material placed in the body
near cancer cells.
Integrative health and wellness therapies are used along with
standard treatments (such as surgery and chemotherapy)
to help reduce symptoms, manage treatment side effects,
and improve overall well-being. Acupuncture, massage
therapy, dietary changes, and meditation are examples.
Stem cell transplant is a procedure to replace cells that
produce blood. The patient receives high doses of
chemotherapy, radiation, or both, which kill cancer cells
and healthy cells in the bone marrow where blood is
formed. The patient then receives new blood-forming stem
cells through an IV. Healthy blood cells develop from the
transplanted stem cells.
Hormone therapy keeps cancer cells from getting or using
the hormones they need to grow. This type of therapy may
use medicines that stop hormone production or surgery to
remove organs that make hormones.
Surgery removes the tumor and some tissue around it.
Taking some nearby tissue may help prevent the tumor
from growing back and can help the doctor know if all
the cancer was removed. The surgeon may also remove
some nearby lymph nodes.
Supportive oncology care enhances cancer treatment by
improving quality of life for patients at all stages of disease
and treatment. It helps manage pain and other cancer
symptoms and treatment side effects. It also provides
mental health, spiritual support, and assistance with
medical decision making and advance care planning.
Targeted therapy is a type of biological therapy that uses
medicines to find specific cancer cells and to stop cancer
from growing.
Most people with cancer receive some
Watchful waiting (also called active surveillance or expectant
management) means health care providers closely watch
a patient’s condition, but do not give treatment unless
symptoms appear or change.
combination of surgery,
chemotherapy, or radiation therapy.
Your health care team will help you decide
on the best treatment plan.
9
SERVICES FOR OUR PATIENTS AND CAREGIVERS
Social Media
Join our circle of hope on
Facebook, Twitter, Instagram, a
blog, and more. Find news and
events, read helpful tips, and
hear from others who are also
affected by a cancer diagnosis.
Patient and Family Support
Strong emotions and major life
changes can come from a cancer
diagnosis. Our Patient and
Family Support social workers
help patients and their loved ones
cope. Free and confidential.
801-585-9755
www.huntsmancancer.org/pfs
Linda B. and Robert B. Wiggins
Wellness and Integrative
Health Center
Offering programs and services
for people with cancer and their
loved ones to improve quality of
life. Here are some examples:
• Acupuncture. This technique
uses fine needles inserted
through the skin at specific
points to help control pain,
nausea, and other symptoms.
• Fitness. Cancer exercise
specialists lead classes and
outdoor activities for patients
and caregivers.
• Massage. This relaxing therapy
relieves muscle tension,
reduces stress, and brings calm.
• Music, Art, and Writing
Workshops. Enjoy creative
self-expression to communicate
thoughts and emotions.
• Nutrition. Your diet can support
your cancer treatments and help
manage side effects. Talk oneon-one with a nutrition specialist.
801-587-4585
www.huntsmancancer.org/
wellnesscenter
G. Mitchell Morris
Cancer Learning Center
Borrow books, CDs, and videos.
Talk with a cancer information
specialist. Use a computer.
Enjoy some peace and quiet
in a comfy chair. Walk-ins
encouraged! Free for everyone.
The Cancer Learning Center’s
multipurpose room hosts many
patient activities and programs.
Cancer Hospital, 6th floor
Open 8 a.m.–5 p.m. weekdays
Phone:801-581-6365
1-888-424-2100 toll free
E-mail:
[email protected]
Text: “askhci” to 66746
Chat Live: “Ask a Question”
button on any HCI webpage
Volunteers
Elyse Pantke White
Chapel and Meditation Room
Enjoy a comfortable space for
quiet reflection. On the 5th floor
of the Cancer Hospital, to the
left when leaving the elevators.
You’ll see them in the waiting
rooms, serving free drinks and
snacks. More
important,
they bring
caring
attitudes and
listening ears.
Most of our
volunteers
are cancer
survivors
themselves.
ATM
A University
Credit Union
ATM is located
on the 6th floor
of the cancer
hospital.
10
SERVICES FOR OUR PATIENTS AND CAREGIVERS
Free Valet
The Miche Healing Garden
Food, Drinks, and Snacks
• The Bistro. Breakfast, lunch,
dinner, and snacks. Eat in or
take out.
Mon.−Fri. 7 a.m.–5:30 p.m.
Leave your
car at our front
door when you
arrive, and
we’ll bring it
back to you
when you are
ready to go.
Enjoy open space, fresh
air, and comfortable chairs on a
large patio behind the Cancer
Hospital. If you need a refreshing
walk, the Bonneville Shoreline
Trail passes just above. Access
from the family lounge area on
the 4th floor.
(No tipping,
please.)
Cancer Hospital, 6th floor
7 a.m.–9 p.m. weekdays
7 a.m.–7 p.m. weekends
and holidays
Chaplain
• The Point. Breakfast and
lunch. Eat in or take out.
Research Building, 6th floor
7 a.m.–2 p.m. weekdays
Gift Shop
• Starbucks at the University of
Utah Hospital. Coffee, drinks,
and snacks.
Cards, gifts,
toiletries, and
snacks
University Hospital main lobby
Open 24 hours a day
7 days a week
Cancer
Hospital Lobby
Our multi-faith chaplain provides
spiritual support for patients and
their loved ones. The chaplain
helps each person find meaning
and comfort in difficult times.
To contact the chaplain, call the
hospital operator:
801-213-2484
801-21-FAITH
Open weekdays
8:30 a.m.–5:30 p.m.
Financial Advocates
If you need help understanding
your insurance, are worried
you won’t be able to pay for
your cancer
care, or can’t
figure out your
medical bills,
our financial
advocates
can help.
801-587-4036
801-587-4037
Pharmacy
Get your prescriptions filled at
the time of your appointment,
with same-day refills on most
prescriptions.
First floor of the Cancer Hospital
Phone: 801-585-0172
Toll free 1-877-724-9291
Hours: Weekdays 8 a.m.−6 p.m.
Saturdays 9 a.m.−3 p.m.
Closed Sundays and major holidays
Patient and Family Housing
Make your transition away from
home more convenient and
affordable. Amenities include
support groups, shuttle services,
financial assistance, indoor
pool, and affordable rates in a
warm, clean, and welcoming
environment.
For reservations, eligibility, or
more information, call or e-mail
801-521-4763
[email protected]
11
DRIVING MAP
HUNTSMAN CANCER INSTITUTE
1950 Circle of Hope
Salt Lake City, Utah 84112
FREE VALET PARKING
Mon.−Fri. 7 a.m.–5:30 p.m.
No tipping, please!
Leave your car with a valet at the front
door of the Cancer Hospital and we’ll
bring it back when you are ready to go.
Or, park your car in the parking terrace.
QUESTIONS?
Call the information desk at 801-587-7000
or toll free 1-800-824-2073.
Huntsman
Cancer Institute
Primary Children’s Hospital
Cancer Hospital
Parking
Terrace
Jon M. Huntsman Research Building
Primary Children’s and
Families’ Cancer Research Center
(in construction)
B
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