Welcome to HUNTSMAN CANCER INSTITUTE Important Information to Help with Your First Appointment Produced July 2017 - Review Date July 2020
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
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. ABOUT US Huntsman Cancer Institute (HCI) is part of University of Utah Health. Every year, HCI serves thousands of cancer patients from Utah and the suounding 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. 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. Our staff and management appreciate 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. Before Your Visit We recommend you call your insurance company at least a week before your first visit. That allows us enough time to get pre-authorization if needed. 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 refeal to see our doctors? If you do, please get a refeal 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. What to Bring to Your First Visit An adult family member or friend Picture ID Your insurance and prescription cards The new patient packet you received, with forms completed A list of all medications, vitamins, or herbal supplements you normally take, or their original containers A list of your allergies Your co-payment Items to help you pass time, such as a book or laptop (free Wi-Fi is available throughout the buildings) Your medical records* A copy of your advance health care directive** A list of questions for your doctor (see What Should I Ask? on page 5) Aiving for Your Visit If you have a GPS, enter 1950 Circle of Hope, Salt Lake City, UT 84112 for directions. A driving map is on the last page of this booklet. Please use our free valet parking for an easy start to your first visit. It s available in the circle at the front entrance of the Cancer Hospital, 7 a.m. to 5:30 p.m. Monday through Friday. For the health and safety of all patients, children under age 12 are not allowed in clinic areas during flu season (November May) or in the Infusion Center year-round. Wheelchair assistance is available in the lobbies of both the hospital and research buildings. Staff and volunteers at the front information desks can direct you to your clinic. Children under age 12 are not allowed in clinic areas during flu season (November May) or in the Infusion Center year-round. They are always welcome in public spaces such as lobbies and restaurants. Please do not bring pets unless they are certified service animals. What to Expect during Your First Visit Plan on your first clinic appointment taking from one to four hours. Register and check in at the time and location on your itinerary. Plan on meeting several members of your health care team. You will meet your doctors, nurses, and social workers; advanced practice clinicians; and residents and fellows (doctors in specialized medical training). We will invite you to sign up for MyChart, a secure online way to access your health information and message your doctor: https://mychart.med.utah.edu. If You Have Questions Please call 801-585-0100 or toll free 1-866-275-0243. If you will have long-term treatment at HCI, your care team will give you a patient education binder. It is yours to keep. Refer to it to learn more about your treatments, side effects, and helpful resources. Please bring it to each appointment so your health care team can update it. For general information about cancer, call the Cancer Learning Center at 801-581-6365 or 1-888-424-2100. *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 coectly. 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
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. Learning about Your Cancer 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? 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? Understanding Your Treatment Plan 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? Learning about Side Effects 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? Finding Out about Lifestyle Changes 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? 5 TEAMWORK FOR SAFE CARE You CAN help your health care team. Remember the words: CHECK ASK Here are important tips to remember at every visit. NOTIFY 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. 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. 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. 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. 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: Notify your care providers about any problems you ve had between visits. 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. Notify your care providers about any side effects you have experienced since your last visit, or anything else that might affect your treatment.
THE MULTIDISCIPLINARY CARE TEAM Doctors 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. 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. 6
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. 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. Oncology Patient Coordinators This is your first point of contact at HCI. They help you with these important services: Aange 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 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 cuent 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. 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. 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: clinical.trials@hci.utah.edu 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 maow 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 maow 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. Biological therapy uses substances made from living organisms to treat cancer, manage side effects, and help prevent cancer. Vaccines and immunotherapy are examples of biological therapy, where the body s own immune system fights cancer. 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. 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. 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. 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. 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. Most people with cancer receive some combination of surgery, chemotherapy, or radiation therapy. The cancer treatment you receive depends on the type, location, and stage of the disease. Doctors often use a combination of treatments. 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 maow 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. 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. 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. Targeted therapy is a type of biological therapy that uses medicines to find specific cancer cells and to stop cancer from growing. 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. 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 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. 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 ATM A University Credit Union ATM is located on the 6th floor of the cancer hospital. G. Mitchell Mois Cancer Learning Center Boow 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: cancerinfo@hci.utah.edu Text: askhci to 66746 Chat Live: Ask a Question button on any HCI webpage Volunteers 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. 10
SERVICES FOR OUR PATIENTS AND CAREGIVERS Food, Drinks, and Snacks The Bistro. Breakfast, lunch, dinner, and snacks. Eat in or take out. Cancer Hospital, 6th floor 7 a.m. 9 p.m. weekdays 7 a.m. 7 p.m. weekends and holidays The Point. Breakfast and lunch. Eat in or take out. Research Building, 6th floor 7 a.m. 2 p.m. weekdays Starbucks at The Point. Research Building, 6th floor 6 a.m. 6 p.m. weekdays Starbucks at the University of Utah Hospital. Coffee, drinks, and snacks. Main lobby, Open 24 hours a day, 7 days a week The Miche Healing Garden 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. Gift Shop Cards, gifts, toiletries, and snacks Cancer Hospital Lobby Open weekdays 8:30 a.m. 5:30 p.m. Free Valet Mon. Fri. 7 a.m. 5:30 p.m. Leave your car at our front door when you aive, and we ll bring it back to you when you are ready to go. (No tipping, please.) Chaplain 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 Financial Advocates If you need help understanding your insurance, are woied 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 uuhclodging@utah.edu 11
DRIVING MAP HUNTSMAN CANCER INSTITUTE 1950 Circle of Hope Salt Lake City, Utah 84112 QUESTIONS? Call the information desk at 801-587-7000 or toll free 1-800-824-2073. 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 teace. Primary Children s Hospital Parking Teace Huntsman Cancer Institute Cancer Hospital Jon M. Huntsman Research Center Primary Children s and Families Cancer Research Center B 12