Advanced Bladder Cancer a Guide for Patients and Caregivers

ADVANCED BLADDER CANCER A GUIDE FOR PATIENTS AND CAREGIVERS

JIM KAAT MLB Pitching Legend and Broadcaster

Presented by... Funding support provided by... Letter to the Reader

Getting a diagnosis of advanced bladder cancer can be scary and overwhelming! Although it might seem impossible to sift through all of the new information you are faced with, be sure to consult your healthcare team with questions. You can also educate yourself with trustworthy resources like this guidebook.

Provided to you through a partnership between the Society of Urologic Oncology (SUO) and Bristol Myers Squibb, this guidebook will help you better understand advanced bladder cancer, how it can be treated, and resources available to help you improve your health and well-being.

The SUO is dedicated to the care of patients with malignant genitourinary diseases (like bladder cancer) and to meeting for the purpose of discussion, development, and implementation of ideas to improve care.

Bristol Myers Squibb is a global biopharmaceutical company whose mission is to discover, develop, and deliver innovative medicines that help patients prevail over serious diseases.

2 ADVANCED BLADDER CANCER Contents

Introduction 4

Types of Bladder Cancer 6

Bladder Cancer Staging 10

Treatment Options for Advanced Bladder Cancer 15

Surgery 15

Radiation Therapy 18

Chemotherapy 20

Immunotherapy 22

Treating Advanced Bladder Cancer 24

Your Treatment Team 24

Preparing for Your Visit with Your Treatment Team 26

Coping with Cancer 28

Food and Nutrition 31

Financial and Insurance Issues 32

Finding Resources for Patients and Caregivers 32

Conclusion – Speak Up! 35

Your Notes 35

Glossary 38

Major League Baseball trademarks and copyrights are used with permission of Major League Baseball. Visit MLB.com. Head shot courtesy of Jim Kaat.

A GUIDE FOR PATIENTS AND CAREGIVERS 3 Introduction

Bladder cancer is a disease in which cells that make up the inside lining of the bladder start to grow out of control. If more cells develop, they can form a tumor or spread to other parts of the body.

Bladder cancer is the sixth most common type of cancer in the United States, but it is the fourth most common cancer in men and the eleventh most common cancer in women. In 2020, it is estimated there will be more than 81,000 new cases of bladder cancer, making up 4.5% of all new cancer cases.

81K 4.5%

EST. NEW CASES OF ALL NEW BLADDER CANCER CANCER CASES IN 2020

White men are more likely to develop bladder cancer than women, and these men are more likely to develop the cancer later in life, when they are in their early 70s.

Common risk factors for bladder cancer include:

• Smoking • Family history • Workplace exposures • Chronic bladder irritations and infections • Old age • Race and ethnicity

4 ADVANCED BLADDER CANCER A GUIDE FOR PATIENTS AND CAREGIVERS 5 Types of Bladder Cancer

The bladder is made up of four different layers, and each layer is made up of a different type of cell. When cancer occurs, cells from one of these layers grows out of control, causing a tumor. The type of cancer that occurs depends on the type of cell that is growing out of control.

Most bladder cancers start in the urothelium (the lining of the bladder), and as the cancer grows into or through other layers of the bladder, it becomes more advanced.

LAYERS OF THE BLADDER WALL

Tumor

Fatty Layer

Muscle

Connective Tissue

Urothelium

6 ADVANCED BLADDER CANCER Three types of bladder cancer begin in the cells that line the bladder. Each of these is named for the type of cell that becomes cancerous.

1 UROTHELIAL CARCINOMA

Urothelial carcinoma, formerly called transitional cell carcinoma (TCC), forms from the cells that line the inside of the bladder (called urothelial cells). Urothelial is the most common form of bladder cancer and can be either low-grade or high-grade.

• Low-grade urothelial cancer… - Often comes back after treatment - Rarely spreads into the muscle layer of the bladder or other parts of the body

• High-grade urothelial cancer… - Often comes back after treatment - Often spreads into the muscle layer of the bladder - Has a higher risk of spreading to other parts of the body and to lymph nodes

2 SQUAMOUS CELL CARCINOMA

Squamous cell carcinoma begins in the urothelium when urothelial cells change into squamous cells. This type of cancer may form after lengthy infection or irritation.

3 ADENOCARCINOMA

Adenocarcinoma is a rare type of bladder cancer that starts in the urothelium when urothelial cells change into glandular cells.

A GUIDE FOR PATIENTS AND CAREGIVERS 7 Other types of bladder cancer that occur less frequently than urothelial cancer include small-cell carcinoma and sarcoma. The graphic below shows the less common types of bladder cancer, how often they occur, and other information about these cancers in relation to other cancers. In addition, urothelial cancer can be a mixture of cell types in up to 25% of patients, with subtypes including those listed in the graphic plus others like glandular, lymphoepithelial, sacromatoid, micropapillary, and plasmacytoid.

Less Common Types of Bladder Cancers in Relation to Other Cancers % = How Often It Occurs (Frequency)

LUNG AND COLON AND SKIN CANCER BLADDER BREAST PROSTATE BRONCHUS RECTUM (MELANOMA) CANCERS

15% 13% 11% 8% 6% 4.5%

% OF ALL NEW CANCER CASES

FREQUENCY OF DIFFERENT UROTHELIAL TYPES OF 90% CARCINOMA BLADDER CANCER: 1-2% SQUAMOUS CELL CAN BE MORE AGGRESSIVE CARCINOMA (HARDER TO TREAT)

ALMOST ALWAYS MORE 1% ADENOCARCINOMA LIKELY TO SPREAD AND HARDER TO TREAT

SMALL-CELL STARTS IN NERVE-LIKE <1% CARCINOMA CELLS AND CAN GROW FAST

VERY STARTS IN THE MUSCLE RARE SARCOMA LAYERS OF THE BLADDER

8 ADVANCED BLADDER CANCER At a Glance: Non-Muscle Invasive or Muscle Invasive?

Bladder cancer is often described based on if it has spread into the wall of the bladder and, if so, how far. It can be non-muscle invasive, where the cancer is only in the urothelium lining the inside of the bladder or invasive only into the lamina propria (the layer that supports the urothelium). Non-muscle invasive bladder cancer is when the cancer exists only in the inner layer of cells lining the bladder. It used to be called “superficial” bladder cancer but has been replaced by the more precise term “non-muscle invasive.” So, when the cancer has not grown through the bladder muscle wall, it is called non-muscle invasive bladder cancer.

When the cancer has spread through the lining of the bladder and invades the muscle wall, or spreads to nearby organs and lymph nodes as in advanced bladder cancer, it is called muscle invasive bladder cancer. These cancers are associated with a higher risk of spread outside the bladder and are harder to treat.

A GUIDE FOR PATIENTS AND CAREGIVERS 9 Bladder Cancer Staging

After a person is diagnosed with bladder cancer, doctors need to determine the extent to which the cancer has traveled through the wall of the bladder or to other distant parts of the body. Determining how much or how far the cancer has spread is called staging, and it helps to determine how the cancer can be treated. Staging is the process your doctor used to determine that you have advanced bladder cancer.

The system used to help determine the stage of bladder cancer is called the TNM system. This system is based on three important pieces of information: tumor, lymph nodes, and metastasis.

• T in the TNM system refers to the tumor. It helps determine how far the main tumor has grown through the bladder wall and whether or not it has grown into nearby tissues. • N refers to the lymph nodes. Lymph nodes are small collections of special cells that are normally able to fight off infection and cancer cells. For this staging, it is important to know whether the cancer has spread to the lymph nodes. • M stands for metastasis, which is when the cancer spreads to a distant site in the body like the lungs or the liver.

10 ADVANCED BLADDER CANCER There are also categories that give more information about the letters T, N, and M. The higher a number that’s next to one of the letters, the more advanced the cancer is. Muscle invasive and advanced bladder cancer is described as T2 to T4:

T2 Tumor has spread into the muscle wall of the bladder Tumor has spread through the muscle wall and into the T3 fat around the bladder

Tumor has spread to other parts of the body close to the T4 bladder or in the pelvis, including the prostate in men or the vagina/uterus/cervix in women

Fatty Layer

T3 Muscle T4 Connective Tissue Bladder Lining (Urothelium)

A GUIDE FOR PATIENTS AND CAREGIVERS 11 The TNM system has stages starting at 0 and going through IV. Stage 0 is a very early stage of cancer, while stage IV means that the cancer is more advanced. TNM staging for advanced bladder cancer is explained in more detail in the graphic below.

TNM Staging for Advanced Bladder Cancer

STAGE IIIA

• Cancer has spread to the layer of fat surrounding the bladder and possibly to the reproductive organs; it has not spread to lymph nodes OR • Cancer has spread from the bladder to one lymph node in the pelvis, not near major arteries in the pelvis

STAGE IIIB

• Cancer has spread from the bladder to more than one lymph node in the pelvis, not near the major arteries in the pelvis OR • Cancer has spread to at least one lymph node that is near the major arteries in the pelvis

STAGE IVA

• Cancer has spread to the wall of the abdomen or pelvis OR • Cancer has spread to lymph nodes that are above the major arteries in the pelvis

STAGE IVB

• Cancer has spread to other parts of the body such as bone, liver, or lung

12 ADVANCED BLADDER CANCER At a Glance: What Is Tumor Grade?

After a doctor takes a sample of a tumor, the tumor cells and tissue are examined under a microscope to determine how normal or abnormal they look. This description is the grade of the tumor and indicates how quickly a tumor will grow and spread. Bladder cancer can be described as low-grade or high-grade.

When the tumor cells look similar to healthy cells, they tend to grow and spread more slowly and are described as “well-differentiated.” These tumors are considered to be low-grade.

“Undifferentiated” and “poorly differentiated” tumors have abnormal-looking cells that can grow and spread quickly. These are considered high-grade tumors.

Grade is not the same as the stage of cancer. Grade is what cancer cells look like compared to normal cells when examined under a microscope, while stage describes how far the cancer has spread through the bladder, to surrounding structures, or distantly throughout the body.

A GUIDE FOR PATIENTS AND CAREGIVERS 13 14 ADVANCED BLADDER CANCER Treatment Options for Advanced Bladder Cancer

Every case of advanced bladder cancer is unique, and the type of treatment will be determined by the care team based on the stage of the tumor, how fast the cancer cells are growing, and the person’s health and preferences. There are four standard treatments for bladder cancer:

• Surgery • Radiation therapy • Chemotherapy • Immunotherapy

Below are explanations of each of the treatments; then you’ll see which treatments are recommended depending upon the stage.

Surgery

Transurethral Resection of Bladder

Transurethral resection of bladder tumor (TURBT), also referred to as transurethral resection (TUR), is a type of surgery often used to find out if someone has bladder cancer. It can also be used to determine whether the cancer has spread to the muscle layer of the bladder. This surgery is done using a small instrument inserted in the bladder through the urethra. A wire loop at the end of the instrument is used to remove a tumor or abnormal tissue. The tissue or tumor is then sent to a lab to be tested. A patient undergoing TURBT will usually go home from the hospital or surgery center the same day or the next day and can resume normal activities within a week or two. Side effects are typically mild and could include some bleeding or pain when urinating right after surgery.

A GUIDE FOR PATIENTS AND CAREGIVERS 15 Cystectomy

A cystectomy is an operation to remove part or all of the bladder. This type of surgery is done when the cancer is more invasive, meaning it has gone through some of the bladder cell wall layers. There are two different types of cystectomies: partial cystectomy or radical cystectomy.

A partial cystectomy is when only a part of the bladder needs to be removed. This is rarely an option for advanced bladder cancer.

A radical cystectomy is when the entire bladder is removed because the cancer is invasive or in more than one part of the bladder. The surgery itself can be done through a cut in the abdominal area or through a laparoscopic/robotic approach. With a laparoscopic/robotic approach, several smaller incisions are made around the abdomen. Then, long, thin instruments are put into the incisions allowing the doctor to perform the surgery using a tiny video camera and small instruments. A small incision is still required to remove the bladder.

16 ADVANCED BLADDER CANCER Since the body still makes urine after the bladder is removed, the surgeon will reconstruct a way for urine to leave the body after a radical cystectomy. Radical cystectomy is a complex surgery that comes with some risks, which can be different for each patient. If you’re going to have this surgery, talk with your surgeon about these risks and possible complications.

You can expect to be in the hospital for up to a week after this type of surgery and will need several weeks of recovery time at home after that. There may be some pain or discomfort around the surgery site for a few weeks, but it gradually gets better. There will be urinary changes after this type of surgery as well. Your doctor will follow up with you after surgery to make sure everything is working correctly.

Lymphadenectomy

Bladder cancer has a predictable pattern of spread to the pelvic lymph nodes. These are removed on both sides as part of a partial or radical cystectomy.

A GUIDE FOR PATIENTS AND CAREGIVERS 17 Radiation Therapy

Radiation therapy uses high-energy beams of radiation to kill cancer cells. In people with bladder cancer, the type of radiation therapy used most often is called external beam radiation because the radiation is coming from a source outside the body. The treatment is similar to getting an X-ray except that beams of radiation, at specific doses, are aimed at the cancer in the body. When used for advanced bladder cancer, radiation therapy can be used for a number of situations, including:

• Patient is not able or willing to undergo radical cystectomy • Patients with advanced bladder cancer without known nodal or metastatic disease • Preventing or treating symptoms caused by advanced bladder cancer

Radiation therapy is often given together with chemotherapy so that the radiation works better. When these are given together, it is called chemoradiation.

Radiation therapy does not hurt. Treatments are often given five days a week for several weeks, and each treatment lasts just a few minutes. Side effects depend on the strength of the radiation and can be worse when combined with chemotherapy. Some of these side effects can include skin irritation, nausea and vomiting, burning or pain when urinating, feeling the need to urinate often, blood in the urine or stool, diarrhea, fatigue (extreme tiredness), and low blood counts.

18 ADVANCED BLADDER CANCER A GUIDE FOR PATIENTS AND CAREGIVERS 19 Chemotherapy

Chemotherapy (or chemo) uses medication to treat cancer. When chemotherapy medicines are given systemically, they travel in the bloodstream and move throughout the body, with the purpose of killing cancer cells that are present anywhere in the body.

Chemo can be used as the main treatment for bladder cancer that has spread to other parts of the body. It can also be used as neoadjuvant therapy. That means it is given before surgery to treat potential spread of the cancer that is not visible on imaging prior to bladder removal. In the case of a large tumor that may invade other organs or tissues nearby, neoadjuvant therapy can help shrink a tumor, so it is easier to remove. It also helps lower the chance the tumor will come back.

20 ADVANCED BLADDER CANCER Chemo can be used along with radiation therapy to help it work better, and sometimes chemo is used after surgery or radiation as adjuvant therapy to kill cancer cells remaining after treatment.

Systemic chemotherapy medicines can be injected into a vein or muscle, or they can be given as a pill for a patient to take by mouth. Chemo is given in “cycles.” The patient will receive chemo treatment, rest for a certain amount of days, and receive another treatment. This cycle of treatment and rest usually lasts a few weeks. Common side effects can include nausea and vomiting, loss of appetite, hair loss, mouth sores, diarrhea, constipation, increased risk of infections, easy bleeding or bruising, and fatigue. Often there are ways healthcare providers can help prevent or lessen these side effects.

A GUIDE FOR PATIENTS AND CAREGIVERS 21 Immunotherapy

Immunotherapy is the use of medicine to “turn on” the person’s own immune system to recognize and destroy cancer cells.

Systemic Immunotherapy/Immune Checkpoint Inhibitors

Immune checkpoint inhibitors are a type of immunotherapy that can be used in bladder cancer, especially when the cancer is more advanced. These medicines are given through an intravenous (IV) infusion and travel throughout the body.

In a healthy immune system, the body has “checkpoints” to make sure certain immune cells are turned “on” or “off.” This allows the body to turn “on” and attack cancer cells or to turn “off” and not attack normal cells. Sometimes cancers cells have “off” switches, fooling the immune system into thinking they are normal, healthy cells. When this happens, the cancer cells grow out of control. Immune checkpoint inhibitors block those switches on the cancer cells, allowing the immune system to recognize and attack them.

Immunotherapy medicines are usually given every two or three weeks by IV infusion in a clinic. Common side effects of these medicines can include fatigue, nausea, fever, loss of appetite, urinary tract infections, rash, diarrhea, and constipation.

22 ADVANCED BLADDER CANCER A GUIDE FOR PATIENTS AND CAREGIVERS 23 Treating Advanced Bladder Cancer

As with any medical condition, each person with advanced bladder cancer should always consult their healthcare team for advice on treatment and management of their condition. In certain instances, your doctor may recommend treatment of the bladder with surgery and/or radiation therapy in addition to or instead of chemo or immunotherapy. As stage IV bladder cancer is rarely cured, patients are often advised to take part in a clinical trial.

Your Treatment Team

The treatment or care team for advanced bladder cancer can extend beyond those providing medical treatment and include not only doctors and nurses but other healthcare professionals as well. Your care team can include:

Radiation Medical Urologists Oncologists Oncologists

These doctors are Radiation therapy will These doctors treat surgeons who specialize be administered by cancer with in treating problems these doctors chemotherapy and in the urinary tract for immunotherapy men and women and prostate and genital organ problems in men; some can be urologic oncologists Pharmacists Nutritionists or or referred to as Dieticians surgical oncologists These licensed health These members of professionals can the team can help dispense medicines at a you with planning pharmacy, but they also proper nutrition help make sure the medicines and treatments prescribed by a doctor are safe and effective for patients

24 ADVANCED BLADDER CANCER Palliative Care Physician Nurse Physicians Assistants Practitioners

These doctors are These medical These nurses have experts in managing professionals practice advanced training and symptoms and medicine with work closely with end-of-life care doctors and may doctors to help specialize diagnose and manage in certain fields medical care

Physical and Cancer Social Workers Occupational Psychologists or Therapists Psychiatrists Trained professionals Trained professionals Specialists trained to who can help coordinate who are involved in assist with the mental care for the patient and physical rehabilitation and emotional impact family, assist with of cancer finding community resources and support services, and provide counseling and insurance guidance

A GUIDE FOR PATIENTS AND CAREGIVERS 25 Preparing for Your Visit with Your Treatment Team

With all of the information you will get at each appointment, it can be difficult to keep track of everything. Use the pages at the back of this guide to keep your questions, answers, and notes. As you prepare for each and every appointment, keep in mind the following tips:

• Ask a friend or family member to go with you to your appointment • Write down your questions in advance • Be sure to take notes or have the person with you take notes • Ask what the next steps are after this appointment so you can be prepared

“I would suggest going to all the appointments. The more you can attend, the more you can learn about it...and the more dialogue you can have with the treatment team to try to make your loved one feel as comfortable as possible.” —Jim Kaat

26 ADVANCED BLADDER CANCER You or your caregiver may ask your doctor if they mind if you record your conversation with them. This may be helpful to you in remembering important details after your appointment.

A GUIDE FOR PATIENTS AND CAREGIVERS 27 Coping with Cancer

When a person gets a diagnosis of advanced bladder cancer, there are a lot of changes that need to be considered, such as physical, emotional, and financial concerns. Each person copes

TRIED AND TRUE

Use what has helped you cope in the past, and if that doesn’t work, find a different way. You should also consider getting help from a professional.

ONE DAY AT A TIME

Try not to worry about the future. Coping with cancer can be less overwhelming if you work on getting through one day at a time and focus on making the most out of each day.

SUPPORT, SELF-HELP

Sometimes going to a support or self-help group can help you sort out your feelings. People find that talking about strong feelings helps with letting go of those feelings.

FIND THE RIGHT DOCTOR

Find a doctor you trust and who can be a partner in your treatment. Make sure that you ask about what to expect so you can prepare. Knowing about possible problems may make them easier to handle.

28 ADVANCED BLADDER CANCER with their cancer in different ways. Here are some suggestions to help you cope.

RELIGIOUS OR SPIRITUAL

Turning to religious or spiritual beliefs and practices, like prayer, may help you cope with cancer. If you do not identify with religion or spiritual practices, get support from any belief system you value.

JOURNAL

Keeping a journal helps you get your feelings and experiences out on paper and off your chest; it may help you process your cancer journey.

POSITIVITY

Try to look for good in your journey; try being hopeful instead of thinking the worst. Look for ways to focus on wellness and do what you can to stay as healthy as possible.

ACTIVITY

Getting out of the house and doing something you enjoy can help you focus on something other than your cancer. Exercise is also safe for most people with cancer and has the added benefit of helping with tiredness, nervousness, overall fitness, and improving your mood.

A GUIDE FOR PATIENTS AND CAREGIVERS 29 30 ADVANCED BLADDER CANCER Food and Nutrition

Nutrition is very important for people with cancer. Treatment can change the way you eat and may also change the way your body tolerates some foods and uses nutrients. It’s important to work with your cancer care team to determine what you need to eat in order to help you feel better, keep up your strength and energy, limit weight loss, tolerate any effects from your treatment, lower your risk of infection, and heal/recover faster.

Consider doing some of the following things to help prepare for treatment and cope with some of the possible side effects of treatment:

• Stock up on favorite foods and those that you know you’ve been able to eat even when sick • Cook dishes in advance and freeze them in meal-sized amounts • Ask family members or friends to either help with or take over shopping and cooking • Talk to your cancer care team about diet changes that can help with treatment side effects

Common eating problems from cancer treatment are appetite changes, constipation, diarrhea, fatigue, mouth dryness or thick saliva, mouth sores or sore throat, nausea, swallowing problems, taste and smell changes, and weight changes. Make sure to tell your cancer care team about any problems you have; they can help with a plan to treat the problem or keep it from getting worse.

For more tips on how to eat better, stay hydrated, and ease some of the symptoms related to your treatment, visit: https://bcan.org/eating-healthy-bladder-cancer/

A GUIDE FOR PATIENTS AND CAREGIVERS 31 Financial and Insurance Issues

Managing the costs of cancer treatment can feel overwhelming. Medications for cancer treatment can be expensive, but people can frequently get help with the cost of their medications from public and private programs. Some of the programs let people buy medications at lower prices, while other programs provide the medication for free to those who cannot pay for their medicine. Your cancer care team and organizations like the American Cancer Society can provide information about these programs.

Finding Resources for Patients and Caregivers

Just as cancer patients need to find ways to cope with their cancer journey, caregivers also need healthy ways to cope with the situation. Healthy coping skills include having supportive friends and family around.

In addition to the care team, it is helpful for both patients and caregivers to have other resources for support as you navigate advanced bladder cancer. You probably have many questions, from how to cope with symptoms to managing the cost of care. There are a variety of resources and patient advocacy organizations to help people with bladder cancer and caregivers navigate through treatment. These organizations can provide:

• Connections to other patients • Educational materials • Financial assistance • Free professional counseling services • Help with understanding insurance benefits • Help in locating clinical trials near you • Transportation assistance

32 ADVANCED BLADDER CANCER Below are some of the resources available:

Society of Urologic Oncology (SUO) https://suonet.org/resources/patients.aspx The SUO is a group of doctors who care for people with cancers of the genital area and urinary system. Their purpose is to discuss, develop, and implement ideas to improve care. In partnership with the Urology Care Foundation, the SUO has made available for download from their website several guides, fact sheets, and other educational materials for people with cancer.

American Bladder Cancer Society (ABCS) www.bladdercancersupport.org 888-413-2344 The function of the ABCS is to raise awareness of bladder cancer among the general public and the medical community; to advocate for the advance of research into a cure, treatment, early diagnosis, and quality of life issues of survivors; and to support bladder cancer survivors by providing community and by encouraging the concept of informed medical consumerism.

Bladder Cancer Advocacy Network (BCAN) www.BCAN.org 888-901-BCAN or 301-215-9099 BCAN is a national advocacy organization devoted to advancing bladder cancer research and supporting those impacted by the disease. They provide patient support, research, education, and awareness.

CancerCare www.cancercare.org 800-813-4673 CancerCare has professional oncology social workers who provide free emotional and practical support for people with cancer, caregivers, loved ones, and the bereaved through counseling and support groups, financial and co-pay assistance, and education, workshops, and community programs.

Cancer Support Community (CSC) www.cancersupportcommunity.org 888-793-9355 As the largest professionally led nonprofit network of cancer support worldwide, CSC is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. They provide information about bladder cancer, a cancer support helpline, support groups, assistance in finding a clinical trial, and Gilda’s Club locations across the country.

A GUIDE FOR PATIENTS AND CAREGIVERS 33 “When you’re caring for a loved one, sometimes you neglect taking care of yourself. It’s very important for the caregiver to also take care of themselves.”

—Jim Kaat

Major League Baseball trademarks and copyrights are used with permission of Major League Baseball. Visit MLB.com.

34 ADVANCED BLADDER CANCER Conclusion – Speak Up!

A diagnosis of advanced bladder cancer is challenging, but reading this guidebook is a positive step toward educating yourself about advanced bladder cancer and treatment options. You may still have many more questions, so it is important to speak up and ask lots of questions of your healthcare team. They want to help you understand your options and resources and make sure you are as comfortable as possible as you navigate this journey.

Your Notes

Use the following pages to keep all of your questions and answers in one place.

Questions for Your Healthcare Team

A GUIDE FOR PATIENTS AND CAREGIVERS 35 Notes

36 ADVANCED BLADDER CANCER Notes

A GUIDE FOR PATIENTS AND CAREGIVERS 37 Glossary

Genitourinary: relating to the genital and urinary organs or functions

Intravenous (IV) infusion: a way of giving a medicine or other substance through a needle or tube inserted into a vein

Invasive: having a tendency to spread

Lymph nodes: small round or bean-shaped bumps that can’t be felt unless they become swollen

Squamous cells: flat cells that looks like fish scales under a microscope; they are found in several types of tissue in the body, including the lining of hollow organs such as the bladder, kidneys, uterus, and cervix

Urethra: the tube that carries urine from the bladder to the outside of the body

Special Thanks to the SUO Education Committee

Seth Paul Lerner, MD (Committee Chair) Brian F. Chapin, MD Peter Earl Clark, MD Eugene K. Lee, MD, FACS Sima Prabodh Porten, MD, MPH Sarah P. Psutka, MD, MS

On-Camera Physicians in Companion Video (see back cover)

Michael S. Cookson, MD, MMHC, FACS Sima Prabodh Porten, MD, MPH

38 ADVANCED BLADDER CANCER Disclaimer

This guidebook is intended for informational purposes only, with the understanding that no one should rely upon this information as the basis for medical decisions. Anyone requiring medical or other health care should consult a medical or healthcare professional. Any actions based on the information provided are entirely the responsibility of the user and of any medical or other healthcare professionals who are involved in such actions.

The Society of Urologic Oncology (SUO), Bristol Myers Squibb, producers Conrad & Associates, LLC and Alan Weiss Productions, Breck & Company Inc., and guidebook author Lisa Breck have used reasonable efforts to include timely and accurate information in this guidebook. SUO, Bristol Myers Squibb, the producers, and the writer make no representations or warranties, express or implied, regarding the accuracy or completeness of the information provided herein and specifically disclaim any liability, express or implied, in connection therewith.

A GUIDE FOR PATIENTS AND CAREGIVERS 39 Program Partners

Presented by the Society of Urologic Oncology

The Society of Urologic Oncology (SUO) was founded in 1984 for the purpose of bringing together healthcare professionals to discuss, develop, and implement ideas to improve care for people with malignant genitourinary diseases like bladder cancer. The SUO hosts and sponsors programs designed to provide specific expertise in urologic oncology. The SUO’s research initiatives involve clinical trials through the SUO Clinical Trials Consortium.

The SUO’s primary objectives are to:

• Encourage research and teaching in urologic oncology • Bring awareness of urologic oncology to the larger medical profession • Invite urologists into a society whose work is focused in malignant disease • Be the most qualified organization on matters of urologic oncology • Create standards for professional training in urologic oncology

Funding Support Provided by Bristol Myers Squibb

Bristol Myers Squibb is a leading global biopharma company focused on discovering, developing, and delivering innovative medicines for patients with serious diseases in areas including oncology, hematology, immunology, cardiovascular, and neuroscience. Our employees work every day to transform patients’ lives through science.

Scan this QR code to watch the companion documentary, featuring JIM KAAT sharing his family’s experience with advanced bladder cancer.

Or watch the video online at: https://suonet.org/resources/patients.aspx