UNDERSTANDING BLADDER CANCER Learn About Your Treatment Options
After Your Diagnosis If your doctor has told you that you have bladder cancer, you likely have many questions and concerns. Learning about your diagnosis can help you feel more in control. You may want to know more about the likely course of your disease, and how it may be treated. Know that when bladder cancer is found at an early stage, survival rates tend to be very good. There are many types of treatment for bladder cancer. Soon, you ll be asked to make choices about your treatment. Your healthcare team and this book can help you learn more about what s ahead. 2
Working with Your Healthcare Team Your healthcare team will explain treatment options and guide you through cancer treatment. They will help you understand what the treatment options are, along with their benefits and risks. Ask your team any questions you have. Tell the healthcare team about your needs and concerns. This helps them give you better care. Your team may include these kinds of healthcare professionals, and maybe others: Urologist (a doctor specializing in the urinary tract) Nurses Oncologist (a doctor who specializes in the treatment of cancer) Different types of technicians in various specialties Your Evaluation Cancer may have first been suspected when you or your doctor found blood in your urine. You may then have had one or more of these tests: Urine cytology. A sample of urine is viewed. It is checked for cancer cells. Urine culture. A sample of urine is tested by a lab for bacteria. CT urogram. A series of special images are taken of the bladder, ureters, and kidneys. Other parts of the abdomen may be included in the images. Intravenous contrast material is used. Cystoscopy. A magnifying instrument called a cystoscope is used. The scope is put through the urethra into the bladder. The inside of the bladder is then examined closely. During the test, tissue samples (biopsy) may be taken and examined for cancer cells. These tests may also be done to learn how far bladder cancer has grown and spread (the cancer stage). 3
A Look at the Bladder The bladder is part of the urinary tract. The urinary tract rids the body of liquid waste. With bladder cancer, certain cells in the urinary tract have changed in abnormal ways. The Urinary Tract The urinary tract has many parts. Two kidneys filter waste products and extra water from the blood, creating liquid waste (urine). Urine travels from the kidneys through two tubes called the ureters. The ureters end in the bladder, which stores urine. Urine then travels from the bladder through the urethra and out of the body. In men, the prostate (part of the male reproductive system) wraps around the urethra right below the bladder. In women, the uterus (part of the female reproductive system) sits right behind the bladder. A Lining of Special Cells Most of the urinary tract has a layer of cells called transitional cells (or urothelial cells). They line the bladder, ureters, the collecting system of the kidneys, and part of the urethra. Cancer in the urinary tract most often forms in these cells. A small fraction of bladder cancers start in other types of cells. If you have been diagnosed with a different type of bladder cancer, your doctor will tell you more. Uterus (in women) Bladder Urethra Kidney Ureter Lymph nodes Prostate (in men) 4
When Bladder Cancer Forms Cancer is a disease in which cells begin changing and growing out of control. The cells may form a lump of tissue (tumor). In time, the cancer cells destroy healthy tissue. What Causes Bladder Cancer? Why cells become cancerous is often not clear. Bladder cancer is strongly linked to cigarette smoking. Chances of having cancer go up the longer someone smokes and the more he or she smokes. But nonsmokers can also get bladder cancer. Bladder lining (transitional cells) Papillary tumor Sessile tumor Carcinoma in situ Layers of the bladder wall Connective Muscle Fat tissue Forms of Bladder Cancer More than one tumor or type of tumor can be present at the same time. Papillary tumors stick out from the bladder lining on a stalk. They tend to grow out of the bladder wall, instead of deeper into its layers. Sessile tumors lie flat against the bladder lining. Sessile tumors are more likely than papillary tumors to grow deeper into the layers of the bladder wall. Carcinoma in situ (CIS) is a cancerous patch of bladder lining. The patch may look almost normal. It can also look velvety and red. 5
Staging and Grading Once cancer has been diagnosed, the next step is to choose the best way to treat it. To help do this, your doctor checks the cancer stage and grade. Stage: How Much the Cancer Has Grown and Spread Bladder cancer begins in the bladder lining. As the tumor gets larger, it may grow into (invade) deeper layers of the bladder. It may also grow into nearby organs. Cells can also break off from the main tumor and enter the bloodstream or lymph nodes. The cells are then carried to other areas of the body, where a new tumor may form. This is called metastasis. The cancer stage is based on where the cancer is located, and how much it has grown and spread. Non-Muscle-Invasive (Superficial) Stage The tumor is confined to the lining and connective tissue of the bladder. Bladder lining Tumor Muscle-Invasive Stage The tumor has begun to grow into the muscle or fat layers of the bladder. Connective tissue Muscle Fat Metastatic Stage Cancer cells have spread to other parts of the body. Cancer cells A simplified staging system is described here. Your doctor will likely use a more detailed system. He or she may also use slightly different words to describe the stages. 6
Grade: What the Cancer Cells Look Like The grade of bladder cancer is found by viewing cancer cells under a microscope. The grade is based on what the cancer cells look like and how many cells are multiplying. Knowing the grade can help your doctor predict how fast the cancer will grow and spread. Low Grade Low-grade cells look relatively normal. A few of the cells vary in size. Some of the cells are multiplying. This is described as less aggressive cancer. Choosing the Right Treatment High Grade High-grade cells vary widely in size. They are very uneven in shape. Almost all of the cells are multiplying. This is known as more aggressive cancer. Knowing the stage and grade helps your doctor decide which methods will best treat your cancer. cer. Below are some treatment options for bladder cancer. They are discussed in more detail on later pages in this booklet. Transurethral resection (TUR): See page 8. Intravesical therapy: See page 9. Cystectomy: See page 10. Chemotherapy: See page 13. Radiation therapy: See page 13. 7
Transurethral Resection (TUR) If the cancer is in an early stage (superficial), it may be removed using cystoscopy. Removal of a tumor this way is known as transurethral resection (TUR). Most of the time, tissue removed during TUR can be studied to see if more treatment is needed. Removing a Tumor TUR is usually done in a hospital as an outpatient procedure. If the tumor is large, you may be kept in the hospital overnight. You will be given anesthesia so you don t feel pain during the procedure. This may be regional anesthesia, which numbs just the lower part of your body. Or, it may be general anesthesia, which puts you into a state like deep sleep through the procedure. During the Procedure A rigid cystoscope is inserted into your bladder through your urethra. The bladder is then examined. If tumors are found, they may be removed using a cutting tool. In some cases, a laser is used to burn a tumor away. A biopsy of both tumor and normal-looking tissue may be taken. These samples are looked at under a microscope for cancer cells. Tumor After the Procedure After the procedure, you may have a catheter (flexible tube) in your bladder to drain urine. It may stay in place for a few days. Bladder tumors can come back (recur) after treatment. To be sure that all cancer cells are destroyed, TUR may be followed by other types of treatment, such as intravesical therapy. Bladder Urethra Risks and Complications These may include: Bleeding Infection Injury to the bladder Cystoscope 8
Intravesical Therapy Certain types of bladder tumors are hard to remove using surgical procedures like TUR alone. In these cases, special medications may be placed into the bladder. This is called intravesical therapy. This may be an option if you have a hard-to-remove tumor, such as CIS. It may also be done after TUR to help keep the cancer from coming back. Medication Inside Your Bladder Intravesical therapy is usually done in the doctor s office. A catheter is used to fill the bladder with liquid medication. This may be a liquid chemotherapy drug, which kills cancer cells. Or, it may be BCG (a type of bacterium). BCG encourages the body s immune system to attack the cancer cells. After Treatment After your weekly treatments, you may be given regular follow-up treatments for a year or more. These follow-up treatments help keep the cancer from coming back. After the treatments are over, cystoscopy and urine cytology (see page 3) may be done every 3 to 6 months to check for cancer cells. Medication in bladder Catheter During Treatment You re asked to hold the medication in your bladder for up to 2 hours, then urinate. If BCG is used, your doctor may advise you to pour bleach into your toilet after you urinate. This kills any leftover bacteria. Intravesical therapy is usually given weekly for 6 weeks. Call your doctor right away if you have a fever (100.4ºF or 38ºC or higher) at any time during treatment with BCG. Risks and Complications These may include: Bladder irritation or infection Blood in urine Flulike symptoms, such as chills or mild fever Rash Scarring of the bladder Systemic infection 9
Cystectomy Cystectomy is the surgical removal of the bladder. This surgery may be suggested for high-grade bladder cancer or for muscle-invasive or metastatic bladder cancer. Your doctor can discuss the risks and benefits of cystectomy with you. If you decide to have surgery, the surgeon can explain the procedure and answer your questions. Preparing for Surgery Prepare for surgery as directed. Be sure to: Stop eating and drinking before surgery as instructed. Take antibiotics as directed, if they are prescribed. Follow instructions for clearing your bowel before surgery. This may involve taking a prescribed laxative medication ahead of time. Removing the Bladder The surgery is done in the hospital. You ll be given general anesthesia, which puts you in a state like deep sleep throughout the procedure. Cystectomy may be done as open surgery, with a large incision. Or, it may be done as a minimally invasive procedure with small incisions. First, the area around your bladder is examined to see if the cancer has spread. If it has, the procedure may be stopped. If it is safe to proceed, the bladder and certain nearby organs are removed. Bladder Urethra In men, the bladder, lymph nodes, prostate, and urethra may be removed. Uterus Lymph nodes Prostate Cervix Bladder Urethra Lymph nodes Vagina 10 In women, the bladder, uterus, cervix, lymph nodes, urethra, and part of the vagina may be removed.
Creating a New Path for Urine When the bladder is removed, another way to store and release urine is needed. The bladder is usually replaced using one of three types of reconstruction. A new bladder (neobladder) may be formed from a piece of intestine. This is attached to the urethra, allowing urine to follow the usual path out of the body. People who have this type of bladder no longer have signals that they need to urinate. So, they must urinate on a schedule. An ileal conduit may be created. This is a piece of intestine that carries urine from the ureters to a new opening near the bellybutton called a stoma. A lightweight, leakproof bag is placed outside the stoma to collect urine. A pouch can be formed from intestine to store urine. The pouch is connected to a stoma. A catheter is placed into the stoma to drain urine from the pouch. No collection bag is needed. This is known as a continent diversion. Urethra New bladder A new bladder is formed from intestine. It stores urine until it s released through the urethra. Stoma Section of intestine An ileal conduit directs urine through a stoma. Urine is stored in a collection bag outside the body. Risks and Complications These may include: Infection Bleeding, requiring a transfusion Blockage of intestine Nerve damage, which can cause sexual dysfunction Blood clot Wound opening Death Stoma Pouch A pouch formed from intestine stores urine. A catheter is placed into the stoma to drain the pouch. 11
After Cystectomy After your surgery, you will stay in the hospital for about a week to recover. During this time, you will learn how to care for your bladder reconstruction. Adjusting to Your Bladder Replacement If you have a stoma, a specially trained nurse can show you how to use and care for it. If you have a pouch or new bladder, an indwelling catheter may help drain urine for up to a month. As you heal, your stoma is checked to be sure no problems develop. Follow-Up Return for regular follow-up visits during your recovery. These help ensure that you are healing well. They also let your doctor confirm that your new urinary tract is working properly. Every few months, tests are done to be sure you remain free of cancer. These tests may include blood tests, chest x-rays, and imaging tests such as CT or MRI. When to Call the Doctor Call if you have any of these problems: Fever of 100.4 F (38 C) or higher Drainage from the incision or stoma Swelling of the abdomen, legs, or feet Shortness of breath Vomiting 12
Chemotherapy and Radiation Therapy Chemotherapy is medication that destroys cancer cells. Radiation therapy uses beams of energy to destroy cancer cells. These treatments have specific roles in treating bladder cancer. Chemotherapy Chemotherapy is often used before or after cystectomy. It is also used for metastatic bladder cancer. Chemotherapy is given at regular intervals for several months. During treatment: Medication is sent into the veins through an intravenous (IV) line. Chemotherapy may be given in the hospital. Or, it may be given in the doctor s office or an outpatient center. After treatment: Side effects from chemotherapy are common. After each treatment, you ll probably have to take it easy while your body recovers. Follow-up tests may be done regularly. Radiation Therapy Radiation treatments may be used if cystectomy is not a good option. Radiation therapy can also be used to treat symptoms. It is often used along with chemotherapy. During treatment: Short doses of radiation are aimed at areas being treated. Each treatment lasts a few minutes. Treatments are given once a day, 4 to 5 days a week, for up to 7 weeks. After treatment: You can return to your normal activities soon after each visit. Side effects may persist after treatment has ended. But these usually clear up within a few weeks. Short-Term Side Effects of Chemotherapy These can include: Severe infection (get medical care right away if you develop a fever over 100.4ºF or 38ºC) Painful mouth sores Nausea and vomiting Fatigue (low energy) Numbness and tingling of palms and feet Weight loss Hair loss Short-Term Side Effects of Radiation These can include: Irritated skin around the radiation site Bladder irritation Fatigue Nausea and vomiting Diarrhea Effects of low blood counts, including bruising and increased risk of infection 13
Taking an Active Role You are an important part of your healthcare team. Keep your appointments. Share information with your doctor. Even after your treatment is over, return to your doctor for regular checkups. If you smoke, do the best you can to quit. Quitting smoking is one of the best ways you can help yourself recover from bladder cancer and keep it from coming back. Keep in Touch with Your Doctor During and after treatment, keep in touch with your doctor. Have your doctor address any questions or concerns you have. You will likely continue to have regular checkups. These checkups may include blood tests, x-ray tests, and cystoscopy. These are done every few months for several years. Stop Smoking Smoking is a major risk factor for bladder cancer. Smoking reduces the chances that your treatment will work. It also makes the cancer more likely to come back. If you smoke, now is the time to quit. Ask your healthcare team for help giving up smoking for good. They may recommend aids, such as medications, to help you quit. A stop-smoking program or support group can also be very helpful. Tell family and friends that you re quitting and ask them to support you. Quitting isn t easy, but your health and life are worth it. 14
Your Emotions Cancer and its treatment can leave you feeling drained. Anger, frustration, fear, depression, and denial are common. Although these feelings are normal, don t let them overwhelm you. Take control by talking with members of your healthcare team. They can help you manage your emotions. Also, stay close to your loved ones, who can help you through tough times. Accepting Your Body Cancer can change the way you see yourself. During treatment, it may seem as if your body has betrayed you. You may be frustrated by feeling tired and sick. If you ve had a cystectomy, you may feel scared or angry about the changes in your body. Cancer and its treatments can affect how you feel about your sexuality. Many people with cancer have these feelings. Your healthcare team can help you find ways to cope with and feel good about your body. Looking Toward the Future The outcome of your treatment can t be guaranteed. Many cases of bladder cancer can be managed, though. Don t let cancer stop you from taking part in life. As you go through treatment and recovery, spend time with loved ones and do things you enjoy, as much as you can. Notes to Family and Friends Your loved one may feel depressed, frustrated, or scared. This is common after a cancer diagnosis. Support your loved one and do what you can to help. Think about joining a support group for people who have family or friends with cancer. Know that your loved one may have good days and bad days. This is normal during cancer treatment. If your loved one smokes, do what you can to help him or her quit. 15
Getting Support You can find help to get through rough times. Your healthcare team can guide you. Your family and friends can offer support. You may also want to join a support group. These groups let you meet other people who are dealing with cancer. Investigate the resources below. Also available in Spanish TAKE OUR PATIENT SURVEY. Help us help other patients. Please visit www.kramesurvey.com to provide your feedback on this booklet. This booklet is not intended as a substitute for professional medical care. Only your doctor can diagnose and treat a medical problem. 2015 The StayWell Company, LLC. www.kramesstore.com 800.333.3032 All rights reserved. Made in the USA. Resources American Cancer Society www.cancer.org 800-227-2345 Bladder Cancer Advocacy Network www.bcan.org 888-901-2226 United Ostomy Associations of America www.ostomy.org 800-826-0826 Urology Care Foundation www.urologyhealth.org 800-828-7866 12236 1509