Bladder Cancer Patient Handbook

Transcription

1 Page 1 of 15 Bladder Cancer Patient Handbook Institute for Prostate and Urologic Cancers Contents Welcome to Urology and Institute for Prostate and Urologic Cancers... 2 Your Care Team... 3 Clinic Information... 4 Bladder Cancer and Treatment... 5 Resources Glossary... 12

2 Page 2 of 15 Welcome to Urology and Institute for Prostate and Urologic Cancers It is overwhelming to receive the news that you have bladder cancer. This handbook will help you understand this disease as well as learn about treatment options. Most important, this handbook will give you the information you need to take your first steps toward managing your cancer. You and your loved ones can learn what you need to know to make the best decisions for you. You are not alone. Your medical care team will educate and support you throughout your treatment. This is your handbook, so please write down questions and highlight details as you wish. If possible, bring it with you to all of your appointments. The entire staff hopes that you will remain connected with us. We are here to help you live a full and balanced life after diagnosis. Thank you for choosing University of Minnesota Health for your care. The Staff of the Urology Department, University of Minnesota Health

3 Page 3 of 15 Your Care Team We would like to tell you something about the role of each member of your care team. Your care team will help you in many ways and may include: Urologists: Doctors who treat the urinary and male reproductive systems. Radiation oncologists: Doctors who treat cancer with radiation therapy. Medical oncologists: Doctors who treat cancer with medicines such as chemotherapy or hormones. Physician s assistants (PAs): They have advanced medical training and may perform exams and treat you. They work with a doctor to provide your care. Medical assistants: They help the provider in clinic. Dietitians: They can help you make a plan for healthy eating to improve your general health. Social workers: They help you with emotional, social and financial issues. They offer resources and community support. Financial counselors: They can help you with financial questions and issues. Supportive Cancer Care: They focus on the physical, emotional and spiritual needs of people with cancer. Their goal is to improve the quality of life for cancer patients and their families. Care coordinators: RNs who help plan your care and assist your family.

4 Page 4 of 15 Clinic Information Urology and Institute for Prostate and Urologic Cancers Address: University of Minnesota Health Clinics and Surgery Center 909 Fulton St. SE, 4th Floor Minneapolis, MN Fax: Clinic hours: Monday Friday: 7 a.m. to 7 p.m. Saturday: 8 a.m. to 12 p.m. Phone: Scheduling: Choose 1 Nurse Line: Choose 3 Call Monday Friday, 8 a.m. to 5 p.m. After hours, call Ridges Cancer Clinic Address: Fairview Ridges Specialty Center Fairview Dr., Suite 200 Burnsville, MN Clinic hours: Monday Friday: 8 a.m. to 4:30 p.m. Phone: Urology and Institute for Prostate and Urologic Cancers Go to University of Minnesota Health Clinics and Surgery Center. Our clinic is on the 4th floor. Valet parking Enter the main arrival plaza from Fulton Street. Valet costs $6 for each visit. No tips are accepted. Self-parking Enter the main arrival plaza from Fulton Street. From there, a parking attendant will direct you to the best parking option. To get the best rate, bring your parking ticket with you and pay for parking before you leave the Center. Getting to and from the main hospital Use the Patient and Family Shuttle to travel between the Center and the main hospital. The shuttle picks up and drops off at the main entrance of each building. Hours: Monday through Friday, 5 a.m. to 8 p.m. Saturday, 5:30 a.m. to 1 p.m. Ridges Cancer Clinic Parking The patient parking ramp is on the south side of the Fairview Ridges Hospital. Parking is free.

5 Page 5 of 15 Bladder Cancer and Treatment What You Need to Know What is a bladder? The bladder is a hollow organ in your lower belly (abdomen) that stores urine. Urine is made by the kidneys and then carried to the bladder through tubes called ureters. The bladder stores urine before it leaves the body through the urethra. What are the risk factors for bladder cancer? Known risks are: Smoking. Being exposed to certain substances at work, such as rubber, some dyes and textiles, paint, and hairdressing products. Eating a diet high in fried meats and fat. Being older, male or white. Kidney Bladder What is bladder cancer? Urethra Ureter What are the symptoms? Blood in the urine (rusty to bright red in color). A need to urinate (pee) often or feeling the need to urinate without being able to do so. Pain when you urinate. Lower back pain. Bladder cancer is made up of cells that do not grow normally. The cells divide and make new cells that the body does not need. These cells form a mass of tissue, or tumor, in the bladder. The wall of the bladder is made up of layers. Cancer begins in the inner layer and may grow into the bladder wall. Most bladder cancers start in the inner lining of the bladder and have not invaded the bladder muscle at the time they are found. If the cancer has grown into the wall of the bladder, your treatment will be more aggressive.

6 Page 6 of 15 How is bladder cancer diagnosed? The following tests and exams may be used to find cancer: CT scan (CAT scan): This machine is a computer linked to an X-ray machine. It takes a series of pictures that allow us to look inside the body. The scan creates images of the body in cross sections, much like slices of bread. We may inject a fluid called contrast into one of your veins. This helps us see the organs or tissues better. Urine test: You give a urine sample. The lab checks the color, sugar, protein, and blood cells. The lab also looks for any abnormal cells. Internal exam: The doctor inserts gloved fingers into the vagina or rectum (if the patient is male) to feel for lumps. Cystoscopy: This test looks for problems inside the bladder and urethra. First, we numb the area with medicine. Then we insert a thin tube through the urethra into the bladder. The tube has a tiny lens and light on the end (cystoscope). Biopsy: A biopsy for bladder cancer is usually done during cystoscopy while you are sedated or asleep. The scope also has a tool to remove tissue samples. These are checked under a microscope for signs of cancer. Sometimes we are able to remove the entire tumor during a biopsy. What are the stages of bladder cancer? If we find cancer cells, more tests will be done to see if the cancer has spread. This is called staging. Staging helps guide treatment and gives you some idea of what to expect in the future. The stages for bladder cancer are: Stage 0: Tumor is only in the bladder lining. Stage 1: Tumor is in the bladder lining, but does not reach the muscle layer. Stage 2: Tumor is in the muscle layer of the bladder. Stage 3: Tumor goes past the muscle layer into tissue around the bladder. Stage 4: Tumor has spread to nearby lymph nodes or to distant sites (metastatic disease). Stage 3 Stage 2 Stage 1 Stage 0 Stage 4 Tumors may spread into nearby areas, including the prostate, rectum, ureters, uterus or vagina (see drawings on page 8). Cancer may also spread to lymph nodes in the pelvis, or to other parts of the body, such as the bones, liver or lungs.

7 Page 7 of 15 How do you form a treatment plan? Treatment depends on the stage of the cancer, your symptoms and general health. Some newer treatments are being tested in clinical trials. Your plan may include one or more of the treatments described below. Surgery to remove the tumor (TURB, or transurethral resection of bladder) How is it done? A cystoscope (a thin, lighted tube) is inserted into the bladder through the urethra. A tool with a small wire loop on the end removes or burns away the tumor. TURB in women. Side effects Problems are unusual, but may include: Infection of the urinary tract (UTI) or bladder. We may give you antibiotics to help prevent this. Drinking extra fluids will help reduce your risk of an infection. Trouble passing urine. You will usually have a catheter (bladder tube) for the first 24 hours after surgery. Another surgery if: ȤȤ The tumor is not completely gone, or it returns. ȤȤ The urethra, bladder or bladder wall are damaged during surgery. TURB in men.

8 Page 8 of 15 Surgery to remove the bladder (radical cystectomy) What is it? The bladder and lymph nodes are removed. This surgery may be done when the bladder cancer invades the muscle wall, or when a surface cancer involves a large part of the bladder. Bladder Prostate Seminal vesicles Men with late-stage cancer may have the prostate and seminal vesicles removed. Sometimes, the cancer has spread outside the bladder and cannot be totally removed. In this case, we may remove the bladder to reduce symptoms. What should I expect? This surgery is usually done through an incision (cut) in the belly (abdomen). In some cases, we will do laparoscopic surgery. This surgery uses several smaller cuts and long, thin instruments. One of these has a tiny video camera on the end. Laparoscopic surgery may also be done with a robot attached to the instruments. Side effects: Bleeding. Infections. Urine leaking. Blocked urine flow. Sexual side effects. If your bladder is removed Uterus Ovaries When the bladder must be removed, the surgeon creates another way for urine to leave the body. The three options are ileal conduit, urinary pouch and neobladder. These surgeries are discussed in detail in the booklet, Bladder Cancer Surgery. Bladder Vagina Women with late-stage cancer may have the uterus, ovaries and part of the vagina removed.

9 Page 9 of 15 Radiation therapy What is it? We uses high-energy X-rays to kill or stop cancer cells from growing. What should I expect? A cat scan shows images of the area to help us know where to direct the X-ray beams. Side effects: Diarrhea (loose or watery stools). Burning when you urinate (pee) or going more often. Blood in the urine. Erectile dysfunction (problems getting or keeping an erection). Some loss of pubic hair. Feeling tired. Chemotherapy What is it? We use drugs to stop the growth of cancer cells. The drugs kill the cells or stop them from dividing. What should I expect? The drugs are given two ways: through the bloodstream or locally. The drugs fight cancer cells throughout the body when they are taken by mouth or given in a shot. The drugs kill cancer cells directly by being placed into the bladder through a small tube. The form of chemotherapy you receive will depend on the type and stage of the cancer. Side effects: Vomiting (throwing up). Diarrhea (loose or watery stools). Feeling tired. Increased risk of infection. Bloating or gas pains. Bleeding or scarring of the bladder or rectum. Trouble passing urine. Irritated rectum or an urgent need to pass stool.

10 Page 10 of 15 Immunotherapy What is it? You are given medicine that triggers your immune system to attack and kill the cancer cells. The most common chemotherapy drug used in this treatment is called BCG. This consists of bacteria that we inactivate before placing in your bladder. What should I expect? The medicine is sent into the bladder through a Foley catheter (bladder tube). A nurse gives the treatments in the clinic. Treatment is once a week for 6 weeks. In some cases, it will be given for another 3 weeks. Booster treatments are given every 6 months for up to 2 years. During each treatment: You will lie down. First, a numbing gel is put into the urethra. Then a small tube (catheter) is placed in your bladder through your urethra. As the medicine fills your bladder, you may feel pressure. In order to work, the medicine must cover the inside of the bladder. After your bladder is full of medicine, you will go home and wait two hours, then empty your bladder. What are the side effects? Side effects tend to increase with each treatment. You may not notice any until after the third treatment. Common side effects include: Irritated bladder. This will last 1 to 3 days after a treatment. The urge to urinate (pee) often. Blood in the urine. Bladder infection. Other side effects: Fever, chills and fatigue. Flu-like symptoms. Symptoms of infection, including: ȤȤ High fever, over 103 F (39 C) when taken under the tongue. ȤȤ Night sweats. ȤȤ Feeling very tired. ȤȤ Fever above 101 F (38 C) that lasts for more than 2 days. Call your care team right away if these side effects last more than 48 hours or get worse. Be sure to keep all follow-up appointments. When the weeks of therapy are finished, you will have a biopsy and cystoscopy (page 6) to check the results.

11 Page 11 of 15 Resources Websites American Cancer Society American Urological Association (AUA) Bladder Cancer Advocacy Network Bladder Cancer Webcafe International Ostomy Association Books Parallel Journeys: A Spirited Approach to Coping and Living with Cancer, by Dr. Larry Lachman and Ric Masten (2003) 100 Q&A About Bladder Cancer (100 Questions &Answers) by Pamela Ellsworth, John A. Heaney and Oliver Gill (2002, second edition 2008) The Guide to Living with Bladder Cancer by Mark P. Schoenberg, M.D., F.A.C.S. and the faculty and staff of the Johns Hopkins Genitourinary Oncology Group Medline Plus National Cancer Institute United Ostomy Associations of America (UOAA) Urology Department

12 Page 12 of 15 Glossary A B Adjuvant therapy Treatment given after the main treatment. The purpose is to destroy cancer cells that may remain. Alkaline phosphatase An enzyme made by bone and liver cells. Blood levels of alkaline phosphatase often go up when cancer has spread to the bones or liver. Anesthetic A drug that causes a loss of feeling or numbness. It is used during some surgeries. Antibody A protein made by the immune system. It enters the blood to defend against foreign agents, such as bacteria. Anti-cancer drug A drug that attacks cancer cells. Anus The opening at the lower end of the rectum through which solid body waste passes. Artificial sphincter Prosthesis or device used to treat loss of bowel control. Atypical Not usual; abnormal. Refers to the way cancer or pre-cancer cells appear. C Benign Not cancer. A term for a tumor that is usually not life-threatening and does not spread to other parts of the body. Biopsy The removal of a tissue sample to see whether cancer cells are present. Bladder The hollow organ that stores urine. Bone scan Pictures that show where in the bones the cancer may have spread. Cancer A tumor with abnormal cells that grow and divide without control. Carcinoma Common type of cancer. A malignant tumor that grows in the surface tissues of an organ or the skin. Catheter (urinary) A thin, flexible tube through which urine leaves the body. Cell The basic unit of the body. All tissue is made of cells. Chemotherapy Cancer drugs that destroy cancer cells.

13 Page 13 of 15 D E F I Clinical trials Studies done on patients to test a new treatment. Conformal proton beam radiation Radiation therapy using protons. Cytoscope A thin tube with a light for viewing the bladder. May be used to looks for cancer cells. With added tools, it may do a biopsy or remove cancer cells. Cystoscopy Exam of the bladder using a cystoscope. This device is a thin tube with a tiny camera and light. Downsizing Decrease in the size of a tumor. Early detection Finding cancer cells at an early stage, before they have grown or spread to other sites. Erectile dysfunction The inability to have or keep an erection. See Impotence. External beam radiation Radiation therapy that uses rays from a source outside the body. Foley catheter A catheter with a balloon at the end that holds the catheter in place. A Foley is inserted through the urethra to drain urine after bladder surgery. Immunotherapy Treatment using medicine that triggers the immune system to attack cancer cells. L M Impotence The inability to have or keep an erection. See Erectile Dysfunction. Incontinence Loss of control of urine. Investigational therapy The study of a therapy while using it to treat disease. Laparoscope A tube with a light on the end. It is inserted into the body and allows the doctor to see internal organs. Laparoscopic lymph node dissection Removal of nodes to look for cancer. This is done through small incisions with a laparoscope. Libido Sex drive. Lymph The fluid collected from body tissues and returned to the blood by the lymphatic system. The lymph system drains waste from cells. Lymphadenectomy Removing lymph nodes by surgery to look for cancer cells. Lymph nodes Small bean shaped structures scattered along the vessels of the lymphatic system. Also called lymph glands. They remove waste, which protects the body from infection. Malignant Cancerous. Metastasis The spread of cancer cells from their site of origin to other areas of the body. The cells spread through the lymph or blood systems.

14 Page 14 of 15 N O Neoadjuvant therapy Therapy given before the main treatment in order to improve the results. Oncologist A doctor who treats cancer. Ovaries The two female organs that produce sex hormones and store eggs for fertilization. P Palliative treatment Therapy to relieve symptoms but not intended to cure disease or extend life. Pathologist A doctor who diagnoses disease by studying cell samples. Perineum In men, it is the area between the scrotum and the anus. In women, it is the area between the vaginal opening and the anus. Pituitary gland A gland located at the base of the brain. It controls the release of other hormones in the body. Primary cancer Cancer that began at a specific place in the body. It did not spread there from another site. Primary treatment The first and usually the most important treatment. Prognosis A prediction of the course of a disease. Prostate gland A round gland about the size of a walnut. It sits below the bladder and holds some of the seminal fluid. R S Prostatectomy Surgery to remove the prostate gland. Radiation therapy Treatment in which high energy rays kill or shrink cancer cells. Radical cystectomy Removal of the bladder. This requires creating another way for urine to leave the body. Sometimes involves removal of nearby organs. Rectum Lower part of the large intestine leading to the anus. Recurrence Cancer that returns after treatment. Refractory A disease that can no longer be controlled by the treatment program. Remission When all or most of the signs of cancer have gone away. Screening Tests to find disease, such as cancer, before there are symptoms. Scrotum Pouch of skin that holds the testicles. Semen Fluid released during sexual climax. It contains sperm and seminal fluid. Seminal vesicles Pouches located above the prostate that store semen. Stage Describes the size and extent of the spread of cancer.

15 Page 15 of 15 T Staging Testing to determine how far the cancer has spread. The results are used to guide treatment. Testicles (testes) The male glands found in the scrotum. They make sperm and testosterone. V Vagina Female organ that connects to the uterus and through which blood flows during a period. It is muscular and expands during sex or childbirth. Transurethral resection of the bladder tumor (TURBT) Surgery to remove cancer cells from the bladder while leaving the bladder intact. Tumor Over growth of cells that create a lump or mass of tissue. This mass may or may not be a cancer. U Ureters Tubes that carry urine from the kidneys to the bladder. Urethra The tube running from the bladder to the outside of the body. Urine flows through it. Urologist A doctor who treats diseases of the sex organs in men and urinary organs in both men and women. Uterus Female organ where embryos grow into babies until birth. It connects to the vagina. For informational purposes only. Not to replace the advice of your health care provider. Developed in collaboration with University of Minnesota Physicians. Images: Stages of cancer Sebastian Kaulitzki, Male and female reproductive systems Andreus Dreamstime.com. Text copyright 2012 Fairview Health Services. All rights reserved. SMARTworks REV 02/16.