Your Pathway of Care:

21556 PatientEd - Bladder cover update:Layout 1 9/28/09 4:54 PM Page 1 Your Pathway of Care: Bladder Cancer Treatments P a t i e n t H a n d b o o ...
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Your Pathway of Care: Bladder Cancer Treatments

P a t i e n t

H a n d b o o k

Bladder Cancer: Your Pathway to Recovery Your Team

Cancer Information

Diagnostic Tests

Surgery



GU Center Guide



How to Contact Us



Understanding Bladder Cancer



Urology Cancer Glossary



Cystoscopy



Ureteroscopy



Radionuclide Bone Scan



CT Scan



MRI Scan



PET Scan



MUGA Scan



24-Hour Urine Collection

• Transurethral Resection of Bladder Tumor (TURBT) • Cystectomy • Robot-assisted Cystectomy • Constructing a New Pathway • Preparing for Surgery o Getting Ready o Breathing Exercises (Incentive Spirometer) o Leg Exercises o Clear Liquid Diet • The Day of Your Surgery o JP Drain • What to Expect After Surgery o Pain Management: PCA Pump • Discharge

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• Follow-up Visits • Medications o Hydrocodone o Stool Softeners o Acetaminophen

Chemotherapy

• Chemotherapy General Information • Chemotherapy Regimens:

o MVAC o Gemcitabine/Carboplatin o Gemcitabine/Cisplatin o Taxol • Intravesical Chemotherapy

Immunotherapy

• Bacillus Calmette-Guerin (BCG) • Intravesical Interferon

Radiation Therapy

• Radiation Therapy for Bladder Cancer

Resources and Support

• Quality of Life During Bladder Cancer Treatment • Resources and Support for Bladder Cancer Patients and their Families

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The GU Center Guide Overview of the GU Center at Roswell Park

The GU Center at Roswell Park Cancer Institute diagnoses, treats, and manages benign and malignant tumors of the urinary system. Common tumors treated include those of the adrenal gland, kidney, ureter, bladder and urethra in men and women, and those of the prostate, testicles and penis in men. Roswell Park’s urology team offers comprehensive programs for the diagnosis and treatment of urinary cancers. At Roswell Park, boardcertified physicians including specialists in surgery, radiation oncology, medical oncology, urology, pathology, radiology, anesthesiology, as well as mid-level practitioners (nurse practitioners, physician assistants), nurses, social workers, psychiatrists, psychology and dietitians, work as a team to provide optimal care for our patients. Your team of doctors, nurses, operating room staff, case managers, and technologists are specially trained to care for patients with malignancies of the genitourinary system.

Multidisciplinary Team

Our multidisciplinary team includes health professionals with different specialties to meet your needs and those of your family. The team includes: Urologic Surgery James L. Mohler, MD Robert P. Huben, MD Khurshid A. Guru, MD Willie Underwood III, MD, MS, MPH Thomas Schwaab, MD, PhD Marcus Sikorski, MS, ANP-C Joel A. Gajewski, PA Dawn Green, PA Tiffany Jones, PA Medical Oncology Donald L. Trump, MD, FACP Roberto Pili, MD Ellis G. Levine, MD Teresa M. Palmieri, MS, ANP-C Sandra R. Fundalinski, MS, ANP-C Carrie G. Silliman, MS, FNP-C Karen L. Vona, MS, ANP-C Jill S. Nestico, MS, ANP-C

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Radiation Medicine Michael R. Kuettel, MD, PhD, MBA Mohammed K. Khan, MD, PhD Anurag K. Singh, MD Brian P. Sullivan, PA Nursing Administrators Kathleen A. Field, BSN, RN, CCRP, OCN, Nurse Manager, GU Center Cheri Gajewski, RN, Nurse Administrator, 7 West GU Center Nursing Michael T. Mallabar, RN Richard T. Powers, RN Christine A. Pieri, RN, OCN Jane M. Novelli, RN Cathrin-Marye D. McMullin, BSN, RN, OCN Mary Lou T. Cappellini, BSN, RN Kathleen A. Flattery, LPN Christopher E. Cummings, LPN Pharmacist Anthony Jarkowski III, PharmD, BCOP Enterostomal Therapy Lucia Scarpino, RN, MS, CWOCN Melissa Hiscock, BSN, CWOCn Case Management Kevin B. Lennon, BSN, RN, Case Manager Psychology Megan E. Pailler, PhD Social Worker Glenn Frost, LCSWR Clinical Navigators Raymond A. Caruana, MS, Ed Richard T. Satterwhite Pathology Borislav A. Alexiev, MD Remedios Penetrante, MD Gissou Azabdaftari, MD Nutrition Elizabeth A. Obenauer Physical Therapy Jill Perna

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How to Contact Us Contacting Us

The GU Center is open between the hours of: o 8:00 a.m. and 4:30 p.m., Monday through Friday For medical questions, problems, prescriptions, appointments: o call the GU Center at (716) 845-3159 After 4:00 pm, weekends and holidays call (716) 845-2300. o If you have had surgery, ask for the urology surgeon on call o If you are not a surgery patient, ask for the medical oncologist on call o If you have an issue related to radiation, ask for the radiation oncologist on call For Case Management (if you need assistance with your home care): o call (716) 845-5735

When to Call Your Doctor

Here are some general guidelines to follow for knowing when to call your doctor or when to go to the emergency room: Call your doctor if: •

your temperature is above 100° F or you have shaking chills



you have vomiting for more than 24 hours



you have a new onset of swelling in your legs

Go to the emergency room or call 911 if: •

you suddenly have trouble breathing or start having chest pain



you develop severe pain in your abdomen or chest



you have a change in your level of consciousness or loss of vision or strength

Roswell Park does not have an emergency department. If you live in the Buffalo area and find yourself in an emergency situation, we would like to ask you to go directly to Buffalo General Hospital which is adjacent to Roswell Park. We have a cooperative relationship with them and they will take care of you and contact your Roswell Park doctor to coordinate your care. Please bring your green Roswell Park identification card to Buffalo General so they know you are a Roswell Park patient. If you live outside of the Buffalo area, please go directly to your nearest hospital emergency department.

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Understanding Bladder Cancer How the Bladder Works

The bladder is a hollow organ in the lower part of the abdomen. It is shaped like a small balloon and has a muscular wall that allows it to get larger or smaller. The bladder stores urine until it is passed out of the body. Urine is the liquid waste that is made by the kidneys as they clean the blood. The urine passes from the 2 kidneys into the bladder through 2 tubes called ureters. When the bladder is emptied during urination, the urine goes from the bladder to the outside of the body through another tube called the urethra.

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What is Bladder Cancer?

Cancer is a disease where cells change and grow out of control. In most cases of bladder cancer, cancer begins in the cells that line the inside wall of the bladder. These changing cells can behave differently. They may form a lump of tissue (tumor) or spread to other parts of the body. They may change quickly or slowly. The wall of the bladder is lined with cells called transitional cells and squamous cells. More than 90% of bladder cancers begin in the transitional cells. This type of cancer is called transitional cell carcinoma. About 8% of bladder cancer begins in the squamous cells. This type of cancer is called squamous cell carcinoma. Cancer that is only in cells in the lining of the bladder is called superficial bladder cancer or carcinoma in situ. Cancer that begins as a superficial tumor may grow through the lining and into the muscular wall of the bladder, becoming invasive cancer. Invasive cancer may extend through the bladder wall. It may grow into a nearby organ such as the uterus or vagina (in women) or the prostate gland (in men). It may also invade the wall of the abdomen. When bladder cancer spreads outside the bladder, cancer cells are often found in nearby lymph nodes. If the cancer has reached these nodes, cancer cells may have spread to other lymph nodes or other organs, such as the lungs, liver, brain, or bones. This is called metastatic bladder cancer.

Stages of Bladder Cancer

Staging classifies the extent of cancer. The number indicates how deeply the tumor has invaded the bladder and/or spread beyond the bladder. The American Joint Committee on Cancer (AJCC) uses the TNM classification to define the stages of bladder cancer: • T is for Tumor. The number after the T indicates the size of the tumor

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and how far it has invaded. The larger the number, the bigger and/or more invasive the cancer. o Ta is noninvasive papillary carcinoma. o Tis is carcinoma in situ or “flat tumor”. o T2 (both T2a and T2b) has invaded the muscle. o T3 (both T3a and T3b) has invaded into the fat surrounding the bladder. o T4 (both T4a and T4b) has invaded 1 or more of the following: prostate, uterus, vagina, pelvic wall or abdominal wall. • N is for Nodes. The number after the N indicates whether the cancer has spread to the lymph nodes. o Nx means the regional lymph nodes cannot be assessed. o N0 means there is no metastasis (spread) of the cancer to the local nodes. o N1 means there has been metastasis but to only a single lymph node and it is no greater in diameter than 2 centimeters. o N2 means there is metastasis in a single lymph node more than 2 centimeters in size but not more than 5 centimeters; or there are metastases to multiple lymph nodes, but none greater than 5 centimeters. o N3 means there has been metastasis to at least lymph node that is more than 5 centimeters in dimension. • M is for Metastasis. The number after the M indicates whether the cancer has spread to distant areas of the body. o Mx means that metastasis cannot or have not assessed. o M0 means there is no distant metastasis. o M1 means the cancer has metastasized to at least 1 site. Another system for identifying the stages of bladder cancer uses Roman numerals from I to IV to define the extent of the disease. The definitions of these stages are as follows: • Stage 0: cancer cells are found only on the surface of the inner lining of the bladder. It can also be referred to as “superficial cancer” or “carcinoma in situ”. Though most of these cancers do recur, only 5% will become the type of cancer that invades the muscle tissue of the bladder. • Stage I: cancer cells are found below the top layer of the bladder's inner lining. They have not spread to the muscle of the bladder. • Stage II: cancer cells have spread to the muscle of the bladder. • Stage III: cancer cells have spread through the muscle layers of the bladder to the layer of tissue surrounding the bladder. Tumor invades any of the following: the prostate in the male, the uterus and/or vagina

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in the female. Cancer that invades the muscle tissue is life-threatening and requires aggressive treatment. • Stage IV: cancer extends to the wall of the abdomen or to the wall of the pelvis. Cancer cells may have spread to lymph nodes and other parts of the body away from the bladder. Combinations of the above are used to determine the prognosis and make treatment decisions. Treatment is decided by stage and grade.

Grades of Bladder Cancer

To help predict how fast cancer will grow and spread, the doctor will want to know its grade. Cancer is graded by looking at cancer cells under a microscope. Uneven cells that are multiplying receive the highest grade. • Low Grade: cells given this grade appear fairly normal. Some cells may have increased in size. Some are multiplying. • Middle Grade: these cells are somewhat uneven in shape. Their sizes vary and many are multiplying. • High Grade: high grade cells are very uneven in shape. They vary widely in size and all are multiplying.

Treatment Options

Treatment depends mainly on the stage of your disease, your age, and your general health. Your doctor can describe treatment choices and discuss the expected results and then you can work together to develop a treatment plan that fits your needs. The main treatment options for bladder cancer are: •

surgery (tumor removal)



chemotherapy



biological therapy



radiation



clinical trials

Surgery

Surgery is a common treatment for bladder cancer. The type of surgery depends largely on the stage and grade of the tumor. The doctor can explain each type of surgery and discuss which is most suitable for you.

Chemotherapy

Chemotherapy uses drugs to kill cancer cells. The doctor may use 1 drug or a combination of drugs. For patients with superficial bladder cancer, the doctor may use IV (intravesical delivered directly into the bladder) chemotherapy after removing the cancer. This is a local therapy where the doctor inserts a tube (catheter) through the urethra and puts liquid drugs in the bladder

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through the catheter. The drugs remain in the bladder for several hours. They mainly affect the cells in the bladder. Usually, the patient has this treatment once a week for several weeks. If the cancer has deeply invaded the bladder or spread to other organs, the doctor may give intravenous chemotherapy where drugs are administered through a vein. This treatment is systemic therapy, meaning that the drugs flow through the bloodstream to nearly every part of the body. The drugs are usually given in cycles so that a recovery period follows every treatment period. The patient may have chemotherapy alone or combined with surgery, radiation therapy, or both. Usually chemotherapy is an outpatient treatment given at the hospital, clinic, or at the doctor's office

Biological Therapy

Biological therapy (also called immunotherapy) uses the body's natural ability (immune system) to fight cancer. Biological therapy is most often used after transurethral resection (TURBT) for superficial bladder cancer. In TURBT, a small wire loop is guided into the urethra to remove cancer cells and kill remaining cancer cells in the bladder using a low electrical current. This helps prevent the cancer from coming back. The doctor may use IV biological therapy with BCG solution, which contains live, weakened bacteria. The bacteria stimulate the immune system to kill cancer cells in the bladder. The solution is placed directly in the bladder and the patient must hold the solution in the bladder for about 2 hours. BCG treatment is usually done once a week for 6 weeks and may be continued for maintenance.

Radiation

Radiation therapy (also called radiotherapy) uses high-energy x-rays to kill cancer cells. Radiation therapy is a local therapy that affects cancer cells only in the treated area. A small number of patients may have radiation therapy before surgery to shrink the tumor. Others may have it after surgery to kill cancer cells that may remain in the area. Sometimes, patients who cannot have surgery have radiation therapy instead. There are 2 types of radiation therapy used to treat bladder cancer: • External radiation: A large machine outside the body aims radiation at the tumor area. Most people receiving external radiation are treated 5 days a week for 5 to 7 weeks as an outpatient. This schedule helps protect healthy cells and tissues by spreading out the total dose of radiation. Treatment may be shorter when external radiation is given along with radiation implants. • Internal radiation: The doctor places a small container of a radioactive substance into the bladder through the urethra or through an incision in the abdomen. The patient stays in the hospital for several days during this treatment. To protect others from radiation exposure, patients may not be able to have visitors or may have visitors for only a short period

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of time while the implant is in place. Once the implant is removed, no radioactivity is left in the body. Some patients with bladder cancer receive both kinds of radiation therapy.

Clinical Trials

A clinical trial is a study designed to evaluate a promising new medical treatment. It includes research done to evaluate new ways to prevent and diagnose and/or treat cancer. At Roswell Park, up to 50% of our patients are eligible to enter clinical trials. Many types of treatment can be tested including: • New ways of preventing cancer such as drugs, diet, and/or exercise • New ways to use existing treatment such as surgery or radiation therapy • New drugs to treat cancer Patients who join clinical trials have the first chance to benefit from new treatments that have shown promise in earlier research. They also make an important contribution to medical science by helping doctors learn more about the disease. Although clinical trials may pose some risks, researchers take many steps to protect their patients. When clinical trials identify new and effective treatments, these treatments will eventually become the new standard of care that will be offered to future patients. Today’s standard treatments were researched and proven by clinical trials done in the past. If you are interested in clinical trials, please talk to your doctor. You can also search for current clinical trials available at Roswell Park on our website at www.roswellpark.org. Look for the link to the Clinical Trials Search tool.

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Urology Cancer Glossary adrenal glands

A pair of endocrine organs near the kidney that produces glucocorticoid, mineralocorticoid, and epinephrine and norepinephrine

benign

Tumors that do not spread beyond their local area; non-cancerous

biopsy

Removal of a small amount of tissue to diagnose the disease process

bladder

A hollow organ in the lower abdomen that stores urine, the liquid waste produced by the kidneys

bone scan

A technique to create images of bones on a computer screen or on film. A small amount of radioactive material is injected into a blood vessel and travels through the bloodstream; it collects in the bones and is detected by a scanner

cancer

A group of diseases where abnormal cells spread throughout the body

carcinoma in situ

Cancer (carcinoma) that involves only cells in the tissue in which it began (in situ) and that has not spread to nearby tissues

catheter

A flexible tube used to deliver fluids into or withdraw fluids from the body. A Foley catheter is a soft plastic or rubber tube that is inserted into the bladder to drain urine

chemotherapy

Any cancer treatment that uses drugs to kill cancer cells. Intravenous chemotherapy refers to treatment in which the drugs are given through a vein

continent pouch or reservoir (Indiana pouch)

A continent pouch or new bladder is fashioned from part of the bowel and used if the urethra is removed in the operation. Urine is drained by passing a small catheter into the new bladder

creatinine

A compound that is excreted from the body in urine. Creatinine levels are measured to monitor kidney function

CT or CAT scan

Special x-ray that uses computers to produce detailed pictures of a cross section of the body

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cystectomy

Surgical removal of the bladder

cystoscopy

Examination of the bladder and urethra using a cystoscope, which is inserted into the urethra. A cystoscope is a thin, tube-like instrument with a light and a lens for viewing. It also may include a tool used to remove tissue for a biopsy

external sphincter

Skeletal muscles below the prostate used to control the flow of urine

fulguration

Destroying tissue using an electric current

ileal conduit

See urostomy

incontinence

Loss of the ability to hold urine in the bladder and control passing urine

intravesical chemotherapy Jackson-Pratt drain

Chemotherapy agents delivered directly into the bladder

kidneys

The kidneys make urine by removing wastes and extra water from the blood. Urine collects in the renal pelvis in the middle of each kidney and passes into the bladder through a tube called a ureter

lymph nodes

Small bean shaped organs scattered throughout the body that filter bacteria or cancer cells that travel through the lymphatic system

lymphatic system

Organs that produce and store infection-fighting cells. Includes lymph nodes, bone marrow, spleen and thymus

malignant

Cancerous tumors that are capable of spreading to other parts of the body

metastasis

The spread of cancer from 1 body part to another

MRI (Magnetic Resonance Imaging)

A noninvasive diagnostic technique that produces computerized images of internal body tissues and is based on nuclear magnetic resonance of atoms within the body induced by the application of radio waves

A thin rubber tube inserted into the body to drain fluid from and around the area where surgery was performed

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orthotopic neobladder

When the urethra can be preserved, a part of the small intestine is used to make a new pouch that is connected to the remaining part of the urethra. Urine passes out of the body through the natural urethra. The bladder empties normally. You will need to train your abdominal muscles and learn to use a catheter to drain the urine several times a day

pathologist

A physician who specializes in diagnosing diseases by examining tissue, blood, and body fluids using various laboratory techniques

PET (Positive emission tomography) scan

Uses small amounts of radioactivity to take detailed pictures of different areas inside your body

radiation therapy

Treatment with a series of x-rays that kill cancer cells inside the body

radionuclide

A very small amount of radioactive compound that is injected into a vein in order to produce detailed, computerized pictures of areas inside the body; most commonly used to look for bone metastases in a bone scan

staging

Process of determining how far the cancer has progressed using blood tests and other diagnostic tests

stoma

In bladder cancer treatment, a surgically created opening in the abdomen which allows urine to drain from the body

transurethral

Describes any operation that is performed through (trans) the urethra

tumor grade

A classification that describes how aggressive a cancer appears to be when viewed using a microscope

TURBT (Transurethral resection of bladder tumor)

A surgical procedure that is used to diagnose bladder cancer and/or to remove cancerous tissue from the bladder. During a TURBT, a cystoscope is passed into the bladder through the urethra. A tool called a resectoscope is used to remove the excess or abnormal tissue for biopsy and to burn away any remaining cancer cells

ureters

The tube that carries urine from the kidney to the bladder

urethra

The tube that carries urine from the bladder to the outside of the body

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urine

urostomy

Fluid containing water and waste products. Urine is made by the kidneys, stored in the bladder, leaves the body through the urethra

The most common method to make a passageway for urine after a patient has undergone a cystectomy. A small section of the ileum (the third part of the small intestine before it becomes the large intestine) is used to join the ureters from the kidney to the skin of the abdominal wall to form a conduit for urine to pass (the stoma) into a storage bag attached to the skin of the abdomen. The remaining ileum is joined together to restore bowel function. Also called an ileal conduit.

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Cystoscopy Overview

In this procedure, a thin, lighted tube called a cystoscope is used to examine the inner surface of the bladder for abnormalities. The cystoscope is gently inserted through the urethra and into the bladder. The procedure usually takes from 15 to 20 minutes. In addition to giving doctors clear view of a visible bladder tumor, a cystoscopy also permits doctors to perform 2 other diagnostic tests that may be used for certain patients:

Preparing for a Cystoscopy



The first is a “bladder wash,” where a salt solution is passed into the bladder through a catheter (tube) to loosen cells on the bladder’s inner lining. This solution is then removed and a sample taken to be examined under a microscope (cytology).



The second is a biopsy, where a tool attached to the cystoscope is used to remove abnormal tissue found on the bladder lining. This tissue also will be examined in the laboratory to determine if the abnormal area is cancerous. Some bleeding may occur when the biopsy is taken, so the doctor may cauterize the lining to prevent further bleeding. Patients usually receive anesthesia, either local or general, when a biopsy is to be taken.

Your doctor will tell you whether you will receive general or local anesthesia. If the cystoscopy is to be performed under general anesthesia, you will be asked to not eat or drink for a specific amount of time before the procedure. If it will be done under local anesthesia, you can eat as you would normally. Tell your doctor if you are taking: • any medicine to "thin the blood", such as Coumadin® or heparin • aspirin, ibuprofen or Plavix® • insulin or any diabetic medications you take by mouth • arthritis medications • heart and hypertension medicine • over-the-counter medications, herbal, or vitamin supplements Check with your doctor to find out if you need to stop any of these medications prior to your procedure. Your doctor may order certain blood or urine tests. If you suspect that you may have a urinary tract infection, please tell your doctor so that proper antibiotics can be prescribed before your surgery.

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The Day of Your Cystoscopy

• In most cases, you will lie on your back with your knees raised and apart. The lower part of your body will be covered with a sterile drape. • A nurse or technologist will clean the area around your urethral opening and apply a local anesthetic. • The doctor will insert the tip of the cystoscope through your urethra and up into the bladder. • A sterile liquid (water or saline) may be passed through the cystoscope to stretch your bladder and make it easier for the doctor to examine the bladder wall. • A bladder wash or biopsy may be performed.

After Your Cystoscopy

If you received general anesthesia, you will need to rest for 24 hours following the procedure. During that time, do not drive or use any machinery. Your doctor will tell you about any physical limitations you may have. You most likely will feel a burning sensation when you urinate, but this should go away quickly.

When to Call the Doctor

Call your doctor immediately if: •

your experience excessive bleeding



you are unable to urinate



you experience any signs of infection such as chills, fever, pain or swelling

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Ureteroscopy Overview

Ureteroscopy is a minimally invasive technique during which a thin, lit, flexible scope, called an ureteroscope is passed through the urethra, into the bladder, and then up into the ureter(s).

Preparing for an Ureteroscopy

Before your procedure, your doctor may order certain blood or urine tests. If you suspect that you may have a urinary tract infection, please call the physician office immediately so that proper antibiotics can be prescribed before your surgery. • One week before surgery do not take: o aspirin, aspirin-like products, NSAIDs (such as ibuprofen/ (Advil, naproxen/Aleve®) o any medicine to "thin the blood" such as Coumadin® or heparin, • Tell your doctor if you are taking: o

aspirin, ibuprofen or Plavix®

o insulin or any diabetic medications you take by mouth o arthritis medications o heart and hypertension medicine o over-the-counter medications, herbal, or vitamin supplements • Check with your doctor to find out if you need to stop any of these medications prior to your procedure.

The Day of Your Ureteroscopy

The procedure lasts from 1 to 3 hours and is usually done under general anesthesia. If you are going home the same day, please arrange to have someone available to drive you home. Ureteroscopy usually can be performed as an outpatient procedure. You may require an overnight hospital stay, however, if the procedure proves lengthy or difficult.

After Your Ureteroscopy

If you received general anesthesia, you will need to rest for 24 hours following the procedure. During that time, do not drive or use any machinery. • Your doctor will tell you about any physical limitations you may have. • You are likely to feel a burning sensation when you urinate, but this should go away quickly.

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• To relieve discomfort, drink two 8-ounce glasses of water every hour for 2 hours. Ask your doctor if you can take a warm bath to relieve the burning feeling. If not, you may be able to hold a warm, damp washcloth over the urethral opening. • You may notice a small amount of blood in your urine. This may continue, on and off, for a few weeks. These are normal side effects. Please talk to your doctor if you have any questions or concerns about this. • Your doctor may give you an antibiotic to take for 1 or 2 days to prevent an infection.

When to Call the Doctor

Call your doctor immediately if: •

your bleeding becomes excessive



you are unable to urinate



you experience any signs of infection such as chills, fever, pain or swelling

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Radionuclide Bone Scan Overview

A bone scan identifies changes or problem areas in the bones of your body. The bone scan is a reliable and painless test in which images of all the bones in your body are taken by using a small amount of radioactive material and special scanning equipment. The bone scan is often done as part of a check-up to be sure that the bones are free of cancer and to determine the effects of cancer treatment. The total amount of radiation that you are exposed to during the bone scan is very low. A medication that contains a small amount of radioactive material is injected into a vein in the arm. After about 2 to 3 hours, the bone cells have collected the medication from the circulating blood. Radiation rays from the medication make an image on photographic film. A nuclear medicine doctor studies this picture and notes any changes or problem areas in the bones. A report is then sent to your physician.

The Day of Your Bone Scan

• A nuclear medicine technologist will inject the medication into a vein, usually in your arm. You may feel a brief sting in your arm when the IV is inserted. • You will be asked to return to the Nuclear Medicine Clinic 2 to 3 hours later. • To ensure accurate results, please return on time. • If for some unavoidable reason you cannot keep your appointment, please notify the Nuclear Medicine Clinic at (716) 845-3231. • When you return for the bone scan, dress in clothing that has no metal accessories that could interfere with the picture. • Empty your bladder before your scan begins. • You will be helped onto the scanning machine, which consists of a firm bed with a camera above it. A nuclear medicine technologist will help position you and adjust the camera. • As you lie on your back, the scanner will be positioned over you and will then move over the entire length of your body. This will be done over the top to make an anterior picture and once from below to make a posterior picture. • Additional views may be required for accurate interpretation by the physician studying the pictures. • The bone scan will take about 1 hour. During the bone scan, try to relax, breathe normally and lie very still. Too much movement will cause a poor quality picture that is difficult to interpret.

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After Your Bone Scan

There are no side effects from the bone scan. You can resume normal activities. The radioactive material presents no immediate danger to you or to the people around you, and no special precautions are needed. Within 6 hours after the injection more than half of the radioactivity is either expended or eliminated from your body. After 48 hours the radioactivity is completely gone.

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CT Scan Overview

A CT (computed tomography) scan, also called a CAT (computed axial tomography) scan, is a diagnostic exam used to detect tumors, determine the stage and location of a cancer, and find out about the effectiveness of cancer treatment. The CT scan may also be used to guide a doctor who is performing a biopsy (the removal of a small amount of tissue for examination). The CT scan obtains multiple cross-sectional images of your body by using special x-rays and computer enhancement, creating an image many times more sensitive than the image from a simple x-ray. The visit will generally last up 1 to 1 ½ hours, although the scanning itself takes only 10 to 15 minutes. When the scan is finished, you may be asked to remain on the exam table while a radiologist reviews the images to determine if additional images are needed.

Preparing for Your CT Scan

• Tell the doctor if you previously had an allergic reaction to intravenous (IV) dye or any other allergies, especially iodine. • When your doctor schedules a CT scan, let him or her know if you have diabetes (sugar in the blood) and take a drug called Glucophage (metformin). You may be asked not to take it the day before your CT scan, the day of your CT scan, and for 2 days after your CT scan. Check with your doctor for your specific instructions. • Tell your doctor/nurse about all your medications, including over-thecounter products, vitamins, and herbal supplements. • Check with your doctor/nurse if you should take your regular medications that day. • Women: tell your doctor if you are breast-feeding or may be pregnant. • Do not eat anything for 6 hours before your scan. • Do not drink anything for 2 hours before your scan.

The Day of Your CT Scan

• If you have been instructed to take medications on the day of your scan, you may take them with a small sip of water. • Wear loose, comfortable clothing to your appointment. When you arrive for your CT scan, you may need to change into a gown. • You will be asked to remove any item that contains metal (including jewelry, eyeglasses, dentures and hairpins) because metal objects may affect the CT images. You may also be asked to remove hearing aids and removable dental work.

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• Tell the technologist if you have: o any allergies to IV dye or iodine o asthma o multiple myeloma o diabetes o any disorder of the heart, kidneys or thyroid gland • You may receive a contrast agent before the scan, which may be a drink, an intravenous (IV) injection or both. The contrast helps create a clearer picture of the parts of the body being scanned. • Intravenous contrast may cause you to feel hot or get a metallic taste in your mouth; both sensations should disappear after a few minutes. If you experience a more serious reaction, tell the technologist immediately. • If you have a liquid contrast drink, you will need to wait up to 1 hour before your scan can begin. • A technologist will help position you on the table and then monitor the procedure from an adjoining control room. You can communicate through an intercom system. • The CT scan resembles a large donut. The exam table will slide back and forth through the large hole in the center of the machine as the scanner rotates around you. You will hear whirring or clicking sounds from the machine; some machines are noisier than others. • CT scans are not painful. You will need to lie still for the entire scan, which may become uncomfortable. You may be asked to hold your breath during part of the scan because the motion created by breathing can blur the images. The exam table may be raised, lowered, or tilted to create the correct angle for the x-rays. Ask the technologist performing the scan to tell you when the table will move.

After Your CT Scan

You can expect to resume your normal activities immediately after your CT scan, including driving. If you received a contrast agent for the scan, you may be asked to drink a lot of water to help flush it out of your body.

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MRI Scan Overview

An MRI (magnetic resonance imaging) is an imaging machine that uses a large magnet, a computer, and radio waves to look inside the body and to evaluate various parts of your body. Having an MRI scan is painless and requires minimal preparation. The test can take anywhere from 30 minutes to 2 hours. If you become uncomfortable lying still for a long time or if you are uncomfortable with close spaces, talk to your doctor beforehand. He or she may make arrangements for you to receive a sedative before your scan. If you have a sedative, you will need to inform the receptionist and arrive one half hour before the scan to take the medication. If you have a sedative, you must have someone to drive you home.

Preparing for Your MRI

• IMPORTANT: If you have a cardiac (heart) pacemaker or brain aneurysm clips you cannot have an MRI. Please discuss your options with your doctor. • Please be sure to let your doctor and nurse know if you have any allergies. • Please leave all personal belongings, especially jewelry, money, credit cards etc, at home on the day of the test. • Because the MRI uses a large magnet, no metallic objects or mechanical devices can be in the MRI room. • Please let your doctor know if you have any of the following: o artificial heart valve or vascular stent o metal plate, pin or other metallic implant o recently placed artificial joint (hip, knee, etc.) o insulin pump or other infusion pump o previous gun shot wound o inner ear implant • Please let your doctor know if you are pregnant or on dialysis. • Diet: Generally, there are no restrictions to your diet. Please check with your doctor if you have to follow any special instructions. • Medications: Generally, you may take your usual medications. Please check with your doctor if you have to follow any special instructions for the day of the test. • Jewelry: All metal jewelry and watches must be removed.

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• Dental devices: If you wear dentures, or partial dental plates, they must be removed. • Hair products: Many hair products or attachable hair weaves contain magnetic particles and they must be removed. You should also remove any hair clips, ties, or pins that are made of metal or have metal parts on them. • Make-up: Because some make-up, particularly mascara, is made with a metallic base, it is best not to wear any on the day of your appointment. • Tattoos: If you have any tattoos, be sure to tell the MRI technologists before your scan.

The Day of Your MRI

• You will change into a hospital gown and be asked to remove all personal belongings, including anything with metal (i.e. jewelry, bank cards, make up, hearing aids etc.). • Let the MRI technologist know if you are hard of hearing without your hearing aid. • You may need to be given a contrast dye before the exam to improve the quality of the images made by the machine. If so, a nurse will start an IV before or during the exam. You may feel a brief sting in your arm when the IV is inserted. • The technologist will position you on the scanning table and then move the table to the center of the MRI machine. The inside of the machine is like a giant tunnel that is well lit and open on each end. • A device called a "coil" will be placed either over or under you. The coil helps to get a clear picture. • After you are precisely positioned, the technologist will leave the room. The technologist will be able to see and hear you during the test. Let them know if you need help. • During the MRI scan, you will hear tapping, thumping and other noises. Earplugs or music may be provided to help block the noise. • Try to relax and lie as still as possible. Any movement will blur the picture.

After Your MRI

When scanning is complete you can return home and resume your normal activities, medications and diet. The radiologist will interpret the scan and send a report to your physician.

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PET Scan Overview

A PET (positron emission tomography) scan is used to detect changes in the tissues and organs of your body. X-rays, CT scans, and MRIs show the shape and structure of your body’s organs and tissues. A PET scan shows how they work. A PET scan uses small amounts of radioactivity, called a radionuclide, to take detailed pictures of different areas inside your body. A small dose of this radionuclide is injected into a vein in your hand or arm. The radionuclide gives off positively charged energy particles, or positrons. The PET scanner rotates around the body to detect these positrons at many different angles. If you become uncomfortable lying still for a long time or if you are uncomfortable with close spaces, talk to your doctor beforehand. He or she may make arrangements for you to receive a sedative before your scan. If you have a sedative, you will need to inform the receptionist and arrive one half hour before the scan to take the medication. If you have a sedative, you must have someone to drive you home.

Preparing for Your PET Scan

• Do not eat or drink for 4 hours before your appointment. • If you need to take medications, take them with a small sip of water. • If you have diabetes, contact your physician for specific instructions. You may need to follow special guidelines. Do not take insulin for 4 hours before your scan.

The Day of Your PET Scan

• Plan to report to the imaging center on time. The dose of your radionuclide is made precisely for the time of your appointment. • If your brain is being scanned, you will need to wait quietly, usually in a dimly lit room. You will need to avoid any mental stimulation such as reading or talking. • If other areas of the body are being scanned, you will be able to read, listen to music, etc. • You may spend 2 to 3 hours at the imaging center. The actual scanning time is anywhere from 20 to 60 minutes. The time can vary depending on the number of areas being scanned that day. • A soft, flexible tube or needle will be inserted into one of your veins. You may feel a brief sting in your arm when the IV is inserted. The radionuclide will be given to you through this tube.

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• You may need to wait about 60 minutes for the radionuclide to move through your body. • You may be asked not to speak during the procedure in order to prevent the radionuclide from going to your tongue or vocal cords. • You will be placed on a flat table that moves through a donut shaped opening on the PET scan machine. The scan makes no noise. • During the scan, you will need to lie very still because any movement could interfere with the test results. The table moves and glides you through the machine, so you do not need to move.

After Your PET Scan

• If you were not sedated, you may leave as soon as the scan is complete. • Unless you receive special instructions, you may eat and drink immediately and go back to your usual activities and diet.

Risks

No side effects are associated with the radionuclide tracer. The tracer is eliminated rapidly from your body, making it safe for you to be near others during and immediately after your PET scan.

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MUGA Scan Overview

The MUGA scan is a test that uses radioactive materials called tracers to show the heart chambers. The procedure is noninvasive. The instruments do not directly touch the heart. You will likely have a MUGA scan before your chemotherapy begins to get a baseline measurement, and then periodically during your treatment to make sure that the chemotherapy is not damaging your heart. In order to see the heart, we will give you a small amount of a radioactive tracer. This material is different from the dyes that are used for a CT or MRI scan. It does not cause nausea, diarrhea, or flushing. MUGA scans expose you to about the same amount of radiation as a chest x-ray.

Preparing for Your Scan

You may be told not to eat or drink beverages for several hours before the test. Your doctor or nurse will give you specific instructions. Please contact them if you have any questions.

The Day of Your Scan

• You will be given an injection containing the radioactive tracer. You may feel a brief sting in your arm when the IV is inserted. • The tracer will attach to your red blood cells. Your blood cells will carry it through your circulatory system, including your heart. • The technologist places electrode patches on your chest. The electrodes are attached to a nuclear imaging computer. • A gamma camera takes multiple pictures and creates a moving image of your heart. • During the test, just try to relax, breathe normally, and lie still.

After the Scan

There are no side effects from the MUGA scan. The radioactive material presents no immediate danger to you or to the people around you, and no special precautions are needed. Within 6 hours after the injection more than half of the radioactivity is either expended or eliminated from your body. After 48 hours the radioactivity is completely gone.

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24-Hour Urine Collection Overview

A 24-hour urine collection is an accumulation of the total amount of urine voided in a 24-hour period. This is an important test to determine how well the kidneys are functioning. It is important that all urine during the 24-hour period is collected or the results may be inaccurate.

Collection Instructions

1. You will be given 2 large brown containers with an instruction sheet. If you are a female, you will also be given a white collection container which fits under the toilet seat to collect your urine. Urine is then poured into the large brown containers. Fill 1 brown container and then the 2nd one, if needed. 2. To start the test, empty your bladder and discard the urine. You must begin this process with an empty bladder. Write down the time you emptied your bladder in the space provided and start counting 24 hours from that time. For example, if you started your collection at 8:00 am, you will finish your collection at 8:00 am the next day. 3. Each time you void, the urine should be collected and stored in the large brown containers and kept at refrigerator temperature throughout the 24 hours. Remember to drink plenty of liquids (at least 8 glasses of water) during the 24 hour period, but do not drink tea and coffee, which act like natural water pills and will cause your body to pass more urine. If you leave your home during this time, you must take the container with you. 4. When your 24 hours are up, you should empty your bladder one last time and add this to the collection container. This will complete your 24 hour urine collection process. Write down the time you finish your collection. 5. Return the brown urine collection containers to the Roswell Park’s Phlebotomy Lab with: o

The form indicating the start and end times of your collection

o

The laboratory order provided (called Computer Downtime Order Form)

You may need to get your blood drawn so ask the phlebotomist before you leave. The Phlebotomy Lab is located on the ground floor of the main hospital next to Registration (Patient Access). The hours of operation are Monday through Friday from 6:00 am to 6:00 pm.

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Surgery Overview

Surgery is the most common treatment for bladder cancer. It treats the cancer by focusing only on the bladder and the areas close to the tumor. Surgical treatment of bladder cancer includes 2 methods:

TURBT



Transurethral resection of bladder tumors (TURBT): a procedure in which cancer cells are removed using a loop that cuts then cauterizes.



Cystectomy: a procedure that involves partial or total removal of the bladder. If the bladder is removed, additional surgical procedures will be performed to make a new pathway for urine.

This treatment procedure is used if the cancer is growing slowly and is restricted to the bladder lining. During TURBT, a cystoscope is inserted into the bladder through the urethra. The doctor uses a cutting tool contained in the cystoscope to remove the tumor. If necessary, the doctor may use an electric current to burn away remaining cancer cells (referred to as fulguration). The doctor may also take biopsies of both the tumor and surrounding normal cells. These samples will be sent to the laboratory for examination. A TURBT is usually performed under general or spinal anesthesia. Most people go home the same day as the procedure, but the surgery may take longer than usual and you may remain in the hospital overnight if the tumor is especially large.

Cystectomy

A cystectomy, or surgical removal of the bladder, is the best option for aggressive bladder cancers. The procedure involves a careful examination of all the organs and tissue in the area of the bladder to make certain that cancer has not spread outside the bladder. Your doctor may remove the lymph nodes in the region. Because there is a significant risk that the cancer may return following cystectomy, your doctor will arrange for frequent follow-up appointments. A radical cystectomy includes removal of the entire bladder, the nearby lymph nodes, part of the urethra, and the nearby organs that may contain cancer cells. In men, the prostate gland also will be removed; sometimes, the urethra may be removed as well.

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In women, the lower end of the ureters, the front wall of the vagina, the uterus, the Fallopian tubes, and the ovaries also will be removed. Please speak to your doctor if you are would like to keep your ovaries. In both men and women, the nerves in the pelvic area may be damaged, which can affect sexual performance. Should sexual problems occur, your doctor will discuss with you the medical and surgical ways of addressing such difficulties. In some instances, a segmental (or partial) cystectomy is performed where only the cancer and some of the bladder tissue around the tumor are removed. A pathologist will examine the tissue removed during the procedure to check for the presence of cancer cells.

Robot-assisted Cystectomy

Since 2005, Roswell Park has a minimally invasive option for surgical bladder removal called robot-assisted radical cystectomy. The robotic surgical equipment imitates the movements of a human surgeon’s hands while increasing precision. The procedure is done laparoscopically—through small incisions in the abdomen—rather than by using the traditional, open, large incision. Compared to traditional cystectomy, robot-assisted radical cystectomy involves a 50% decrease in pain, less blood loss, quicker recovery, and fewer complications.

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Constructing a New Pathway Overview

If you have a cystectomy, you also will have reconstructive surgery. Once the bladder is removed it is necessary to create a storage space to take over the bladder functions and to fashion a structure that will allow you to pass urine. This may be done 3 different ways.

Urostomy

The most common method to make a passageway for urine is by the formation of an ileal conduit or urostomy. This method is used when the urethra is removed as part of the cystectomy. For this procedure, the surgeon uses a portion of the small intestine (the ileum) to make a tube through which urine will pass out of the body through an opening on the outside of the body. The opening is called a stoma. The stoma is shiny, wet, and red in color, like the inside of the mouth. It is round to oval in shape and usually placed above the groin on the right side of the abdomen. People who have a urostomy wear a flat, disposable, and watertight bag to collect urine. The bag must be emptied and replaced regularly, and the stoma cleaned and checked.

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Continent Reservoir

Depending on your anatomy, your doctor will use part of your large and small intestine to create a storage pouch called a continent reservoir inside your body to collect urine. This pouch can also be called an Indiana pouch. Unlike the ileal conduit, you will not have to wear an external bag. The stoma is very small and can be covered with a bandage. Inside the pouch is a one-way valve that does not allow urine to escape. Every 4 to 6 hours, you will insert a small catheter (tube) into the stoma. This will open the valve and allow the urine that was in the pouch to drain out through the catheter. The catheters can be used many times but remember to wash it with soap and water after each use and store in a protective pouch, such as a Ziploc bag.

Orthotopic Neobladder

If the biopsy of your urethra showed no cancer, a part of your small intestine can be used to make a new pouch (a neobladder) that is connected directly to your urethra. No stoma is created, and so there is no need for an external bag to collect urine or to insert a small catheter every 4 to 6 hours. Instead, the neobladder empties just as the original bladder did, with urine passing normally, through the urethra. Some people may need to use a small disposable catheter a few times a day to empty the neobladder. However, the catheter will be placed into the bladder through the urethra. Unlike the ileal conduit and continent reservoir, there will be no stoma.

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Preparing for Surgery: Getting Ready What to Expect During Your Pre-admission Visit

Some time before your surgery, you will be asked to come to Roswell Park for a preadmission visit. During that visit you may receive tests and exams, including: • blood tests • chest x-ray • electrocardiogram (EKG) • physical exam by your physician • anesthesiologist assessment • urology nurse assessment

What To Tell Your Doctor Before Surgery

Tell your doctor, anesthesiologist and nurse if you have: •

any allergies



had problems with anesthesia, or have family members who have had problems with anesthesia



a pacemaker. Please bring in the card you received from the pacemaker manufacturer that indicates the model number of your pacemaker



a history of falls, problems with mobility, or difficulties in hearing or learning Be sure to tell your doctor and the preadmission staff about all the medications you take, including:

Blood Banking



insulin



heart and hypertension medicine



non-prescription (over-the-counter) medications



herbal or vitamin supplements

You have the opportunity to donate 2 pints of blood in case you need blood during surgery. This process is called autologous blood transfusion and takes about a month to complete. The blood needs to be drawn at least seven days before surgery and no more than 4 weeks before surgery. If you decide to do this, you can make arrangements while you are here.

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Medications

• Tell your doctor about all of the medications you routinely take at home, including: o o o o

insulin heart and hypertension medicine non-prescription medications herbal or vitamin supplements

• 1 week prior to surgery: discontinue aspirin, Plavix® (clopidogrel), herbal supplements, garlic tablets and vitamins. • 5 days prior to surgery: discontinue Coumadin® (warfarin), • 3 days prior to surgery: discontinue all nonsteroidal anti-inflammatory medications (NSAIDs) such as Advil®/ibuprofen, Aleve®/naproxen, Feldene®/piroxicam, Clinorial®/sulindac, and ketoprofen. • 2 days prior to surgery: discontinue Fragmin®/dalteparin, Arixtra®/fondaparinux • 1 day prior to surgery: discontinue Lovenox®/Enoxaparin • On the day of your procedure only take the medications your doctor has instructed. Take them with a very small sip of water.

Day Before Surgery Bowel Prep

• Drink clear liquids (Gatorade, clear soda, clear juices, and clear

broths). • Do not eat solid food or eat/drink any milk products. • Additional clear liquids are encouraged to avoid dehydration. • If possible, place your magnesium citrate in the refrigerator. It tastes

better when chilled. • At 8:00 am, drink 1 cup (8 ounces) of clear liquid every 15 minutes for

a total of 32 ounces of clear liquids between 8:00 and 9:00 am. • At 1:00 pm, drink ½ bottle of magnesium citrate. • At 3:00 pm, drink the other ½ bottle of magnesium citrate with 3 cups

(8 ounces each) of clear liquids. • Between 10:00 am and 6:00 pm, drink 1 cup (8 ounces) of clear

liquids every hours. • From 7:00 pm to 12 midnight, additional clear liquids are encouraged.

Drink at least 4 more cups (8 ounces each) of clear liquids before midnight. • After 12:00 midnight, do not eat or drink anything. If you need to take

any medications, you may take them with a sip of water. • You may brush your teeth and rinse with mouthwash, just be sure to

avoid swallowing any water or mouthwash. • Take any medications approved by your anesthesiologist with a very

small amount of water

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Preparing for Surgery: Breathing Exercises (Spirometer) Introduction

Coughing and deep breathing exercises will help you clear and expand your lungs and help prevent pneumonia. They will also help you recover from surgery more quickly. Please practice them before you go to surgery.

Incentive Spirometer: Deep Breathing Exercise



Place the mouthpiece in your mouth.



Draw in air as if you were sipping liquid through a straw.



Do this 10 times every 2 hours.



Holding 1 ball up for 10 seconds is better than getting 2 balls up for 1 second. Try to hold the balls up by taking slow, deep breaths.



Take a deep breath through your nose to filter, warm and moisten the air.



Hold your breath for a short time.



Exhale slowly and gently through pursed lips (as if you were blowing out a candle).



Do this for 3 breaths. On the 3rd breath, cough instead of breathing out.



Repeat this deep breathing 2 more times.

Coughing and Deep Breathing

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Preparing for Surgery: Leg Exercises Introduction

Leg exercises are important in helping to prevent the formation of blood clots in your legs following surgery. These exercises will help you recover from surgery more quickly. Please practice them before you go to surgery.

Leg Exercises

With your legs straight, first point your toes down. Then bring your toes up towards your head.

Do these exercises 10 times every hour with 1 foot and then the other.

With your legs straight, rotate your ankles one at a time as if you were drawing little circles with your toes. Do this exercise 10 times with 1 foot and then the other foot. .

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Preparing for Surgery: Clear Liquid Diet Day Before Your Surgery

Drink only a clear liquid diet the day before your surgery. Liquids that you can see through at room temperature (about 78°-72°) are considered clear liquids.

Beverages



Soft drinks (orange, ginger ale, cola, lemon/lime, etc.)



Gatorade or Kool-Aid



Strained fruit juice without pulp (apple, grape, orange, lemonade)



Water, flavored waters, tea or coffee (may add sugar but NO milk or creamers)

Soups



Chicken or beef broth or bouillon – no added meat, noodles or vegetables

Desserts



Hard candy



Jell-O (no fruit toppings or whipped cream)



Popsicles or lemon ice (no sherbets, sorbets, or fruit bars)

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The Day of Your Surgery: Arriving at the Hospital What to Pack

Bring the following items with you to the hospital: • this book • a list of your medications • your Healthcare Proxy and Living Will or Advanced Directives If you don’t have a Healthcare Proxy or Living Will, talk to your nurse or Patient Access staff when you register. They will be able to help you. Do NOT bring: • credit cards • money • jewelry • If you forget and bring a valuable item, give it to family or friends for safekeeping. Otherwise, ask the registration clerk for assistance

Before Leaving Home

• You may brush your teeth and rise with mouthwash, however, avoid swallowing any water or mouthwash. • Take only the medications approved by your anesthesiologist with a small amount of water. • Remove any nail polish. • Bathe or shower the night before or the morning of your procedure • Do not apply any body lotions, deodorant or powder after taking your shower. • Do not shave anywhere near your operation site. • Remove any contact lenses. Bring a storage case for them and give them to your family/friend. You may bring an extra pair of eyeglasses. • Remove all piercings and jewelry, including rings. • If appropriate, bring your crutches or walker with you to the hospital, labeled with your full name and telephone number. • Wear loose fitting clothing.

At the Hospital

Please arrive promptly at the hospital at the time you were assigned. Once you have arrived, go to the Patient Access Department (Registration) located in the hospital lobby on the ground floor. A Patient Access staff member will direct you where to go next.

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In the Surgical Center

In the Operating Room

• Tell your nurse if you have any allergies, particularly to seafood or iodine (the skin cleanser used prior to the surgery contains iodine). •

A staff member will attach an ID bracelet to your arm and give you a hospital gown to put on. These are the only things you can wear to the operating room.



Make sure you are not wearing anything that might come off during surgery, such as dentures or partial plates, eyeglasses or contact lenses, jewelry, wigs, or a removable prosthesis such as an artificial eye or leg.



A nurse will take your vital signs (pulse, respiration, blood pressure, and temperature) and review your medical history.



An IV (intravenous tube) containing saline solution will be placed in a vein in your arm.



You will be helped onto a stretcher and transferred to the Holding Area. There, a staff member will confirm your identification by reading your ID bracelet. You will then be transferred to the Operating Room.



While you are in the operating room, your family may wait in one of our surgical waiting areas. Your physician will speak with them when surgery is completed.

The staff in the operating room will be wearing uniforms, masks, and caps to protect you from infection. •

Your arms and legs will be gently secured for your safety.



If you feel cold, ask for a blanket.



An anesthesiologist or nurse anesthetist will monitor you while you are under anesthesia.



A blood pressure cuff will be put on your arm.



An EKG machine will monitor your heart rate.



Medications will be given through your IV to make you sleep.



While you are sleeping, a tube will be put in your throat to help you breathe.



Your skin will be scrubbed with a special soap called Betadine or an alcohol solution. Either skin preparation will reduce your chance of getting an infection. The reddish color will wash away without staining your skin.



A Foley catheter will be inserted.



When the procedure is over, you will be moved to the PACU (Postanesthesia Care Unit).

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The Day Of Your Surgery: Jackson-Pratt (JP) Drain What is a Jackson Pratt Drain

A Jackson Pratt (JP) drain is a suction device in which the drain itself is inside the body. It is made of Teflon and has multiple drainage holes. The drain is connected to clear plastic tubing that is usually sutured to the skin where it leaves the body. The tubing connects to a bulb reservoir. The bulb, when squeezed empty, applies constant suction to the drain and pulls the fluid out of the body. The drain is removed when the excess fluid has stopped draining from the body.

How to Care For Your Drain

Cleaning Your Drain

You will need the following supplies to perform drain care: •

A cup provided by your nurse at discharge



A sheet of paper to record the amount of drainage

It is very important to wash your hands thoroughly with soap and warm water before and after you clean the drain. Clean the drain twice a day. Discard the drainage once in the morning and once in the evening at the same time each day. Follow these simple steps:

When to Call the Doctor



Pull the stopper out of the drainage bottle and empty the drainage fluid into the measuring cup.



Record the amount of drainage fluid on your record sheet.



Dispose of the drainage fluid in a toilet or rinse it down a sink.



To re-establish suction, squeeze the drain in the palm of your hand with your fingers until the inside walls of the drain touch.



While maintaining pressure, replace the plug. Slowly release your grip to re-establish suction.



The drain should remain somewhat flat. It should not be fully inflated. If the drain is not flat, the suction is not working.

Call your doctor: • if the drainage suddenly stops (the drainage should decrease gradually) •

if there is a sudden change in the color of the drainage (drainage should gradually change from blood to a straw-colored fluid)

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Maintaining Your Drain



if the drainage becomes bloody again or changes to a milky white fluid



if there is an increase in redness or swelling around the insertion site of the drain



if you are unable to re-establish suction in the drainage system



if you have a fever of over 101.5° F

If the drain tube becomes temporarily obstructed or is not draining properly, you may: •

bend the tubing over your finger



gently squeeze the tube between your thumb and index finger, moving your fingers along the tubing toward the suction bottle, to help dislodge the obstruction or blood clot



use liquid soap or Purell hand sanitizer to help your fingers glide over the tubing. This is called “milking” the tube. You should “milk” the tube twice a day

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The Day of Your Surgery: What to Expect After Surgery What to Expect In the Recovery Room (PACU)

In the recovery room, you will be watched closely and cared for until the effects of your anesthesia have worn off. Most likely this is where you will wake up after your surgery. When you awake you may find that your vision is blurry. This is caused by the medicine used to protect your eyes during surgery. The blurriness will go away in a short time. You may also:

What to Expect Back in Your Hospital Room



receive extra oxygen through a thin tube (nasal cannula) that passes into your nose.



have a Foley catheter to drain your urine into a collection bag.



have a Jackson-Pratt (JP) drain to drain excess fluid from your body.



have special stockings called Sequential Compression Devices (SCDs) that intermittently squeeze your legs to help prevent blood clots and assist your circulation.



have an IV in place. Let your nurse know if you notice any swelling, redness, or irritation at your IV site.



have a dressing over your incision.



have a nasogastric (NG) tube in your nose to help prevent bowel complications while you recover. The NG tube will be removed when your bowel function returns.

When you are stable, you will be brought to the primary nursing unit for urology. The nurses on this unit are trained to care for patients who have had urological procedures. •

Your room will be ready for your arrival after surgery. There will be a bed, a small cabinet, a closet, and a bathroom available for you.



Your nurse will tell you about the hospital routine and check your temperature, pulse, and blood pressure frequently.



You will still be wearing Sequential Compression Device Stockings that will intermittently squeeze your legs to help prevent blood clots and generally aid with your circulation. These will be removed when you are ready to get up and move around.



To help you recover quickly and to prevent complications such as blood clots, the nurses will help you get out of bed the evening of your surgery. The morning after your operation, they will help you take walks down the hall until you can manage on your own.

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How to Manage Your Pain



You will be asked to begin breathing exercises using an incentive spirometer to help you prevent pneumonia and other respiratory complications. Your nurse will review the instructions for using the spirometer and ask you to perform the breathing exercises every hour while you are awake.



You will begin to move from a liquid diet to more substantial foods as you recover. This most likely will take several days.



You can have medicine that will help relieve or decrease your pain so that you can move around more easily and recover faster.



Let your nurses know if you are feeling pain or if the medication given to you is helping (or not helping) the pain. It is important for them to know if you are having any other reaction to the medication in addition to pain relief. Many pain medicines are available, and this information will help your doctor prescribe the best one for you.

What You Can Eat or Drink

You will begin to move from a liquid diet to more substantial foods as you adjust. This may take a couple days.

Tell Your Nurse

Tell your nurse if you experience: •

pain



nausea



difficulty breathing



chills



fever



pain, redness, or puffiness at your IV site

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Pain Management: PCA Pump Overview

Patient-controlled analgesia (PCA) is a pain management method that allows you to control the amount of pain medication you receive. PCA uses a pump to deliver pain medications, either intravenously (a needle inserted into a vein) or as an epidural (a catheter inserted into the space around your spinal cord). A nurse sets the pump’s controls to deliver pain medication as prescribed by your doctor. Depending on what your doctor prescribes, your pain medication may be delivered continuously or only when you activate the pump. The first method also allows you to give yourself additional doses as needed. For both methods, the pump is set to wait several minutes before another dose can be given.

Using a PCA

To activate a PCA pump, press and then release a control button. This will deliver the specific dose of medication determined by your doctor. A PCA may not free you from all pain, but small, frequent doses usually provide steady relief and actually use less pain medication. Use the pump to keep your pain at a level you can tolerate. Do not wait until your pain gets worse to give yourself the pain medication. If you wait too long to give yourself the medication, it may be difficult to get comfortable again and more pain medicine will be required. Friends and family should not take it upon themselves to activate the pump for you, thinking they are helping to relieve your pain. You could end up receiving more medication than you need, which would increase the risk of side effects. Remember, only you know how you feel, so you are the best judge of when you need pain medication.

Possible Side Effects

The side effects of narcotic pain medications can occur whether you receive the medications by mouth or as an injection, IV, or epidural. Tell your nurse or doctor if you experience any of the following: •

nausea



difficulty urinating



confusion



excessive sleepiness



itchiness

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Discharge: Caring for Yourself at Home Discharge

Your doctor will determine when you are able to go home. A nurse or other member of your health care team will give you the following: •

Written discharge instructions: Don’t hesitate to ask your doctor, resident, fellow, or any one else on your health care team for additional help or information.



A prescription for pain medicine: You also may receive stool softener medication and be told to take iron supplements to rebuild your red blood cell count.



An appointment for your first follow-up visit.

Caring for Yourself at Home

Each day following your surgery, you will feel better. Below are general instructions to follow that will aid in your recovery.

Activity

• If there is no dressing on your incision, clean it daily with soap and water. • Increase your activity each day - walk outdoors and use the stairs. • When sitting, prop your feet up on a stool or sit on a recliner to keep your feet elevated and prevent swelling in your lower legs. If swelling occurs, lie in bed and raise your feet on pillows higher than your head. • Do not resume driving until your doctor tells you to. • Do not lift anything heavier than 5 pounds (for example, a six-pack of soda). • Continue to do your incentive spirometer breathing exercises each hour while you are awake. • Return to your usual diet. • To prevent constipation, eat foods high in fiber such as whole-grain bread and cereal or unpeeled raw fruits and vegetables. • Drink 5 to 6 glasses of water or juice every day.

Medications

Take only medicine ordered or approved by your doctor. This may include the prescription medication Hydrocodone/APAP and over the counter medications such as a stool softener and acetaminophen (Tylenol®).

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Call Your Doctor If:

Seek Help Immediately If:



your temperature is above 101°F or you have shaking chills.



you have unusual pain in your belly or kidney area (mid-back) that is not helped by pain medication.



your incision becomes red, swollen, painful, feels hot to the touch, or has pus or foul smelling drainage from it.



your urine is bloody with large blood clots in it (larger than ¼ inch) or is cloudy or foul smelling.



you are vomiting for more than 24 hours.



you have diarrhea (loose stools 3x a day) lasting more than 24 hours



you have new swelling in your legs.

• you suddenly have trouble breathing or start having chest pain. You could have a blood clot in your lung or an allergy to one of your medicines. • you develop severe pain in your abdomen or chest. • you have a change in your level of consciousness, vision or strength. Roswell Park does not have an emergency department. If you live in the Buffalo area and find yourself in an emergency, we ask you to go directly to Buffalo General Hospital, which is adjacent to Roswell Park. We have a cooperative relationship with them and they will take care of you and contact your Roswell Park doctor to coordinate your care. Please bring your green Roswell Park identification card to Buffalo General so they know you are a Roswell Park patient. If you live outside of the Buffalo area, please go directly to your nearest hospital emergency department.

Follow-up Visits

First Clinic Visit Your doctor will review your pathology report in detail during your visit. You may be referred to another doctor, including a medical oncologist or radiation oncologist at Roswell Park. Second Clinic Visit: 4 to 6 Weeks After Surgery Prepare for this appointment by keeping a list of any problems or questions to discuss with your doctor. At this visit, you may be given blood tests and/or be scheduled for additional treatment, if necessary. Third Visit and Beyond Three months after surgery, you may have another cystoscopy and urinary cytology. Urine cytology will continue to be monitored on subsequent follow-up visits. Your doctor will check your vital signs, assess your bladder and bowel function, and address any problems or pain you may be experiencing. See the chart on the next page for the current recommendations on follow-up care.

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Follow Up Visits Stage/Grade

Recommended Follow-up After Surgery

Ta/G1 or 2

Cystoscopy every 3 months. Your doctor will increase the intervals between cystoscopies as appropriate.

Ta/G3

Cystoscopy and urine cytology every 3 months for 2 years; then every 6 months for 2 years; then once a year.

T1/G1,2, or-3; T2

Cystoscopy and urine cytology every 3 months for 2 years; then every 6 months for 2 years; then once a year. Imaging studies (IVP, CT or MRI urography, kidney ultrasound with retrograde pyelogram) of kidneys and ureters every 1-2 years. Urinary tumor markers (optional).

Patients who have not had a radical cystectomy

Follow up with your every 3 months with urine cytology. If cytology during any of these visits is positive, possible additional treatments of BGC or other therapies may be recommended.

Patients who have had a radical cystectomy

Follow up every 3 months: urine cytology, blood tests: liver function tests, creatinine, and electrolytes; and chest x-ray. Imaging studies (CT or MRI urography, kidney ultrasound with retrograde pyelogram) of kidneys and ureters every 1-2 years, then as clinically indicated. For those with a continent diversion, monitoring of vitamin B12 once a year. Your doctor may order a urethral wash cytology every 6-12 months. Your doctor may order follow-up CT scans every 3-6 months for 2 years and then every year after that.

Recurrence after radical cystectomy

Radiation therapy alone or Chemotherapy alone or Chemotherapy and radiation

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Hydrocodone/APAP Other Names

Lortab, Anexsia®, Co-gesic®, Lorcet-HD®, Norco®, Panacet®, Vicodin®, and Zydone®

How is it Administered?

The combination of acetaminophen and hydrocodone comes as a tablet, capsule, or liquid to take by mouth.

What is it Used For?

This combination of drugs is used to relieve moderate to moderatelysevere pain.

What Should I Tell My Doctor Before I Begin Taking Lortab®?

Tell your doctor: •

if you are allergic to acetaminophen, codeine, hydrocodone, sulfa, or any other drugs



if you have or have ever had liver or kidney disease, a history of alcoholism, lung disease, or thyroid disease

This drug may interact with other medications, changing their effectiveness or causing harmful side effects. Tell your doctor and pharmacist about any prescription or over-the-counter medications, vitamins, herbal or diet supplements that you are taking.

How Should I Use Lortab®?



Your doctor will tell you how much of this medicine to use and how often. Do not use more medicine than your doctor tells you.



Take this medicine on an empty stomach. If it upsets your stomach, it may be taken with food.



Do not take extra Tylenol® or acetaminophen when taking Lortab® since Lortab® has acetaminophen in it.



Do not use extra medicine to make up for a missed dose.

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What Are Some Possible Side Effects I May Experience?

Although side effects from acetaminophen and hydrocodone are not common, they can occur. Tell your doctor if any of these symptoms are severe or do not go away:

When Should I Call the Doctor?



lightheadedness or dizziness



drowsiness



upset stomach, stomach pain, or vomiting



constipation



rash or itching



difficulty urinating

Call your doctor immediately if you experience:

What Else Should I Know About Lortab®?



difficulty breathing



mood changes



Too much acetaminophen may cause liver damage. Do not take more than 4000 mg of acetaminophen per day.



Do not let anyone else take your medication. Ask your pharmacist any questions you have about refilling your prescription.



Do not drink alcohol while taking Lortab®.



Avoid driving or operating any machinery.

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Stool Softeners Brand Names

Colace®, Dialose®, docusate, DOS®, Fleet Sof-Lax®, Hemaspan®

How Are They Administered?

Stool softeners come as a capsule, tablet, liquid, and syrup.

What Are They Used For?

Stool softeners are used on a short-term basis to relieve constipation by people who should avoid straining during bowel movements. They soften stools, making them easier to pass.

What Should I Tell My Doctor Before I Begin Taking Stool Softeners?

Tell your doctor:

How Should I Take Them?

• Follow the directions on the package or your prescription label carefully. Take stool softeners exactly as directed by your doctor.



if you are allergic to any drugs



what prescription and nonprescription medications you are taking, especially aspirin and vitamins. Do not take mineral oil while taking stool softeners

• 1-3 days of regular use usually are needed for this medicine to take effect. Do not take stool softeners for more than 1 week unless your doctor directs you to.

What Are Some Possible Side Effects?

When Should I Call the Doctor?

Although side effects from stool softeners are not common, they can occur. Tell your doctor if you experience any of these symptoms: •

stomach or intestinal cramps or upset stomach



throat irritation (from oral liquid)



vomiting

Call your doctor immediately if you experience: •

skin rash (hives)



difficulty breathing or swallowing



fever

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Acetaminophen Brand names

Tylenol®, Anacin-3®, Datril®, Liquiprin®, Panadol®, Tempra®

How is it Administered?

Acetaminophen comes as a tablet, chewable tablet, capsule, liquid, drops, and granules (to be dissolved in water) to take by mouth.

What is it Used For?

Acetaminophen is used to relieve mild to moderate pain and to reduce fever.

What Should I Tell My Doctor Before I Begin Taking It?

Tell your doctor:

What Are Some Possible Side Effects?



if you are allergic to acetaminophen or any other drugs



what prescription and nonprescription medications you are taking, especially carbamazepine (Tegretol®), phenobarbital, phenytoin (Dilantin®), rifampin (Rifadin®, Rimactane®), sulfinpyrazone (Anturane®), and vitamins



if you have or have ever had liver disease and if you have a history of alcohol abuse



if you drink 3 or more alcohol beverages every day, ask your doctor if you should take acetaminophen. You should not drink alcohol beverages while taking acetaminophen

Although side effects from acetaminophen are not common, they can occur. Tell your doctor if you experience a severe or persistent upset stomach. If you experience any of the following, call your doctor immediately: •

any sign of an allergic reaction: rash, hives, or severe skin rash; difficulty breathing or shortness of breath; swelling of your lips, throat, or inside of your mouth; dizziness or fainting



any sign of an overdose: unusual bruising or bleeding (such as bleeding that lasts more than 10-15 minutes); black or bloody stools; vomit that is bloody or looks like coffee grounds; blood in your urine or mucus; spontaneous bleeding from your gums or nose; superficial bleeding into the skin that appears as a rash of pinpoint-sized reddish-purple spots; decrease in amount of urine passed; nausea and/vomiting; fever or sore throat; yellowing of the skin or eyes

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Chemotherapy General Information What is Chemotherapy?

Chemotherapy is a type of cancer treatment that uses drugs to destroy cancer cells. Chemotherapy works by killing the tumor cells or by stopping them from growing.

How is Chemotherapy Given?

The chemotherapy will be administered into a vein (intravenously or IV). A central venous access device (also called a chestport or mediport) may be implanted beneath the skin, usually on your chest, to allow for safe, long-term IV access. Chemotherapy may be given alone or combined with surgery, radiation therapy, or both.

What Can I Expect on the Day I Receive Chemotherapy?

• Blood will be drawn on each day chemotherapy is given so that your doctor can assess your blood components, such as red blood cells, white blood cells, and platelets, to decide whether you are well enough to receive chemotherapy.

What Should I Tell my Doctor Before Beginning Chemotherapy?

Tell your doctor:

Any Precautions I Should Know About?

• Medications for the prevention of nausea and vomiting may be given each day before chemotherapy is administered. This will take an additional 30 minutes. Additional medications, for which you will receive an outpatient prescription to be filled at your pharmacy, may be used if nausea and vomiting occurs after you leave Roswell Park.

• if you recently or currently have an infection, or are being treated with antibiotics • if you are taking any medications at home including prescriptions, herbal supplements, vitamins, minerals, and over-the-counter products Because of the risks caused by bone marrow depression, here are some suggestions to help avoid infection and bleeding problems: • Stay away from crowds or people with colds, flu, or other infections. Wash your hands often, and talk to your doctor before you have any vaccinations (immunizations), such as a flu shot. • Be careful when handling sharp objects. Stay away from rough sports or other situations where you could be bruised, cut, or injured; and use an electric razor. Chemotherapy makes your liver work harder and your liver function may be affected. Your doctor will monitor you while you are receiving chemotherapy by doing blood tests called liver function tests, or LFTs.

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Chemotherapy makes your kidneys work harder and your kidney function may be affected. Your doctor will monitor your kidney’s health while you are receiving chemotherapy by doing regular blood and urine tests. You should not plan to have children while receiving chemotherapy or for a while after treatments. Talk to your doctor for further details. Use a reliable method of birth control to prevent pregnancy. Chemotherapy may harm the fetus.

Mouth Care

Mouth care is very important. Here are some suggestions to help avoid infection and bleeding problems: • Brush your teeth and gums often with a soft toothbrush. Soften it further by running it under warm water before brushing. • Avoid smoking, alcohol, and mouthwashes that contain alcohol. • If you develop mouth sores, rinse your mouth with a mixture of ½ tsp of baking soda in 8 ounces of water after every meal and at bedtime.

What Can I Do to Minimize Side Effects?

It is important to stay well-hydrated in the days leading up to and following chemotherapy. It is recommended you drink at least eight 8 oz. glasses of fluid daily.

When Should I Call My Doctor?

Call your doctor if have: • any sign of infection: fever of 100.5°F (38°C) or higher, chills, cough, sore throat, pain or burning upon urination, or redness or tenderness along a vein, at an IV site, or at any other wound or skin irritation. • any sign of an allergic reaction: itching or hives, swelling in your face or hands, swelling or tingling in your mouth or throat, chest tightness, trouble breathing, dizziness, or palpitations. • unusual bruising or bleeding: bleeding that lasts more than 10-15 minutes or that causes dizziness; black or bloody stools; vomit that is bloody or that looks like coffee grounds; blood in your urine; you cough up blood; unusually heavy menstrual bleeding.

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Chemotherapy Regimen: MVAC Chemotherapy Regimen

Cycle

MVAC stands for: •

Methotrexate (meth-oh-TREX-ate) or Trexall®



Vinblastine (vin-BLAH-steen) or Velban ®



Doxorubicin (dock-sew-RUE-bih-sin) or Adriamycin ®



Cisplatin (sis-PLA-tin) or Platinol AQ®

Typically, the 4 drugs are given by IV over the course of 2 days. This 2day treatment is repeated every 2 weeks. In addition, a medication called pegfilgrastim (peg-fil-GRAS-tim) (Neulasta®) will be given as a subcutaneous (under the skin) injection on day 4 of each cycle of chemotherapy.

Possible Side Effects

Possible side effects include: •

hair loss



swelling (fluid retention or edema), especially in hands, ankles, feet, and face



skin reactions such as rashes



flu-like symptoms such as muscle/body aches and shivering



fever, confusion



weakness



bone marrow depression (increased risk of infection, fatigue, and/or bleeding)



too much or too little of the chemicals normally found in your body such as sodium, calcium, potassium, chloride, and magnesium (electrolyte imbalances)



nausea and vomiting



numbness or tingling in your in hands and feet (peripheral neuropathy)



hearing impairment



mouth and/or throat sores

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Additional Medications

These drugs may be prescribed as needed to prevent/treat nausea and vomiting: • aprepitant (Emend®) • dexamethasone (Decadron®) • prochlorperazine (Compazine®) • lorazepam (Ativan®)

Full descriptions of these drugs, as well as the chemotherapy agents, are available in the Chemotherapy Infusion Center, or you can ask your nurse.

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Chemotherapy Regimen: Gemcitabine/Carboplatin Chemotherapy Regimen

• gemcitabine (jem-SYE-ta-been) or Gemzar®

Cycle

Typically, the carboplatin is given on day 1 and the gemcitabine on days 1, 8, and 15. The cycle is repeated every 28 days.

Possible Side Effects

Possible side effects include:

• carboplatin (car-boe-PLATT-in) or Paraplatin®

• hair loss • swelling (fluid retention), especially in hands, ankles, feet, and face • skin reactions such as rashes • nausea and vomiting • flu-like symptoms such as muscle/body aches and shivering • fever • weakness • bone marrow depression (increased risk of infection, fatigue, and/or bleeding) • too much or too little of the chemicals normally found in your body such as sodium, calcium, potassium, chloride, and magnesium (electrolyte imbalances) • numbness or tingling in your in hands and feet (peripheral neuropathy) • mouth and/or throat sores

Additional Medications

These drugs may be prescribed as needed to prevent/treat nausea and vomiting: • aprepitant (Emend®) • dexamethasone (Decadron®) • prochlorperazine (Compazine®) • lorazepam (Ativan®) • palonosetron (Aloxi®)

Full descriptions of these drugs, as well as the chemotherapy agents, are available in the Chemotherapy Infusion Center, or ask your nurse.

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Chemotherapy Regimen: Gemcitabine/Cisplatin Chemotherapy Regimen



gemcitabine (jem-SYE-ta-been) or Gemzar®



cisplatin (sis-PLA-tin) or Platinol AQ®

Cycle

• One cycle is 28 days. • You will receive gemcitabine on days 1, 8, and 15. The infusion will take about 60 minutes. • You will receive cisplatin on day 2. This infusion will take over 2 hours.

Possible Side Effects

Additional Medications

Possible side effects include: •

hair loss



swelling (fluid retention) especially in hands, ankles, feet, and face



skin reactions such as rashes



flu-like symptoms such as muscle/body aches and shivering



fever, confusion, weakness



bone marrow depression (increased risk of infection, fatigue, bleeding)



too much or too little of the chemicals normally found in your body such as sodium, calcium, potassium, chloride, and magnesium (electrolyte imbalances)



nausea and vomiting



numbness or tingling in your in hands and feet (peripheral neuropathy)



hearing impairment



mouth and/or throat sores

These drugs may be prescribed as needed to prevent/treat nausea and vomiting: • aprepitant (Emend®) • dexamethasone (Decadron®) • prochlorperazine (Compazine®) • lorazepam (Ativan®)

Full descriptions of these drugs, as well as the chemotherapy agents, are available in the Chemotherapy Infusion Center, or you can ask your nurse.

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Chemotherapy Regimen: Taxol Chemotherapy Regimen

paclitaxel (PAK-li-TAK-sel) or Taxol ®

Cycle

Typically, paclitaxel is given by IV infusion on days 1, 8, and 15. The cycle is repeated every 28 days.

Possible Side Effects

Possible side effects include:

Additional Medications



hair loss



swelling (fluid retention or edema), especially in hands, ankles, feet, and face



skin reactions such as rashes



flu-like symptoms such as muscle/body aches and shivering



fever, confusion



weakness



bone marrow depression (increased risk of infection, fatigue, and/or bleeding)



nausea and vomiting



numbness or tingling in your in hands and feet (peripheral neuropathy)



mouth and/or throat sores

The following drugs may be prescribed as needed to prevent/treat nausea and vomiting: • dexamethasone (Decadron®) • diphenhydramine (Benadryl®) • famotidine (Pepcid®) • prochlorperazine (Compazine®) • lorazepam (Ativan®)

Full descriptions of these drugs, as well as the chemotherapy agents, are available in the Chemotherapy Infusion Center, or you can ask your nurse.

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Intravesicular Chemotherapy Overview

This delivery method for chemotherapy medications puts them into the bladder itself. It is most commonly used when people have superficial cancer (cancer on the surface of the bladder that cannot be removed). This has several advantages – stronger doses of some medications may be given, and many of the systemic effects of chemotherapy are avoided or minimized.

What is the Procedure?

A catheter is placed into your bladder. The medication is then put into the catheter into your bladder. The catheter is then removed. You will need to hold your urine for 2 hours. Afterwards, you can urinate and the medication will drain out of your bladder.

What Chemotherapy Medications are Given This Way?

The 3 chemotherapy drugs most commonly placed directly into the bladder are mitomycin (Mutamycin®), doxorubicin (Adriamycin®), and thiotepa (Thioplex®). • Thiotepa is known to prevent cells from replicating. • Mitomycin C is an antibiotic that also prevents cells from replicating. • Doxorubicin works in several ways to kill the cancer cells but also has a higher rate of side effects. Studies have shown that those who had surgery (TUR) and doxorubicin had a 20% lower reoccurrence of their tumor than those who had the surgery without the doxorubicin.

Are there any Side Effects?

Chemotherapy drugs can affect normal cells as well as cancer cells as they travel throughout your body. Placing the chemotherapy drugs within the bladder reduces the possible side effects. Thiotepa can cause you to feel an urgent need to urinate. You may also have painful or difficult urination, moderate to severe nausea/vomiting and cystitis (inflammation of the bladder) Mitomycin C can cause painful urination and increased frequency of urination. Doxorubicin can cause cystitis (inflammation of the bladder), blood in the urine (hematuria), fever, and allergies.

What Else Should I Know?

You should consider your urine toxic for 6 hours after each treatment.

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Immunotherapy: BCG (Bacillus Calmette-Guerin) Overview

Biological therapy (also called immunotherapy) uses the body's natural ability (immune system) to fight cancer. Biological therapy is most often used after TURBT for superficial bladder cancer.

Brand Name

Tice BCG® (there may be other brand names for this medication)

How is BCG Administered?

BCG, which contains live, weakened bacteria, is given by instilling the solution through a tube (catheter) into your bladder. The tube is removed and you will hold the medicine in your bladder for several hours. The bacteria stimulate the immune system to kill cancer cells in the bladder. BCG treatment is usually begun with instillations once a week for 6 weeks.

What Should I Tell My Doctor Before I Begin Receiving BCG?

Tell your doctor if: •

you have had an allergic reaction to BCG



your immune system is weak due to other medicines or illness



you have a fever (unless your doctor knows the cause) or bladder infection



you have liver, lung, or kidney disease, a bone marrow disorder, or any kind of infection



you have been treated with other cancer medicines or radiation



you are pregnant or breastfeeding

This drug may interact with other medications, increasing or decreasing their effectiveness or causing harmful side effects. Tell your doctor and pharmacist about any prescriptions, over-thecounter medications, vitamins, herbal or diet supplements that you are taking.

What Are Some Possible Side Effects I May Experience?

Possible side effects include: • swollen lymph nodes • fever • blood in the urine or frequent or painful urination • upset stomach or vomiting Ask your doctor about medication to help prevent or lessen nausea and vomiting.

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When Should I Call the Doctor?

Call your doctor immediately if you experience: • any sign of an infection: temperature of 101.5 F (38.5 C) or above; chills; sore throat; cough; sores in your mouth; increased, painful, or difficult urination; redness, pain, or swelling at the injection site • any sign of an allergic reaction: rash, hives, or severe skin rash; difficulty breathing or shortness of breath; swelling of your lips, throat, or inside of your mouth; dizziness or fainting Call your doctor as soon as possible if you experience: • bloody urine • urinating more often or feeling like you have to urinate more often • nausea or vomiting.

What Else Should I Know About BCG?

• Treatment with BCG may be given once a week for 6 weeks and every few months afterward, as your doctor orders. • You should not have treatment with BCG if you are using other medicines that weaken your immune system such as prednisone or other steroid medicines. • Before treatment, you should empty your bladder. • For the first hour after the tube is removed from your bladder, you should lie on your back, stomach, and right and left sides for 15 minutes each. • You can get up after the first hour, but hold the medicine in your bladder for 1 more hour. If you are unable to hold it, tell your doctor or nurse. • Drink plenty of water after each treatment. • After each treatment, all patients (men and women) should sit down to urinate the first time. • Any time you urinate in the first 6 hours after treatment, disinfect the urine by adding an equal amount (usually about 1 cup) of household bleach to the toilet bowl and letting it stand for 15 minutes before flushing. • Tell your doctor if you have any changes in urinary habits after treatment with BCG. • Do not get pregnant while you are being treated with this medicine.

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Intravesicular Interferon Therapy How is Interferon Administered?

For people with certain types of bladder cancer, interferon may be placed directly into the bladder, which is called intravesicular interferon therapy. A urinary catheter (a thin flexible tube) is placed through the urethra (the opening where urine leaves your body) and the medication is put through the catheter directly into your bladder. One advantage of intravesicular treatment is that the drugs do not usually spread throughout the body, which limits their effects on other organs.

How Does Interferon Work?

Interferon is a type of immunotherapy; therapy that stimulates your immune system to change the way it responds to cancer cells; or a substance that can improve the body's natural response to infections and other diseases such as cancer. You may also hear the terms “biologic response modifier” or cytokine to classify this medication.

What Should I Tell My Doctor Before I Begin Receiving Interferon Alfa?

Tell your doctor if you: •

have had an allergic reaction to interferon or to benzyl alcohol



have ever had autoimmune hepatitis or any other autoimmune disorder



have a weakened immune system



are taking medicines that affect the immune system such as steroids, chemotherapy, antibiotics, or vitamins



have heart, kidney, or liver disease; depression; or mental illness



are pregnant or breastfeeding

This drug may interact with other medications, increasing or decreasing their effectiveness or causing harmful side effects. Tell your doctor and pharmacist about any prescription or over-the-counter medications, vitamins, herbal or diet supplements that you are taking.

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What Are Some Possible Side Effects I May Experience?

• Flu like symptoms • Muscle aches • Headaches • Fatigue • Fever or chills • Irritation or a burning feeling when the interferon is put into your bladder These problems are temporary and usually improve after treatment is completed.

How Can I Manage These Side Effects?

• Ask your doctor about medication to help prevent or lessen headaches, flu-like symptoms and/or muscle aches. • Spacing out daily activities can help with fatigue. Accept assistance and delegate responsibilities as possible.

When Should I Call the Doctor?

Call your doctor immediately if you experience: • any sign of infection: fever of 100.5°F (38°C) or higher, chills, cough, sore throat, pain or burning upon urination; redness or tenderness along a vein, at an IV site, or at any other wound • any sign of an allergic reaction: itching or hives, swelling in your face or hands, swelling or tingling in your mouth or throat, chest tightness, trouble breathing, dizziness, or palpitations Call your doctor as soon as possible if you experience: • aches, pains, or headache not relieved by prescribed medication • extreme tiredness that interferes with normal activities

What Else Should I Know • This drug may have adverse effects on a pregnancy. Use an effective form of birth control while receiving interferon. About Interferon Alfa? • Be sure to keep all doctor and lab appointments. • If you would like more information about interferon, talk to your doctor.

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Radiation Therapy Overview

Radiation therapy (also called radiotherapy) uses high-energy x-rays to kill cancer cells. Radiation therapy is a local therapy that affects cancer cells only in the treated area. A small number of patients may have radiation therapy before surgery to shrink the tumor. Others may have it after surgery to kill cancer cells that may remain in the area. Sometimes, patients who cannot have surgery have radiation therapy instead. There are use 2 types of radiation therapy used to treat bladder cancer: • External radiation: A large machine outside the body aims radiation at the tumor area. Most people receiving external radiation are treated 5 days a week for 5 to 7 weeks as an outpatient. This schedule helps protect healthy cells and tissues by spreading out the total dose of radiation. Treatment may be shorter when external radiation is given along with radiation implants. • Internal radiation: The doctor places a small container of a radioactive substance into the bladder through the urethra or through an incision in the abdomen. The patient stays in the hospital for several days during this treatment. To protect others from radiation exposure, patients may not be able to have visitors or may have visitors for only a short period of time while the implant is in place. Once the implant is removed, no radioactivity is left in the body. Some patients with bladder cancer receive both kinds of radiation therapy.

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Quality of Life During Cancer Treatment Coping

Coping with a diagnosis of cancer can be an overwhelming experience. When treatment results in changes in the way you look or your sexuality, it may be even more distressing. Recovery is best viewed as a process rather than a single event. Allow yourself time to adjust, and keep in mind that there is not a “right” or “wrong” way to feel. Your partner may also be having difficulties during this time and may share many of your feelings. It is important to maintain open lines of communication. Overall, your adjustment will get better, but you may have fluctuations from day to day. Sometimes there will be a “bad day” where you may feel sad, scared or worried. It is important that you realize that these emotional reactions are normal; many people have these feelings as they move through treatment and recovery.

Sexuality

The diagnosis and treatment of bladder cancer can be very stressful. At times, you and your loved ones may feel a heavy emotional burden. It is not unusual to have problems with your self-concept, your feelings about your sexuality, or with sexual functioning. Openly discussing these issues with your partner and your doctor or nurse is the best way to manage these feelings. Talking can help you regain a sense of control at a time when many people feel they are losing control over important areas of their life. Concerns regarding sexuality are common after cystectomy. For women, surgery may mean removing a part of the wall of the vagina. This would change its size and shape. There may be damage to the nerves in the pelvic area. Sometimes, surgical reconstruction of the vagina is an option. Even without reconstruction, intercourse is still possible and may be made less painful with the use of lubricants. If intercourse is painful, couples can still reach orgasm through other types of stimulation. For men, cystectomy may involve removal of the prostate gland, which may interfere with the ability to get an erection. There are a variety of treatments available to help with this problem. Please ask your doctor about any concerns you have and the options available. Individuals who have had a urostomy may have difficulty coping with changes in their physical appearance. Some practical steps can limit the impact on their sex lives. • Empty your bag before having sex and check that it is sealed appropriately. • Wear a smaller pouch during sexual activity. • Choose positions that keep weight off the ostomy. • Maintain open communication with your partner and be willing to try different solutions.

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Many people find it difficult to discuss sexual problems or changes in their level of sexual interest with their partners and even with their healthcare team. Please try your best to be open about these topics. We deal with many, many individuals who are/were in similar circumstances and may be able to offer significant help.

When to Seek Help

Sometimes, the stress can lead to intensely distressing emotions that need professional attention. Some patients, and/or their partners, can experience periods of sadness or irritability, loss of interest in previously enjoyed activities, hopelessness about the future, anxiety, or changes in sleep or appetite patterns. Again, these responses are not surprising given the difficult and often invasive nature of cancer treatments. One question that is often asked is when to seek professional help. While there are no hard and fast rules that apply to everyone, if you find yourself experiencing distress that:

Psychological Support at Roswell Park



lasts 2 weeks or more, and/or



interferes with your ability to do key tasks at home or work, and/or



interferes substantially with your relationships, you should talk to your healthcare provider to discuss the need for additional help.

Members of Roswell Park’s Psychology Department can offer assistance to help you meet and get through these emotional challenges. A psychologist can meet with you individually, or with a couple or family members. If you would like to meet with a psychologist, let your doctor or nurse know, or contact the Psychology Department at (716) 845-3052.

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Resources and Support Community Cancer Resource Center (CCRC)

At the CCRC, located on the first floor of the hospital and accessible through the Sunflower Café (cafeteria), trained cancer information specialists provide appropriate, accurate, and up-to-date information on cancer screening, prevention, diagnosis, treatment, clinical trials and supportive care. The CCRC’s services include: • yoga, meditation, and teleconferences • public computers with Internet access • wig, hat and scarf boutique • free publications from the National Cancer Institute, American Cancer Society, and other reputable organizations • referrals, both local and national, for support groups, information, etc. • lending library of books, movies, CDs (CD players), and audiobooks • laptops available for loan to patients staying in Roswell Park. To sign out a laptop, the patient must be 18 years of age and have a driver’s license. If you are interested in borrowing a laptop or for more information about our services, please contact the CCRC at (716)-845-8659 or 1-877-ASK-RPCI (1-877-275-7724).

Department of Psychology

The Department of Psychology offers psychological support of cancer patients and their families. Our clinical services include: • comprehensive evaluation of psychological functioning • individual, couples, and family medical psychotherapy • referral to psychology and psychiatry services, if needed For more information on these services, contact the Psychology Department at (716) 845-3052 or ask your nurse or provider for a referral.

Social Work Department

Our licensed Clinical Social Workers and licensed Masters Social Workers are available to assist you and your family members in adapting to the stresses related to your diagnosis including: • counseling services • support groups • health care proxy

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• finances • housing • transportation • community resources • locating rehabilitation facilities. For more information on any of these services, please call the Social Work office at (716) 845-8022.

Pastoral Care

Hospital Chaplains of the Catholic, Protestant and Jewish faith traditions are available for bedside visitation, counsel, consultation, and spiritual guidance. Clergy of other faith traditions are available to the patients for consultation and visitation. Other pastoral care staff members are in house 7 days a week for distribution of Holy Communion for Catholic and Protestant patients as well as for visitation. Catholic and Protestant services are held regularly in the hospital chapel, located in the main hospital, room 1403. For more information call the Pastoral Care Department at (716) 845-8051.

Ostomy Support Group

Where: Meets at Roswell Park Cancer Institute, Ethel Chandler Conference Room, 8th floor, Main Hospital. Day: Second Tuesday of each month Time: 1:00 – 2:00 pm For more information, please call Lucia Scarpino at (716) 845-8506 or Melissa Hiscock at (716) 845-4891.

Gilda’s Club WNY

Gilda’s Club WNY provides a place where people whose lives have been touched by cancer can join with others for social and emotional support as a supplement to their medical care. There are activities for men and women as well as Noogieland for children and teens, free of charge and non-profit, Gilda’s Club offers support and networking groups, lectures, workshops, and social activities. Gilda’s Club WNY is located at 1140 Delaware in Buffalo. For more information, please call (716) 332-5900.

American Cancer Society (ACS)

The ACS offers many services to those with cancer, as well as their caregivers and loved ones: • Support Groups: I Can Cope® and Look Good…Feel Better® • Mary’s Room: Women in active cancer treatment can get a new, free wig • Road to Recovery: Transportation to and from treatment facilities • Hope Lodge®: Free housing for patients and their families

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• Website: www.cancer.org: Includes the Cancer Survivor’s Network® (a virtual community), news, and resources • 24-hour Information line: Cancer information specialists 24/7 @ 1800-ACS-2345 For more information on any of these services, call the local ACS office in Amherst, NY at (716) 689-6981.

Cancer Wellness Center

The Cancer Wellness Center is a wellness community for those touched by cancer offering services including education and emotional support. The Cancer Coach Program provides support and encouragement to cancer patients and their loved ones through trained volunteers who have recovered from similar cancer diagnoses. Spirituality and Healing programs meet monthly at Daemen College. The programs provide significant support for those whose lives have been touched by cancer. For more information on these programs, call the Cancer Wellness Center at (716) 694-1395.

Web Resources

• Roswell Park Cancer Institute www.roswellpark.org Information about Roswell Park, your healthcare team, cancer and treatments options, support services, and our clinical trial search tool. • Roswell Park Online Community www.cancerconnect.com/roswellpark Roswell Park’s online community is a comprehensive, supportive experience for people with cancer and their caregivers, friends, and anyone else whose life has been touched by cancer. Our integrated community provides support, networking, information, and access to national groups that are specific to a type of cancer or a cancer-related topic. Connect with people who share your experiences, and tap into the knowledge of those who have been in your shoes. CancerConnect knows you do not need to face this battle alone. • What You Need to Know about Bladder Cancer www.cancer.gov/cancertopics/wyntk/bladder/ This National Cancer Institute (NCI) publication describes symptoms, diagnosis, and the treatment of bladder cancer. It also has information to help patients cope with the disease. • People Living with Cancer (PLWC) www.cancer.net/portal/site/patient PLWC is the patient information website of the American Society of Clinical Oncology (ASCO). It provides timely, oncologist-approved information to help patients and families make informed health-care

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decisions. They also offer additional general information on lab tests, diagnostic testing and imaging, pathology, etc. Bladder Cancer Screening www.cancer.gov/cancertopics/pdq/screening/bladder/patient This document details screening procedures that may be used for bladder cancer. MedlinePlus® http://medlineplus.gov/ This website from the National Library of Medicine (NLM) brings together information from government agencies and health-related organizations. Bladder Genetics, Causes, and Risk Factors www.cancer.gov/cancertopics/prevention-genetics-causes/bladder NCI website that provides links to information related to bladder cancer prevention, genetics, and risk factors. Treatment Guidelines for Bladder Cancer www.nccn.org/patients/patient_gls/_english/pdf/NCCN%20Bladder%20 Guidelines.pdf This National Comprehensive Cancer Network (NCCN) publication provides patients with information on the way bladder cancer is treated at the nation's leading cancer centers. Bladder Cancer Treatment http://www.cancer.gov/cancertopics/pdq/treatment/bladder/patient This document details treatment options for patients with bladder cancer. It is available in patient or health professional version. Urostomy Guide www.cancer.org/docroot/CRI/content/CRI_2_6x_Urostomy.asp An American Cancer Society publication that offers suggestions and ideas for managing your urostomy. Nutrition in Cancer Care www.cancer.gov/cancertopics/pdq/supportivecare/nutrition This website offers information from the National Cancer Institute on cancer treatments and nutrition-related side effects. Bladder Cancer Advocacy Network (BCAN) www.bcan.org BCAN is dedicated to improving public awareness and increasing research funding for bladder cancer. United Ostomy Associations of America (UOAA) www.uoaa.org UOAA is a national network for bowel and urinary diversion support groups organized for the benefit of people who have intestinal or urinary diversions and their caregivers. Cancer Care http://www.cancercare.org Cancer Care provides free access to telephone support groups. They also offer free counseling services online or in person for those who need one on one support.

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• Cancer Hope www.cancerhopenetwork.org A not for profit organization that provides free, confidential support to people with cancer and their families. They match patients with trained volunteers who have themselves undergone a similar experience. • Fertile Hope www.fertilehope.org Fertile Hope is a national nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients whose medical treatments present the risk of infertility.

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