Download Bladder Cancer Patient Handbook

Page 1 of 15
Bladder Cancer Patient Handbook
Institute for Prostate and Urologic Cancers
Contents
Welcome to Urology and Institute for Prostate and Urologic Cancers........... 2
Your Care Team...................................................................................................... 3
Clinic Information.................................................................................................. 4
Bladder Cancer and Treatment............................................................................. 5
Resources............................................................................................................... 11
Glossary................................................................................................................. 12
Page 2 of 15
Welcome to Urology and Institute for Prostate and Urologic Cancers
It is overwhelming to receive the news that you have bladder cancer. This handbook will
help you understand this disease as well as learn about treatment options.
Most important, this handbook will give you the information you need to take your first
steps toward managing your cancer. You and your loved ones can learn what you need to
know to make the best decisions for you. You are not alone. Your medical care team will
educate and support you throughout your treatment.
This is your handbook, so please write down questions and highlight details as you wish. If
possible, bring it with you to all of your appointments.
The entire staff hopes that you will remain connected with us. We are here to help you live
a full and balanced life after diagnosis. Thank you for choosing University of Minnesota
Health for your care.
– The Staff of the Urology Department, University of Minnesota Health
Page 3 of 15
Your Care Team
We would like to tell you something about the role
of each member of your care team. Your care team
will help you in many ways and may include:
Urologists: Doctors who treat the urinary and male
reproductive systems.
Radiation oncologists: Doctors who treat cancer
with radiation therapy.
Medical oncologists: Doctors who treat cancer with
medicines such as chemotherapy or hormones.
Physician’s assistants (PAs): They have advanced
medical training and may perform exams and treat
you. They work with a doctor to provide your care.
Care coordinators: RNs who help plan your care
and assist your family.
Medical assistants: They help the provider in clinic.
Dietitians: They can help you make a plan for
healthy eating to improve your general health.
Social workers: They help you with emotional,
social and financial issues. They offer resources and
community support.
Financial counselors: They can help you with
financial questions and issues.
Supportive Cancer Care: They focus on the physical,
emotional and spiritual needs of people with cancer.
Their goal is to improve the quality of life for cancer
patients and their families.
Page 4 of 15
Clinic Information
Urology and Institute for Prostate and
Urologic Cancers
Address:
University of Minnesota Health Clinics
and Surgery Center
909 Fulton St. SE, 4th Floor
Minneapolis, MN 55455
Fax: 612-676-4041
Clinic hours:
Monday–Friday: 7 a.m. to 7 p.m.
Saturday: 8 a.m. to 12 p.m.
Phone: 612-625-6401
Scheduling: Choose 1
Nurse Line: Choose 3
Call Monday–Friday, 8 a.m. to 5 p.m.
After hours, call 612-273-3000
Ridges Cancer Clinic
Address:
Fairview Ridges Specialty Center
14101 Fairview Dr., Suite 200
Burnsville, MN 55337
Clinic hours:
Monday–Friday: 8 a.m. to 4:30 p.m.
Phone: 952‑460‑4074
Urology and Institute for Prostate and
Urologic Cancers
Go to University of Minnesota Health Clinics and
Surgery Center. Our clinic is on the 4th floor.
Valet parking
Enter the main arrival plaza from Fulton Street.
Valet costs $6 for each visit. No tips are accepted.
Self-parking
Enter the main arrival plaza from Fulton Street.
From there, a parking attendant will direct you to
the best parking option. To get the best rate, bring
your parking ticket with you and pay for parking
before you leave the Center.
Getting to and from the main hospital
Use the Patient and Family Shuttle to travel between
the Center and the main hospital. The shuttle picks
up and drops off at the main entrance of each
building. Hours:
• Monday through Friday, 5 a.m. to 8 p.m.
• Saturday, 5:30 a.m. to 1 p.m.
Ridges Cancer Clinic
Parking
The patient parking ramp is on the south side of the
Fairview Ridges Hospital. Parking is free.
Page 5 of 15
Bladder Cancer and Treatment
What You Need to Know
What is a bladder?
What are the risk factors for bladder cancer?
The bladder is a hollow organ in your lower belly
(abdomen) that stores urine. Urine is made by the
kidneys and then carried to the bladder through
tubes called ureters. The bladder stores urine before
it leaves the body through the urethra.
Known risks are:
• Smoking.
• Being exposed to certain substances at work,
such as rubber, some dyes and textiles, paint, and
hairdressing products.
• Eating a diet high in fried meats and fat.
• Being older, male or white.
What are the symptoms?
• Blood in the urine (rusty to bright red in color).
Kidney
Bladder
Ureter
Urethra
What is bladder cancer?
Bladder cancer is made up of cells that do not grow
normally. The cells divide and make new cells that
the body does not need. These cells form a mass of
tissue, or tumor, in the bladder.
The wall of the bladder is made up of layers. Cancer
begins in the inner layer and may grow into the
bladder wall.
Most bladder cancers start in the inner lining of the
bladder and have not invaded the bladder muscle
at the time they are found. If the cancer has grown
into the wall of the bladder, your treatment will be
more aggressive.
• A need to urinate (pee) often or feeling the need
to urinate without being able to do so.
• Pain when you urinate.
• Lower back pain.
Page 6 of 15
How is bladder cancer diagnosed?
The following tests and exams may be used to
find cancer:
CT scan (CAT scan): This machine is a computer
linked to an X-ray machine. It takes a series of
pictures that allow us to look inside the body. The
scan creates images of the body in cross sections,
much like slices of bread. We may inject a fluid
called contrast into one of your veins. This helps us
see the organs or tissues better.
Urine test: You give a urine sample. The lab checks
the color, sugar, protein, and blood cells. The lab
also looks for any abnormal cells.
Internal exam: The doctor inserts gloved fingers into
the vagina or rectum (if the patient is male) to feel
for lumps.
Cystoscopy: This test looks for problems inside the
bladder and urethra. First, we numb the area with
medicine. Then we insert a thin tube through the
urethra into the bladder. The tube has a tiny lens and
light on the end (cystoscope).
What are the stages of bladder cancer?
If we find cancer cells, more tests will be done to
see if the cancer has spread. This is called staging.
Staging helps guide treatment and gives you some
idea of what to expect in the future.
The stages for bladder cancer are:
• Stage 0: Tumor is only in the bladder lining.
• Stage 1: Tumor is in the bladder lining, but does
not reach the muscle layer.
• Stage 2: Tumor is in the muscle layer of the
bladder.
• Stage 3: Tumor goes past the muscle layer into
tissue around the bladder.
• Stage 4: Tumor has spread to nearby lymph nodes
or to distant sites (metastatic disease).
Stage 2
Stage 3
Biopsy: A biopsy for bladder cancer is usually done
during cystoscopy while you are sedated or asleep.
The scope also has a tool to remove tissue samples.
These are checked under a microscope for signs of
cancer. Sometimes we are able to remove the entire
tumor during a biopsy.
Stage 1
Stage 0
Stage 4
Tumors may spread into nearby areas, including
the prostate, rectum, ureters, uterus or vagina (see
drawings on page 8).
Cancer may also spread to lymph nodes in the
pelvis, or to other parts of the body, such as the
bones, liver or lungs.
Page 7 of 15
How do you form a treatment plan?
Treatment depends on the stage of the cancer,
your symptoms and general health. Some newer
treatments are being tested in clinical trials. Your
plan may include one or more of the treatments
described below.
Surgery to remove the tumor
(TURB, or transurethral resection of bladder)
How is it done?
A cystoscope (a thin, lighted tube) is inserted into the
bladder through the urethra. A tool with a small wire
loop on the end removes or burns away the tumor.
TURB in women.
Side effects
Problems are unusual, but may include:
• Infection of the urinary tract (UTI) or bladder.
We may give you antibiotics to help prevent this.
Drinking extra fluids will help reduce your risk of
an infection.
• Trouble passing urine. You will usually have
a catheter (bladder tube) for the first 24 hours
after surgery.
• Another surgery if:
ȤȤ The tumor is not completely gone, or it returns.
ȤȤ The urethra, bladder or bladder wall are
damaged during surgery.
TURB in men.
Page 8 of 15
Sometimes, the cancer has spread outside the
bladder and cannot be totally removed. In this case,
we may remove the bladder to reduce symptoms.
Surgery to remove the bladder
(radical cystectomy)
What is it?
The bladder and lymph nodes are removed. This
surgery may be done when the bladder cancer
invades the muscle wall, or when a surface cancer
involves a large part of the bladder.
What should I expect?
This surgery is usually done through an incision
(cut) in the belly (abdomen). In some cases, we
will do laparoscopic surgery. This surgery uses
several smaller cuts and long, thin instruments.
One of these has a tiny video camera on the end.
Laparoscopic surgery may also be done with a robot
attached to the instruments.
Side effects:
Bladder
• Bleeding.
Seminal
vesicles
Prostate
Men with late-stage cancer may have the prostate
and seminal vesicles removed.
Ovaries
Uterus
Bladder
Vagina
Women with late-stage cancer may have the
uterus, ovaries and part of the vagina removed.
• Infections.
• Urine leaking.
• Blocked urine flow.
• Sexual side effects.
If your bladder is removed
When the bladder must be removed, the surgeon
creates another way for urine to leave the body. The
three options are ileal conduit, urinary pouch and
neobladder. These surgeries are discussed in detail in
the booklet, Bladder Cancer Surgery.
Page 9 of 15
Radiation therapy
Chemotherapy
What is it?
What is it?
We uses high-energy X-rays to kill or stop cancer
cells from growing.
We use drugs to stop the growth of cancer cells. The
drugs kill the cells or stop them from dividing.
What should I expect?
What should I expect?
A cat scan shows images of the area to help us know
where to direct the X-ray beams.
The drugs are given two ways: through the
bloodstream or locally. The drugs fight cancer cells
throughout the body when they are taken by mouth
or given in a shot. The drugs kill cancer cells directly
by being placed into the bladder through a small
tube. The form of chemotherapy you receive will
depend on the type and stage of the cancer.
Side effects:
• Diarrhea (loose or watery stools).
• Burning when you urinate (pee) or going
more often.
• Blood in the urine.
Side effects:
• Vomiting (throwing up).
• Erectile dysfunction (problems getting or keeping
an erection).
• Diarrhea (loose or watery stools).
• Some loss of pubic hair.
• Feeling tired.
• Feeling tired.
• Increased risk of infection.
• Bloating or gas pains.
• Bleeding or scarring of the bladder or rectum.
• Trouble passing urine.
• Irritated rectum or an urgent need to pass stool.
Page 10 of 15
Immunotherapy
What are the side effects?
What is it?
Side effects tend to increase with each treatment. You
may not notice any until after the third treatment.
Common side effects include:
You are given medicine that triggers your immune
system to attack and kill the cancer cells.
The most common chemotherapy drug used in this
treatment is called BCG. This consists of bacteria
that we inactivate before placing in your bladder.
• Irritated bladder. This will last 1 to 3 days after
a treatment.
• The urge to urinate (pee) often.
What should I expect?
• Blood in the urine.
The medicine is sent into the bladder through a
Foley catheter (bladder tube). A nurse gives the
treatments in the clinic. Treatment is once a week for
6 weeks. In some cases, it will be given for another 3
weeks. Booster treatments are given every 6 months
for up to 2 years.
• Bladder infection.
During each treatment:
• Symptoms of infection, including:
• You will lie down.
• First, a numbing gel is put into the urethra. Then
a small tube (catheter) is placed in your bladder
through your urethra.
• As the medicine fills your bladder, you may feel
pressure. In order to work, the medicine must
cover the inside of the bladder.
• After your bladder is full of medicine, you
will go home and wait two hours, then empty
your bladder.
When the weeks of therapy are finished, you will
have a biopsy and cystoscopy (page 6) to check
the results.
Other side effects:
• Fever, chills and fatigue.
• Flu-like symptoms.
ȤȤ High fever, over 103°F (39°C) when taken
under the tongue.
ȤȤ Night sweats.
ȤȤ Feeling very tired.
ȤȤ Fever above 101°F (38°C) that lasts for more
than 2 days.
Call your care team right away if these side effects
last more than 48 hours or get worse. Be sure to keep
all follow-up appointments.
Page 11 of 15
Resources
Websites
American Cancer Society
www.cancer.org
American Urological Association (AUA)
www.urologyhealth.org
Bladder Cancer Advocacy Network
www.bcan.org
Bladder Cancer Webcafe
www.blcwebcafe.org
International Ostomy Association
www.ostomyinternational.org
Medline Plus
www.medlineplus.gov
National Cancer Institute
www.cancer.gov
United Ostomy Associations of America (UOAA)
www.uoaa.org
Urology Department
www.umphysicians.org
Books
Parallel Journeys: A Spirited Approach to Coping and
Living with Cancer, by Dr. Larry Lachman and Ric
Masten (2003)
100 Q&A About Bladder Cancer (100 Questions
&Answers) by Pamela Ellsworth, John A. Heaney
and Oliver Gill (2002, second edition 2008)
The Guide to Living with Bladder Cancer by Mark P.
Schoenberg, M.D., F.A.C.S. and the faculty and staff
of the Johns Hopkins Genitourinary Oncology Group
Page 12 of 15
Glossary
A
B
Adjuvant therapy
Treatment given after the main treatment. The
purpose is to destroy cancer cells that may remain.
Benign
Not cancer. A term for a tumor that is usually not
life-threatening and does not spread to other parts of
the body.
Alkaline phosphatase
An enzyme made by bone and liver cells. Blood
levels of alkaline phosphatase often go up when
cancer has spread to the bones or liver.
Biopsy
The removal of a tissue sample to see whether cancer
cells are present.
Anesthetic
A drug that causes a loss of feeling or numbness. It is
used during some surgeries.
Antibody
A protein made by the immune system. It enters
the blood to defend against foreign agents, such as
bacteria.
Anti-cancer drug
A drug that attacks cancer cells.
Anus
The opening at the lower end of the rectum through
which solid body waste passes.
Artificial sphincter
Prosthesis or device used to treat loss of bowel
control.
Atypical
Not usual; abnormal. Refers to the way cancer or
pre-cancer cells appear.
Bladder
The hollow organ that stores urine.
Bone scan
Pictures that show where in the bones the cancer
may have spread.
C
Cancer
A tumor with abnormal cells that grow and divide
without control.
Carcinoma
Common type of cancer. A malignant tumor that
grows in the surface tissues of an organ or the skin.
Catheter (urinary)
A thin, flexible tube through which urine leaves the
body.
Cell
The basic unit of the body. All tissue is made of cells.
Chemotherapy
Cancer drugs that destroy cancer cells.
Page 13 of 15
Clinical trials
Studies done on patients to test a new treatment.
Impotence
The inability to have or keep an erection. See Erectile
Dysfunction.
Conformal proton beam radiation
Radiation therapy using protons.
Incontinence
Loss of control of urine.
Cytoscope
A thin tube with a light for viewing the bladder. May
be used to looks for cancer cells. With added tools, it
may do a biopsy or remove cancer cells.
Cystoscopy
Exam of the bladder using a cystoscope. This device
is a thin tube with a tiny camera and light.
D
Downsizing
Decrease in the size of a tumor.
Investigational therapy
The study of a therapy while using it to treat disease.
L
Laparoscope
A tube with a light on the end. It is inserted into the
body and allows the doctor to see internal organs.
Laparoscopic lymph node dissection
Removal of nodes to look for cancer. This is done
through small incisions with a laparoscope.
Libido
Sex drive.
E
Early detection
Finding cancer cells at an early stage, before they
have grown or spread to other sites.
Erectile dysfunction
The inability to have or keep an erection. See
Impotence.
External beam radiation
Radiation therapy that uses rays from a source
outside the body.
F
Foley catheter
A catheter with a balloon at the end that holds the
catheter in place. A Foley is inserted through the
urethra to drain urine after bladder surgery.
I
Immunotherapy
Treatment using medicine that triggers the immune
system to attack cancer cells.
Lymph
The fluid collected from body tissues and returned
to the blood by the lymphatic system. The lymph
system drains waste from cells.
Lymphadenectomy
Removing lymph nodes by surgery to look for
cancer cells.
Lymph nodes
Small bean shaped structures scattered along the
vessels of the lymphatic system. Also called lymph
glands. They remove waste, which protects the body
from infection.
M
Malignant
Cancerous.
Metastasis
The spread of cancer cells from their site of origin to
other areas of the body. The cells spread through the
lymph or blood systems.
Page 14 of 15
Prostatectomy
Surgery to remove the prostate gland.
N
Neoadjuvant therapy
Therapy given before the main treatment in order to
improve the results.
R
Radiation therapy
Treatment in which high energy rays kill or shrink
cancer cells.
O
Oncologist
A doctor who treats cancer.
Radical cystectomy
Removal of the bladder. This requires creating
another way for urine to leave the body. Sometimes
involves removal of nearby organs.
Ovaries
The two female organs that produce sex hormones
and store eggs for fertilization.
Rectum
Lower part of the large intestine leading to the anus.
P
Palliative treatment
Therapy to relieve symptoms but not intended to
cure disease or extend life.
Recurrence
Cancer that returns after treatment.
Refractory
A disease that can no longer be controlled by the
treatment program.
Pathologist
A doctor who diagnoses disease by studying cell
samples.
Perineum
In men, it is the area between the scrotum and the
anus. In women, it is the area between the vaginal
opening and the anus.
Remission
When all or most of the signs of cancer have gone
away.
S
Pituitary gland
A gland located at the base of the brain. It controls
the release of other hormones in the body.
Screening
Tests to find disease, such as cancer, before there are
symptoms.
Primary cancer
Cancer that began at a specific place in the body. It
did not spread there from another site.
Scrotum
Pouch of skin that holds the testicles.
Primary treatment
The first and usually the most important treatment.
Semen
Fluid released during sexual climax. It contains
sperm and seminal fluid.
Prognosis
A prediction of the course of a disease.
Seminal vesicles
Pouches located above the prostate that store semen.
Prostate gland
A round gland about the size of a walnut. It sits below
the bladder and holds some of the seminal fluid.
Stage
Describes the size and extent of the spread of cancer.
Page 15 of 15
Staging
Testing to determine how far the cancer has spread.
The results are used to guide treatment.
T
V
Vagina
Female organ that connects to the uterus and
through which blood flows during a period. It is
muscular and expands during sex or childbirth.
Testicles (testes)
The male glands found in the scrotum. They make
sperm and testosterone.
Transurethral resection of the bladder tumor
(TURBT)
Surgery to remove cancer cells from the bladder
while leaving the bladder intact.
Tumor
Over growth of cells that create a lump or mass of
tissue. This mass may or may not be a cancer.
U
Ureters
Tubes that carry urine from the kidneys to the
bladder.
Urethra
The tube running from the bladder to the outside of
the body. Urine flows through it.
Urologist
A doctor who treats diseases of the sex organs in
men and urinary organs in both men and women.
Uterus
Female organ where embryos grow into babies until
birth. It connects to the vagina.
For informational purposes only. Not to replace the advice of your health care provider. Developed in collaboration with University of Minnesota Physicians.
Images: Stages of cancer © Sebastian Kaulitzki, Male and female reproductive systems © Andreus | Dreamstime.com.
Text copyright © 2012 Fairview Health Services. All rights reserved. SMARTworks 521352 – REV 02/16.