Download Kidney Cancer Patient Handbook

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Kidney Cancer Patient Handbook
Urology and 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
Kidney Cancer and Treatment.............................................................................. 5
Resources............................................................................................................... 12
Glossary................................................................................................................. 13
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Welcome to Urology and Institute for Prostate and Urologic Cancers
It is overwhelming to receive the news that you have kidney 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 and the Kidney Cancer Program,
University of Minnesota Health
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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.
Urologists: Doctors who treat male and female
urinary systems and the male reproductive system.
The doctors treat kidney cancer with surgery and
other procedures.
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.
Neurosurgeons: Surgeons who treat cancer that has
spread to the brain or spine.
Social workers: They help you with emotional,
social and financial issues. They offer resources and
community support.
Orthopedic surgeons: Surgeons who treat cancer
that has spread to the bones.
Financial counselors: They can help you with
financial questions and issues.
Thoracic surgeons: Surgeons who treat cancer that
has spread to the lungs.
Supportive Cancer Care: This group focuses 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.
Radiation oncologists: Doctors who treat cancer
with radiation therapy.
Medical oncologists: Doctors who treat cancer
with medicines such as chemotherapy or targeted
therapies.
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.
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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.
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Kidney Cancer and Treatment
What are kidneys?
What are the risk factors for kidney cancer?
The kidneys are near the back of the body under
the ribs. Each one is about the size of a fist. Kidneys
remove waste from the blood and turn it into urine
(pee). Urine travels from the kidneys through thin
tubes (ureters) to the bladder where it is stored until
you use the toilet.
The risks are higher if you:
• Smoke.
• Use too much pain medicine over a long time
(this includes over-the-counter pain killers).
• Are male.
Kidneys
• Have a close relative who had the disease.
What are the symptoms?
Kidney cancer does not often have early symptoms.
Some signs are:
• Blood in your urine
Ureters
Bladder
• A lump in your belly (abdomen)
• Weight loss you can’t explain
• Pain in your side
• No interest in food.
What is kidney cancer?
Cancer is made up of cells that do not grow
normally. The cells divide and make new cells the
body does not need. The most common type of
kidney cancer grows as a mass, or tumor. It is called
renal cell cancer.
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How do you diagnose kidney cancer?
Physical exam and health history
We may use the following tests and exams to
find cancer. Pictures are taken of the kidneys and
sometimes the chest or brain.
This includes:
Ultrasound
• Urine test: We check your urine sample for sugar,
protein, red and white blood cells.
This machine makes pictures with sound waves. The
sound waves bounce off tissues in the body and the
computer changes the sound waves into images.
CT scan or PET/CT
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.
First, we may give you a fluid called contrast that is
swallowed or injected. This helps us see the organs
or tissues better.
Sometimes you may have both CT and PET scans.
The PET can capture images of cells and so detect
early changes in the tissues.
MRI (magnetic resonance imaging)
This machine uses a magnet, radio waves and a
computer. It makes a series of pictures that allow us
to see inside the body.
• Blood test: We check your blood for signs of
cancer.
• Liver test: We check the number of liver enzymes.
Biopsy
We use a needle to take small pieces of tissue, guided
by a CT scan or ultrasound. A doctor then looks at
the tissue under a microscope.
There is a risk of bleeding, and you may see blood in
your urine for 24 hours or less.
We cannot be sure it is cancer until we remove more
tissue during surgery.
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What are the stages of kidney cancer?
Stage 1 cancer
• 7 centimeters (2.5 to 3 inches) or smaller
• Found only in the kidney.
Kidneys
Stage 2 cancer
• Larger than 7 centimeters (about 3 inches)
• Found only in the kidney.
Main blood vessel
Stage 3 cancer
• Has spread beyond the kidney to a lymph node,
the fat around the kidney, or in the main blood
vessel (renal vein).
Adrenal gland
Stage 4 cancer
• Has spread beyond the kidney and fat, into the
adrenal gland or organs such as lung or liver.
To lymph or organs
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How do you choose a treatment plan?
Your treatment plan depends on your age, general
health and the stage of the cancer. Treatment may
include surgery, radiation, chemotherapy or biologic
therapy. You and your doctor will create a plan
that may include one or more of the treatments
described below.
Active surveillance
In many cases, the best course is to watch the cancer
and treat it only if it starts to grow quickly. We
closely watch the cancer, using ultrasound, CT or
MRI. This may be a good choice if your tumor is
small or your health makes surgery too risky.
If the cancer grows or your health improves, we may
change your treatment.
Surgery
Surgery may involve removing the cancer and some
of the tissue around it (partial nephrectomy). The
rest of the kidney is saved and will still work.
The other type of surgery involves removing all of
the kidney and fat around it (nephrectomy). The
adrenal gland and nearby lymph nodes may need to
be removed as well.
Methods of surgery:
• Laparoscopic: We remove the cancer or kidney
through small incisions.
• Robotic: We use a surgical robot to remove a
kidney or cancer through small incisions.
• Open: Large incisions are made to remove very
large cancer tumors or cancers that have grown
into a blood vessel.
Cryotherapy: This method kills the cancer cells by
freezing them. A needle is inserted through the skin.
The needle becomes ice-cold and freezes the cancer
cells. This method is typically used with tumors less
than 3.5 cm (centimeters) in size. The surgeon may
use a CT scan to guide the needle. No incisions are
made and the pain is mild.
Another approach uses a number of small incisions
and then inserts the needles.
After surgery
Many patients need only surgery to treat the cancer.
But, some patients will have chemotherapy or
radiation to kill any cancer cells that are left.
If both kidneys are removed, the person will need
dialysis (treatment where a machine cleans the
blood) or a kidney transplant. A transplant may
be done if the cancer was only in the kidney and a
donated kidney can be found.
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Other treatments
Many of these treatments have side effects. Please
talk to us about your side effects. We can suggest
ways to relieve them.
Radiation therapy
What is it?
Chemotherapy
What is it?
Special drugs kill the cancer cells or stop them from
growing. Drugs in the form of pills or injections
enter the blood and fight cancer cells throughout the
body. To fight cancer in one area, the drug is injected
into the spine or an organ, such as the kidney.
High-energy X-rays kill cancer cells or keep them
from growing. We use radiation to treat cancer that
has spread to other organs or the bones. We do not
use it to treat cancer in the kidney.
Side effects
Side effects
• Feeling tired
• Diarrhea (loose or watery stools)
• Increased risk of infection
• Urinating (peeing) more often, sometimes with
burning
Biologic therapy
• Feeling tired
What is it?
• Bloating or gas pains
This therapy uses the immune system to fight cancer.
Certain proteins are used to strengthen the body’s
natural defenses.
• Bleeding or scarring of tissue
• Trouble passing urine
• Vomiting (throwing up)
• Diarrhea (loose, watery stool)
During treatment, patients stay in the hospital where
we watch them closely for side effects.
Side effects
• Fever, chills and fatigue (feeling very tired)
• Flu-like symptoms
• Infection
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Targeted therapy
What is it?
This therapy uses drugs to attack cancer cells
without harming normal cells. It stops blood vessels
from forming, starves the tumor and shrinks it. This
may be used to treat advanced cancer.
Side effects
Risk of dying within 10 years of treatment
The blocks of circles below shows a best estimate
of what happens to 100 people with kidney cancer
over 10 years. Each circle stands for one person. The
shaded circles show the number of deaths. The white
circles show the number living.
Stage 1 patients: 12 deaths, 88 living
• Dry skin, rash
• Loss of interest in food
• Joint pain
• Change in taste
Arterial embolization
(ar-TEAR-ee-ahl em-boh-luh-ZAY-shun)
What is it?
This is a way to shrink the tumor. A catheter (thin
tube) is inserted into the blood vessel that flows to
the kidney. Small pieces of a plug or coil are injected
into the blood vessel. This blocks the blood flow to
the kidney and stops the cancer cells from growing.
Side effects
• Pain
• Low fever
• Possible return of cancer
Research
Clinical trials are research that tests new treatments
with patients. The goal is to find safer or better ways
to treat cancer. Talk to your doctor if you think you
might want to take part in a clinical trial. Today,
kidney cancer research is focused on targeted
therapy, cancer vaccines and supportive care.
Stage 2 patients: 38 deaths, 62 living
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Risk of dying within 10 years
Stage 3 patients: 65 deaths, 35 living
Stage 4 patients: 86 deaths, 14 living
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Resources
Websites
American Association of Kidney Patients
www.aakp.org
Information about kidney disease and kidney
failure and treatments, including dialysis and
transplantation.
American Cancer Society
www.cancer.org
A great resource on kidney cancer. This site gives
basic information about how cancers grow and the
possible treatments.
American Society of Clinical Oncology
www.cancer.net
Complete information about kidney cancer with indepth details on all aspects of kidney cancer care.
American Urological Association
www.urologyhealth.org
Kidney Cancer Association
www.kidneycancer.org
Provides important resources for kidney cancer
patients. It coordinates support groups, including
one in the Twin Cities. Offers quality educational
material. “We Have Kidney Cancer” is excellent and
can be ordered or downloaded from its website.
Medline Plus
www.medlineplus.gov
National Cancer Institute
www.cancer.gov
Includes a broad range of information and a listing
of clinical trials.
National Comprehensive Cancer Network
www.nccn.org
Urology Department
www.umphysicians.org
Books
Johns Hopkins Patients’ Guide to Kidney Cancer, by
Janet R. Walczak and Michael A. Carducci (2010)
100 Questions & Answers About Kidney Cancer, by
Steven C. Campbell, Brian I. Rini, Robert G. Uzzo,
and Brian Lane (2009)
We have Kidney Cancer: A Practical Guide for
Patients and Families, by Kidney Cancer Association
(2011)
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Glossary
A
C
Adjuvant therapy
Treatment given in addition to the main treatment.
It is intended to destroy any cancer cells that may
remain after the initial therapy.
Cancer
A mass of abnormal cells that grow and divide
without control.
Anesthetic
A drug that causes a feeling of numbness, usually
used during surgical procedures.
Antibody
A protein produced by immune system cells. The
protein is released into the blood to defend against
foreign agents, such as bacteria.
Anticancer drug
A drug that attacks cancer cells.
Atypical
Not usual; abnormal. Often refers to the way cancer
or pre-cancer cells appear.
B
Benign
Not cancer. A term used for cancer that is generally
not life threatening and does not spread to other
parts of the body.
Biopsy
The removal of a sample of tissue to see whether
cancer cells are present.
Bladder
The hollow organ that stores urine.
Bone scan
An imaging method that detects cancer that may
have spread to the bones.
Cancer vaccine
Treatments that help the immune system fight
cancer.
Capsule
A layer of cells around an organ.
Carcinoma
Most common form of cancer. Invasive, deadly cells
that grow in surface tissues of an organ or the skin.
Catheter (urinary)
A thin, flexible tube through which fluids enter or
leave the body. For example, a tube to drain urine.
Cell
A basic unit of the body. The structure and function
of cells vary.
Chemotherapy
Treatment with drugs that destroy cancer cells.
Clinical trials
Studies conducted on patients to evaluate a new
treatment.
Cyrotherapy
Repeated freezing and thawing of the tumor cells
that causes the cells to die.
Cystoscopy
An exam of the inside of the bladder with a special
tool, called a cystoscope.
D
M
Downsizing
Reducing the size of the tumor.
Malignant
Cancer.
E
Metastasis
The spread of cancer cells from its first site to other
areas of the body through the lymph or blood
systems.
Early detection
The disease is found at an early stage, before it has
grown large or spread to other sites.
F
Foley catheter
A catheter (tube) with a balloon at the end that
is inserted into the body. The balloon holds the
catheter in place. Used to drain urine after surgery.
I
Incontinence
Loss of control over urine.
Investigational therapy
Therapies that are being evaluated for treating a
disease or condition.
L
Laparoscopic lymph node dissection
Test using a laparoscope to remove tissue through
small incisions. The tissue is studied to find cancer
in lymph nodes.
Lymph
A clear fluid that drains waste from cells. The
lymphatic system collects and returns the fluid to the
blood.
Lymphadenectomy
Surgical removal of lymph nodes.
Lymph nodes
Small bean-shaped structures scattered along the
vessels of the lymphatic system. The lymph nodes,
also called lymph glands, filter waste and protect the
body from infection.
N
Neoadjuvant
Therapy that is given before primary treatment in
order to improve the outcome.
O
Oncologist
A doctor who specializes in treating cancer.
P
Palliative treatment
Treatment to prevent and relieve suffering and
improve quality of life, without regard to the stage of
a disease.
Pathologist
A doctor who specializes in the diagnosis of disease.
Primary cancer
Cancer that begins at one site in the body, rather
than having spread there from another site.
Primary treatment
The first and usually the most important treatment.
Prognosis
A prediction of the course of disease.
R
Radiation therapy
Treatment with high energy rays to kill or shrink
cancer cells.
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Radio frequency ablation (RFA)
This is a technique similar to cryotherapy, but rather
than freezing the tumors, it kills cells with heat.
Recurrence
Cancer that has returned after treatment.
Refractory
Refers to a disease that can no longer be controlled
by the treatment program.
Remission
Complete or partial disappearance of the signs and
symptoms of cancer after treatment.
S
T
Tumor
Over growth of cells resulting in a lump or mass of
tissue that may or may not be cancer.
U
Urethra
The tube through which urine travels to the outside
of the body.
Urologist
A doctor who specializes in disease of the male sex
organs and in diseases of the urinary organs in both
men and women.
Screening
The search for disease, such as cancer, in people
without symptoms.
Stage
A term used to describe the size and extent of the
spread of cancer.
Supportive care
Reducing side effects from cancer treatment in order
to improve a person’s comfort.
For informational purposes only. Not to replace the advice of your health care provider. Developed in collaboration with University of Minnesota Physicians.
Image of kidneys, ureters and bladder adapted from copyright © 1989, Medical College of St. Bartholomew’s Hospital, London.
Images of kidneys adapted © Skypixel | Dreamstime.com. Text copyright © 2013 Fairview Health Services. All rights reserved. SMARTworks 521645 – REV 02/16.