Kidney Cancer Patient Handbook · Kidney Cancer Patient Handbook Urology and Institute for Prostate...

Kidney Cancer Patient HandbookUrology and Institute for Prostate and Urologic Cancers

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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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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.

Neurosurgeons: Surgeons who treat cancer that has spread to the brain or spine.

Orthopedic surgeons: Surgeons who treat cancer that has spread to the bones.

Thoracic surgeons: Surgeons who treat cancer that has spread to the lungs.

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.

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: 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.

Your Care Team

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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.

Clinic Information

Urology and Institute for Prostate and Urologic Cancers

Address: University of Minnesota Health Clinics and Surgery Center909 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 Center14101 Fairview Dr., Suite 200Burnsville, MN 55337

Clinic hours: Monday–Friday: 8 a.m. to 4:30 p.m.

Phone: 952-460-4074

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Kidney Cancer and Treatment

What are kidneys?

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.

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.

What are the risk factors for kidney cancer?

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.

• 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

• A lump in your belly (abdomen)

• Weight loss you can’t explain

• Pain in your side

• No interest in food.

Kidneys

Ureters

Bladder

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How do you diagnose kidney cancer?

We may use the following tests and exams to find cancer. Pictures are taken of the kidneys and sometimes the chest or brain.

Ultrasound

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.

Physical exam and health history

This includes:

• Blood test: We check your blood for signs of cancer.

• Urine test: We check your urine sample for sugar, protein, red and white blood cells.

• 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.

To lymph or organs

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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.

Stage 2 cancer

• Larger than 7 centimeters (about 3 inches)

• Found only in the kidney.

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).

Stage 4 cancer

• Has spread beyond the kidney and fat, into the adrenal gland or organs such as lung or liver.

Kidneys

Main blood vessel

To lymph or organs

Adrenal gland

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?

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

• Diarrhea (loose or watery stools)

• Urinating (peeing) more often, sometimes with burning

• Feeling tired

• Bloating or gas pains

• Bleeding or scarring of tissue

• Trouble passing urine

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.

Side effects

• Vomiting (throwing up)

• Diarrhea (loose, watery stool)

• Feeling tired

• Increased risk of infection

Biologic therapy

What is it?

This therapy uses the immune system to fight cancer. Certain proteins are used to strengthen the body’s natural defenses.

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

• 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.

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


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Risk of dying within 10 years



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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 in-depth 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)

Resources

http://www.aakp.org/

http://www.aakp.org

http://www.cancer.org/docroot/home/index.asp

http://www.cancer.org

http://www.cancer.net

http://www.urologyhealth.org

http://www.kidneycancer.org/

http://www.kidneycancer.org

http://www.medlineplus.gov

http://www.cancer.gov/

http://www.cancer.gov/

http://www.nccn.org

http://www.umphysicians.org

http://www.amazon.com/Janet-R.-Walczak/e/B002P9HFCK/ref=ntt_athr_dp_pel_1

http://www.amazon.com/s/ref=ntt_athr_dp_sr_2?_encoding=UTF8&field-author=Michael A. Carducci&search-alias=digital-text

http://www.amazon.com/s/ref=ntt_athr_dp_sr_1?_encoding=UTF8&field-author=Steven C. Campbell&search-alias=digital-text

http://www.amazon.com/s/ref=ntt_athr_dp_sr_4?_encoding=UTF8&field-author=Brian I. Rini&search-alias=digital-text

http://www.amazon.com/s/ref=ntt_athr_dp_sr_3?_encoding=UTF8&field-author=Robert G. Uzzo&search-alias=digital-text

http://www.amazon.com/s/ref=ntt_athr_dp_sr_2?_encoding=UTF8&field-author=Brian Lane&search-alias=digital-text

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A

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.

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.

C

Cancer A mass of abnormal cells that grow and divide without control.

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.

Glossary

D

Downsizing Reducing the size of the tumor.

E

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.

M

Malignant Cancer.

Metastasis The spread of cancer cells from its first site to other areas of the body through the lymph or blood systems.

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

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.

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.

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.

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