[Note: The following information is excerpted from the book “We Have Kidney Cancer,” published by the Kidney Cancer Association. All rights reserved, reprinted courtesy of the Kidney Cancer Association.]
“I have kidney cancer. What now?”
Your doctor has just told you that you have cancer. Your mind whirls with emotion. Suddenly, you are facing a health crisis. Now, more than ever, you need to think clearly, despite strong emotions.
This book contains information from scientists, physicians and other health professionals who are experts in understanding and treating kidney cancer. The goal of this book is to help you face the challenge of kidney cancer by helping you become better informed.
Your ability to think, to use information, and to make choices about treatment can help bend the odds in your favor. Reading this book is the first step.
This section provides you with brief background information about kidney cancer and some immediate resources that may be helpful. The chapters that follow provide more in-depth information, ranging from current surgical and therapeutic approaches to practical advice for living with cancer day to day.
Improving your health starts right now!
You Are Not Alone
In 2008, it is estimated that more than 1.4 million new cancer cases were diagnosed in the United States.1 The American Cancer Society estimates that as many as 54,000 of yearly U.S. cancer cases are individuals diagnosed with kidney cancer.2
Still, there is hope: An estimated 100,000 to 200,000 kidney cancer survivors are living in the United States right now.3
Recent advances in diagnosis, surgical procedures, and treatment options will allow even more patients to live with the disease, continuing to maintain their normal schedules and lifestyles.
2005 marked the beginning of an important new era for kidney cancer patients, with the approval by the Food and Drug Administration (FDA) of two oral drugs to treat this disease. A third drug was approved in 2007 and three additional drugs were approved in 2009. These drugs, which are discussed later in this book, target cancer cells in different ways than previous drugs used to treat kidney cancer, and will have a very positive impact for many patients. Continued research efforts will improve our understanding of the disease even more and increase the options available to fight kidney cancer.
Each person diagnosed with kidney cancer goes through the shock of being told they have the disease. It is a difficult experience. Feelings of disbelief, loneliness, alienation, fear, frustration, anger, and hurt are natural parts of any life- threatening illness. It is okay to have these feelings, to cry, and to be upset.
After your diagnosis, it’s time to start healing. Don’t let your emotions and your cancer damage your home life or relations with the important people in your life. They may also be hurting inside, fearing for you and themselves. When cancer strikes, it hits the whole family. Your friends and family will play an important role as you fight this disease.
Sometimes kidney cancer is called by its medical name, renal cell carcinoma. Renal is from the Latin word renalis for kidneys. Kidney cancer appears in various forms, including clear cell, papillary, sarcomatoid, transitional cell, and others. These will be explained in more detail later in this book.
Some patients are diagnosed before the cancer has metastasized (spread) to other parts of the body, while others have metastatic disease when their cancer is initially diagnosed. If patients have metastatic disease, either surgery or systemic medical therapy – that is, a treatment that is injected into the bloodstream or swallowed – may be recommended first, depending on the patient’s situation. If surgery is done first, additional treatment may be recommended to treat metastatic disease or to delay the cancer’s return.
The choice of treatment, where treatment is administered, the frequency of check-ups, and many other aspects of the management of your disease are determined with input from you. The more you know, the better your decisions, and the more you can feel in control of your illness. Knowledge about your disease will help you better communicate with your doctor and nurse, and increase your confidence in the treatment that you receive. Getting smarter about kidney cancer is an important step in effectively fighting your disease.
How to Learn More About Kidney Cancer
Your own doctor can be one of the best sources of information about your disease and its treatment. Doctors who specialize in treating cancer are known as oncologists. After an initial diagnosis is made, don’t be afraid to ask your doctor many questions. You should also consider getting a second opinion from another doctor who is a kidney cancer specialist.
If you do not know the name of a specialist, you may obtain names from the Kidney Cancer Association (email the request via the Association’s website at www.kidneycancer.org or by calling
1-800-850-9132). Your doctor should not be offended if you seek a second opinion. It is common practice. In fact, your doctor often gives second opinions to other patients and to colleagues. You may not need to have tests repeated because often the results of your previous tests can be sent to the second doctor. Rarely will a second opinion change your diagnosis, but it can give you useful information and fresh insights about treatment alternatives. In addition, your insurance company may require a second opinion. If you are in a health maintenance organization (HMO), you should find out about its policy concerning second opinions. You’ll find more information about working with your doctor in the chapter of this booklet titled “Patient Empowerment.”
The Kidney Cancer Association
The Kidney Cancer Association is available to assist you in many ways, including providing written information on the disease, treatment options, and resources. You can contact the Kidney Cancer Association at 1-800-850-9132, or visit its web-site at www.kidneycancer.org. The Kidney Cancer Association’s website has valuable information that you can read, print, or share with family and friends.
A special note about 'We Have Kidney Cancer'
The Kidney Cancer Association publishes a book titled “We Have Kidney Cancer,” which is an essential resource for kidney cancer patients. Now in its fourth printing, the book is updated every few years. While this book offers the most current information about kidney cancer at the time of its printing, it is possible that new information and treatments may now be available and are not part of the current edition. For that reason it is always a good idea to check the Kidney Cancer Association website for the latest information and updates that might be important. An electronic version of “We have Kidney Cancer” is available at the website and any updated sections of the book are clearly marked. The book is available at http://www.kidneycancer.org/download-we-have-kidney-cancer/
Kidney cancer patients can learn a great deal from one another. The best way to do that is to attend a patient meeting sponsored by the Kidney Cancer Association or support groups sponsored by your local hospital. Support groups provide excellent open environments for frank exchange with other patients and professional counselors.
The National Cancer Information Service
No matter where you live in the United States, you can call 1-800-4-CANCER, the toll-free telephone number of the National Cancer Information Service. You can also contact the information service through its website at http://cis.nci.nih.gov/. This information service is provided by the National Cancer Institute, which is part of the National Institutes of Health (NIH). The NIH is operated by the U.S. Department of Health and Human Services. You can ask for a variety of free booklets.
There are many other websites that can help you understand the disease and its diagnosis, treatment options, dealing with the illness and side effects of treatment, work, and coping with a life-threatening diagnosis. A list of trusted websites is included later in this book (Chapter 9). You must be careful because some medical information on the Internet is posted by nonprofessionals and is not reliable. Always check the site to learn more about the source of any information provided. Look for well-known, established sources online and don’t rely on just one website. Reputable sites with reliable information for patients are sometimes accredited (approved) by a governing body such as “Health on the NET.” In any case, use common sense and compare sites carefully when considering online material.
Once you have a basic understanding of your disease, you may want to go to the library and dig into medical books and journals. More and more research is being done as scientists and physicians gain new knowledge about how kidney cancer develops and spreads, in order to improve our ability to treat and cure more patients. Nursing literature may be helpful to understand the treatment options and management of side effects.
A simple paperback medical dictionary can help you understand many of the terms and abbreviations you will encounter as you learn more about kidney cancer. Check your local bookstore.
Conferences and Meetings
The amount of research on kidney cancer being presented at national and international physician and nursing conferences and published literature reporting research results have increased significantly in the past five years. There are many meetings devoted to education and open dialogue, and researchers are continually discovering new information about kidney cancer. Doctors and nurses will provide you with this information as they discuss treatment options and care during the course of your treatment.
What Caused your Kidney Cancer?
Most cancers are related to chance events. Mutations in individual cells result in disordered cell growth. But some external factors, such as smoking and obesity, have also been related to a higher incidence of kidney cancer. In an attempt to answer the question “Why me?” some people want to identify such factors as a cause for their cancer. Although it is important for people to know what factors or behaviors are associated with an increased risk of kidney cancer, blaming yourself for past behavior is neither helpful nor healing. The fact that a person’s behavior included a risk factor such as smoking doesn’t necessarily mean the factor caused the cancer.
Inherited Kidney Cancer
Genetic factors have been linked to an increased risk of developing kidney cancer. For example, a hereditary disorder called von Hippel-Lindau (VHL) disease is associated with a high risk of developing kidney cancer.4
Scientists have isolated the gene responsible for VHL disease, and this discovery offers exciting future possibilities for improved diagnosis and treatment of some kidney cancers.5
Another genetic mutation thought to be associated with RCC is tuberous sclerosis. It is a disease characterized by small tumors of the blood vessels that results in numerous bumps on the skin, mental retardation, seizures, and cysts in the kidneys, liver, and pancreas.6
The Birt-Hogg-Dubé syndrome is another disorder associated with kidney cancer that is characterized by the presence of multiple small bumps (nodules) on the skin covering the nose, cheeks, forehead, ears, and neck.7
Information and Fear
Some patients don’t think that actively seeking information about their disease will do any good. They think that whatever their doctor says is all they want or need to know. Others are afraid to learn more about kidney cancer. Information about survival statistics particularly frightens them. It is important, however, to remember that these statistics are based on population averages and are often several years old by the time they are published. Therefore, the most up-to-date information and factors that affect the risks and benefits of treatment may not be published. Your doctor and nurse will give this information to you. Asking questions is a very important way to reduce fear and anxiety and is the only way to truly empower yourself to make the best decisions regarding treatment for your kidney cancer.
Some patients believe that information about kidney cancer is presented in complicated medical terms they won’t be able to understand. But a great deal of information, including the resources recommended in this book, is specifically written for patients in easy-to-read language that requires no specialized training to understand. Doctors and nurses will be very willing to answer your questions, because the more you understand, the better you will be able to participate as an active member of your health-care team.
We think that learning more about the disease and your treatment choices will help you. History has shown that assertive patients who actively work to overcome cancer often increase the odds of survival, live longer, and enjoy life more. You can be a passive victim or an active fighter. The choice is yours. Our recommendation is to fight. Don’t surrender!
What Kidneys Do
The kidneys are located on each side of your body, toward the back, at the bottom of your rib cage. They are surrounded by fatty tissue, which serves to cushion and protect them. An adrenal gland is located on the top of each kidney. Kidneys come in pairs but you can live a normal life with only one kidney.
Each kidney weighs about 8 ounces and measures 4 to 5 inches long by 2 to 3 inches wide. The adult kidney is curved in the shape of a kidney bean with an indentation in the center where the renal artery, renal vein, and ureter connect. Blood enters the kidney through the renal artery and exits through the renal vein. The main job of the kidneys is to filter the blood and cleanse the body of waste products such as urea, excess salt, and other substances. The fluid which the kidneys excrete and which contains these dissolved waste products is called urine. The urine drains through the ureter, a long, slender tube connecting the kidney to the bladder.
The kidney is encased in a membrane called the capsule. This membrane is flexible and stretches when a tumor is formed inside the kidney. If diagnosed early, the tumor may remain inside the capsule and can be more easily treated by surgical removal of the kidney. Early diagnosis is aided by knowing the symptoms of kidney cancer and seeing your doctor as soon as possible.
Chapter 1: Introduction
American Cancer Society, Estimated New Cancer Cases and Deaths by Sex for All Sites, 2008; available at www.cancer.org
American Cancer Society, Estimated New Cancer Cases and Deaths by Sex for All Sites, 2008; available at www.cancer.org
National Cancer Institute, Surveillance, Epidemiology and End Results (SEER), Cancer of the Kidney and Renal Pelvis; available at http://seer.cancer.gov/statfacts
Neumann HP, Bender BU, Berger DP, et al. Prevalence, morphology and biology of renal cell carcinoma in von Hippel-Lindau disease compared to sporadic renal cell carcinoma. J Urol. 1998;160:1248-1254.
Gnarra JR, Lerman MI, Zbar B, Linehan WM. Genetics of renal¬cell carcinoma and evidence for a critical role for von Hippel-Lindau in renal tumorigenesis. Semin Oncol. 1995;22:3¬8.
Urology Forum; Kidney Cancer; available at http://www.urologychan-nel.com/kidneycancer/benign.shtml Accessed January 6, 2007.
Zbar B. Renal cancer and skin tumors: the Birt Hogg Dube syndrome. Kidney Cancer News. 2000;XI:5.
©Copyright Kidney Cancer Association, 2012