Introduction: I have a Kidney Mass — What do I do now? Your doctor has just given you the news that there is a growth in your kidney. What is it and what does this mean for you? Our kidneys’ main job is to filter our blood. Sometimes we develop masses (growths or tumors) inside our kidneys. Some of these growths are cancerous, many are not. You must have your mass checked out to learn if it is cancerous or not. Don’t delay getting treatment. There are many different options for treatment, and usually more choices for an early diagnosis. Your medical team is there to help you. They can help you learn more about the pros and cons of treatments. This guide will tell you about localized kidney masses and the steps that you can take if one forms in your body. 4 What do the Kidneys do? Our kidneys serve many purposes, but they mainly do the following: • Detoxify (clean) our blood • Balance fluids • Maintain electrolyte levels (e.g., sodium, potassium, calcium, magnesium, acid) • Remove waste (as urine) • Make hormones that help keep our blood pressure stable, make red blood cells and keep our bones strong What is a Kidney Mass? A tumor, or mass, is an abnormal growth in the body. A kidney mass, or tumor, is an abnormal growth in the kidney. Some kidney masses are benign (not cancerous) and some are malignant (cancerous). One in four kidney masses are benign. Smaller masses are more likely to be benign. Larger masses are more likely to be cancerous. Some tumors can be slow to grow while some can be aggressive. Aggressive tumors usually form, grow and spread very quickly. Most kidney growths (about 40%) are small, localized masses. Localized means that the tumor has not spread out from where it first started. The main classes of tumors are: • Renal Cell Carcinomas (RCC). These are the most common malignant kidney tumors. They are found in the lining of the small tubes in the kidney. RCC may form as a single tumor within a kidney or as two or more tumors in one kidney. • Benign kidney tumors. About 20% of tumors removed from kidneys are benign. There are about nine named tumors in this class. Some can grow quite large but they are almost always non-cancerous and do not spread to other organs. • Wilms tumor. Wilms tumors almost always occur in children and are rarely found in adults. GET THE FACTS *All words that appear in blue are explained in the glossary. 5 What do we Know about Kidney Cancer? There will be close to 65,000 new cases of kidney cancer in the U.S. in 2018. Of those cases, nearly 15,000 people will likely die from the disease. More of those who die will be men. Kidney cancer is more common in African Americans, American Indians and Alaskan Native people. You can get kidney cancer at any age but it is more common in older people (those greater than 75 years old). The earlier kidney cancer is diagnosed—the better your chances of survival. What Causes a Kidney Mass? There is no known cause for developing a kidney mass. But, there are a number of things that can increase your risk for kidney tumors such as: • Smoking (men smokers have a higher risk than women smokers) • Obesity, poor diet • Family history of high blood pressure • Being on kidney dialysis • Workplace exposure to chlorinated chemicals • Heredity What are the Symptoms of a Kidney Mass? Most kidney masses have no symptoms in the early stages. However, if there are symptoms, they will most likely be: • Hematuria (blood in urine) • Flank pain between the ribs and hips • Low back pain on one side (not caused by injury) and that does not go away • Loss of appetite • Weight loss not caused by dieting • Fever that is not caused by an infection and does not go away • Anemia (low red blood cell count) Over half of kidney masses are found by chance. Often they are found during generic screening or when you see a doctor about some other problem. If your regular doctor thinks you may have kidney disease they might send you to a urologist. A urologist is a doctor who specializes in the urinary system. How is my Kidney Mass Diagnosed? There are no routine laboratory tests to find kidney masses. Your healthcare provider may use many tests and procedures to make a diagnosis. Here are some tests and procedures that you might expect: • Physical exam and history • Basic or complete metabolic panel (CMP), also called a blood chemistry • Complete Blood Count (CBC) to check for certain substances • Urinalysis to check for infection, blood and protein in urine • Kidney function tests to check how well the kidneys are working. They show if the kidneys are getting rid of waste the right way. • Ultrasound exams take pictures of your kidneys and organs. • CT scan and MRI for diagnosing and staging localized kidney masses • Bone Scan and Chest X-Ray to find out if the cancer has spread • Kidney mass biopsy: A biopsy may be done to find out what type of tumor you have. A biopsy is when cells or tiny parts of an organ are removed and studied. A pathologist views the sample under a microscope. Findings can tell if the tumor started in another part of your body or if it started in the kidney. A biopsy may also tell if there is an infection such as an abscess. GET DIAGNOSED 6 What does Tumor Grade and Stage Mean? A tumor grade tells how aggressive the cancer cells are. A tumor stage tells how much the cancer has spread. The grades 1 through 4 show increasing severity with “1” being the lowest level and “4” the highest. A higher grade and more advanced stage usually come with larger tumor size and more aggressive tumors. Tumor size helps in assessing risk for cancer developing. Kidney cancer is staged using the tumor node metastases (TNM) system. • T tells us the size of the main (primary) tumor and whether it has grown into nearby areas. o T1: Tumor 7.0 cm (about 2.8 inches) or less, only in the kidney o T1a: Tumor 4.0 cm (about 1.6 inches) or less, only in the kidney o T1b: Tumor 4.0-7.0 cm, only in the kidney o T2: Tumor greater than 7.0 cm, only in kidney o T2a: Tumor greater than 7.0 cm and less than 10.0 cm, only in the kidney o T2b: Tumor greater than 10 cm (about 3.9 inches), only in the kidney o T3: Tumor grows into major veins but not into the adrenal gland and not beyond Gerota’s fascia o T4: Tumor reaches beyond Gerota’s fascia (including the adrenal gland). This is not a localized tumor. • N tells us how much it has spread to nearby (regional) lymph nodes. Lymph nodes are small bean-sized collections of immune system cells. o N0: No regional lymph node metastasis o N1: Metastasis in regional lymph node(s) • M tells us about metastasis ¾ whether the cancer has spread (metastasized) to other parts of the body. Spread is most common to the lungs, bones, liver, brain, and far off lymph nodes. o M0: No distant metastasis o M1: Distant metastasis • Stage I and II tumors include cancers of any size that are only inside the kidney. • Stage III tumors are either locally invasive (T3) or involve lymph nodes (N1). This is cancer that is only found within the kidney organ. • Stage IV tumors have spread beyond the kidney into organs nearby (T4) or distant metastases (M1). T1 T3 T2 T3b T4 T4b 7 Have an open and frank talk with your healthcare team about your treatment choices. The main goal in treating kidney masses is to protect kidney function where possible. This is especially important for patients with only one kidney or some other kidney disease. For some, surgery will never be needed. For others, surgery may be the best choice. Your doctor may recommend one of four treatment choices. These are: • Active surveillance • Partial nephrectomy • Radical nephrectomy • Renal tumor ablation Active Surveillance For active surveillance, your provider will see you at intervals for tests and imaging (taking pictures of inside your body). Active surveillance is considered for small masses less than 3 cm (about 1.2 inches) in size. The goal is to prevent progression and avoid potential risks and negative effects of other treatments. Your visits will be every 3-, 6- or 12-month intervals as necessary. Chest x-rays will be done, as well as CT scans and ultrasounds as indicated. How often you see your provider will depend on tumor size and stage. Partial Nephrectomy Nephrectomy means removal of the kidney. Partial nephrectomy means that the doctor removes the tumor and/or diseased part of the kidney and leaves the healthy part. If your tumor is at T1a stage (4cm or less) your doctor may recommend a partial nephrectomy. A partial nephrectomy can also be done for larger tumors. A doctor will do a biopsy of the tumor to see if it shows signs of getting worse. Radical Nephrectomy During a radical nephrectomy, the whole kidney is removed. This is done if your kidney tumor shows signs of becoming cancerous or is very large. Your body can function well with one kidney if the other is removed. Surgery for both types of nephrectomy can be done by laparoscopy. During laparoscopy, your surgeon makes a very small hole in your abdomen and threads a thin, lighted tube to the site to look at the kidney. If your lymph nodes are affected, your surgeon will examine the node for staging. Ablation If your tumor is small (T1a mass less than 3 cm in size), your surgeon may consider ablation. Ablation destroys the tumor with extreme heat or cold. Your doctor will do a biopsy before ablation so a pathologist can look closely at the tumor cells to see if there is cancer. Cryoablation (cold ablation) is when very cold gases are passed to the tumor through a probe that destroy the tumor cells. Radiofrequency ablation (hot ablation) is when a thin, needle-like probe is placed through the skin to reach the tumor. An electric current is passed through the tip of the probe. This heats the tumor and destroys the cells. Care Management Your healthcare team is likely to have several different medical professionals such as a radiologist, urologist, neurologist, a pathologist and a medical oncologist. These specialists will work with you to consider all your choices and discuss the risks and benefits of treatment. You should have a urologist to help coordinate evaluation, counseling and care management. Genetic counseling might also be recommended if you have a family history of kidney tumors. GET TREATED 8 Make sure that you stay in touch with your healthcare provider and keep follow-up appointments as directed. These check-ups are important to watch for re-growth of tumors. After initial treatment, your doctor may perform many of the same tests used to diagnose the kidney mass. Keep copies of your records with you in a binder so that you have them if you change healthcare providers. Consider placing the following in the binder: • Copies of pathology reports from all of your biopsies and procedures • Copies of imaging test results (CT or MRI scans, etc.) • Copies of your treatment summaries • Contact information for the healthcare providers who treat you A healthy lifestyle is important. If you smoke now, quit smoking. Limit your alcohol intake. Eat a balanced diet, with lots of green leafy vegetables and occasional fatty fish. Exercise and try to keep your weight within recommended limits.

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Prostate Cancer Basics

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The prostate is a walnut-shaped gland that is part of the male reproductive system. It surrounds the urethra, the tube that carries urine and semen out of the body. The prostate makes fluid for semen to help protect and energize the sperm.

Prostate cancer starts when cells in the prostate gland begin to grow uncontrollably. Risk factors for prostate cancer include age, family history and race. One in seven men will be diagnosed with prostate cancer. Your chance of being diagnosed increases to:

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• 1 in 5 if you are African-American; and

• 1 in 3 if you have a family history of the disease.

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Early stages of prostate cancer usually don't cause symptoms. Men who do have symptoms, such as trouble urinating, may have a non-cancerous growth of the prostate called benign prostatic hyperplasia (BPH) or another common condition called prostatitis, which is an inflammation of the prostate. It's important to go to your doctor for regular check-ups about your prostate health and to talk to them about any changes in your urinary or sexual function.

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There are two common tests to check the health of the prostate: the digital rectal exam and a blood test, called Prostate-Specific Antigen (PSA). PSA is a protein made by the prostate gland. A high level of PSA can be a sign of prostate cancer, but it can also be a sign of other prostate conditions, like BPH or prostatitis.

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If prostate cancer is detected early-before it has spread outside of the prostate gland-it is more likely to be treatable. However, certain prostate cancer treatments can cause side effects. These side effects may include incontinence or erection problems. That is why in some cases, doctors recommend starting with active surveillance instead of other treatments, such as surgery and radiation.

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How Does Active Surveillance Work?

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Active surveillance is a type of close follow-up. It usually involves regular PSA tests and digital rectal exams to determine if the cancer is growing. It may also include prostate biopsies (tissue samples), which initially confirmed your prostate cancer and can now help predict how quickly the cancer is likely to grow and spread. If these tests show your cancer is growing, your doctor may discuss other forms of treatment with you.

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As part of a standard biopsy, the doctor collects tissue samples by poking a thin needle, guided by ultrasound, into different areas of the prostate. With this procedure, 12 samples of prostate gland tissue are collected - 6 samples from the right side and 6 samples from the left side. However, these random biopsies can sometimes miss the cancer and its growth, which is why newer tests are helping doctors to be more precise in their findings, as well as their prediction about whether a man's prostate cancer is growing," Dr. O'Reilly says.

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A biopsy test called fusion-guided biopsy is one of those newer tests. It fuses detailed MRI scans with live, real-time ultrasound images of the prostate. It begins with the patient undergoing an MRI. If the radiologist finds suspicious areas on the scan, the doctor will then use a software program to guide the biopsy needle precisely to where the suspicious area was seen. Genomic tests are another promising development for prostate cancer assessment. These tests look at the DNA of the cancer, to help doctors better predict its growth.

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There is no universal agreement about how often tests should be done for men under active surveillance, says Keith J. O'Reilly, MD, FACS, a urologist with Chesapeake Urology in Westminster, Maryland. "If we decide a patient is very low risk, we'll check his PSA every six months. And 12 to 18 months after diagnosis, we'll usually do another biopsy. What we find will determine how often we test. Because there's no approved standard, we tailor it to our patients," he says.

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Who Is a Candidate for Active Surveillance?

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Men diagnosed with prostate cancer may be candidates for active surveillance if they:

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• are diagnosed with an early stage of prostate cancer that has not spread beyond the prostate

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• are not experiencing symptoms

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• have prostate cancer that is slow-growing

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• are older or have other serious health conditions which may interfere with prostate cancer treatment.

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What Are the Pros and Cons?

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The benefit of active surveillance is that it's a low-cost, safe option, with no side effects, that enables you to maintain your day-to-day quality of life. "Most men are relieved when I tell them they don't need treatment right away," Dr. O'Reilly says.

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The risk of active surveillance is that the cancer can grow and spread to other parts of the body between doctor visits. This could make the cancer more difficult to treat.

Some men decide they do not want to live with even a small risk that the tumor could become more aggressive. They would prefer to accept the risk of side effects from other forms of treatment in order to remove or destroy the cancer.

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"I tell my patients that cancers are like dog breeds - there are Chihuahuas and there are pit bulls," Dr. O'Reilly says. "If we find that we're dealing with a Chihuahua, then I recommend active surveillance."

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Living with Active Surveillance: A Patient's Story

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When Carl Snook, a now retired middle school principal, was diagnosed with early-stage prostate cancer four years ago, he talked his options over with Dr. O'Reilly. "When I first got a diagnosis of prostate cancer, it took over my life for awhile," says Snook, now 68 years old. "I did research and found out most men with prostate cancer don't die of the disease."

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He and Dr. O'Reilly discussed the treatment options, including active surveillance, surgery and radiation. "We talked about the possible side effects of prostate cancer treatment, such as incontinence and erectile dysfunction. I decided that active surveillance was a good choice for me," Snook says. "Dr. O'Reilly assured me that if I changed my mind later on, we could change the treatment plan."

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In the first two years of active surveillance, Snook had several biopsies. In the past several years, he has had MRIs and blood tests to assess his prostate cancer. There has been no significant change.

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Snook believes that having a good relationship with your doctor is key to the success of active surveillance. "I have a lot of trust in Dr. O'Reilly. I know that if there were big changes in my prostate cancer, he would give me my options, and we would makes changes in my treatment plan," he says.

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"I feel very comfortable with active surveillance," Snook adds. "It allows you to live your life and in my case, enjoy my retirement. You're monitoring your prostate cancer, but it's not taking over your life. I think about it two to three times a year when I go in for an appointment, but I'm not overly concerned about it in between appointments."

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