Have you or a loved one been recently diagnosed with prostate cancer? You are not alone. This guide provides easy-to-understand information and support resources, so you can make the best possible decisions for you and your family as you face prostate cancer.
NEWLY DIAGNOSED PROSTATE CANCER GUIDE
NEWLY DIAGNOSED PROSTATE CANCER GUIDE
Newly diagnosed with prostate cancer? You are not alone.
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ZERO Prostate Cancer is the leading national nonprofit with the mission to end prostate cancer and help all who are impacted. ZERO advances research, provides support, and creates solutions to achieve health equity to meet the most critical needs of our community.
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Table of Contents
Page
Prostate Cancer Basics...................................................................4 Diagnosing Prostate Cancer...........................................................7 Prostate Cancer Imaging................................................................8 Understanding Your Diagnosis and Stage......................................9 Genetic Testing............................................................................12 Biomarker Testing........................................................................13 Prostate Cancer Progression and Treatment................................14 Prostate-Specific Membrane Antigen (PSMA) ..............................18 Clinical Trials.................................................................................19 Managing Treatment Side Effects . ...............................................20 Your Healthcare Team...................................................................21 Getting a Second Opinion............................................................23 Living with Prostate Cancer..........................................................25 Prostate Cancer Terms to Know...................................................27 Newly Diagnosed Worksheet.......................................................29 Questions for Your Doctor: Newly Diagnosed ..............................30 Questions for Your Doctor: Advanced Prostate Cancer . ..............31 ZERO Support Programs ..............................................................32 Prostate Cancer Family Tree.........................................................33 Notes Pages.................................................................................34
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Prostate Cancer Basics Now What?
Hearing the words “you have prostate cancer” can be scary and overwhelming. Once you recover from the shock of hearing those words, it’s important to arm yourself with information about prostate cancer diagnosis, treatment, side effect management, and survivorship. This guide provides easy-to-understand information on prostate cancer and a variety of support resources for you and your family, so you can make the best possible decisions. After reviewing this guide, please visit our website – zerocancer.org – for more in-depth information on prostate cancer treatment, imaging, side effects, and more. It’s important to know that you are not alone. More than 3.3 million American men are living with prostate cancer today. Diagnosis and treatment advances happen regularly and staying informed and connected will help you in this fight.
“Keep educating yourself and do research. If you don’t understand, ask questions. And find support, whether it’s from a support group, your church, your loved ones, or your friends. You don’t have to face prostate cancer alone.” Rob Alexander, prostate cancer survivor
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Prostate Cancer Facts and Stats Knowing how many men are affected by prostate cancer, as well as basic facts and figures, will help you better understand this disease, and may help you feel comfortable spreading awareness to those around you. One in eight American men will have prostate cancer during their lifetime. Prostate cancer is the second leading cause of cancer death among American men and is the most commonly diagnosed after skin cancers. The American Cancer Society estimates that 299,010 men will be diagnosed with prostate cancer and 35,250 will die from the disease this year.
The five-year survival rate for all prostate cancer diagnoses is 97%. More than 3.3 million Americans are living with prostate cancer.
Learn more prostate cancer facts at zerocancer.org/facts-statistics .
Prostate Cancer Risk Factors The most common risk factor for prostate cancer is age, but other risk factors include family history, African ancestry, and exposure to chemicals that are thought to, or known to, cause cancer. Learn more at zerocancer.org/risk-factors .
Family History Understanding your genetics and family history of cancer is important. A man with at least one close relative, such as a father, brother, or son, who has had prostate cancer has twice the risk of the disease as the general population. In addition, it is important to know about a family history of breast, ovarian, or pancreatic cancers. Some gene mutations found in those cancers have also been identified in prostate cancer and have been linked to more aggressive disease and increased lifetime risk of developing one or more cancers. Learn more about genetic testing on page 12 of this guide.
RISK FACTORS
FAMILY HISTORY
RACE
AGING
DIET
GENE CHANGES
CHEMICALS
Racial Disparities & Health Equity in Prostate Cancer Prostate cancer is the most commonly diagnosed cancer and the second leading cause of cancer death in Black/African American men in the United States. Not only are Black men more likely to get prostate cancer, but they are also more likely to be diagnosed with advanced disease than white men. In fact, Black men are 1.7 times more likely to be diagnosed with prostate cancer and 2.1 times more likely to die from the disease.
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Recent research suggests that these differences in health outcomes are likely caused by several factors within the U.S. healthcare system, including: access to care, insurance status, racial biases, and distrust in the medical system – it cannot be solely explained by genetic differences. ZERO is committed to bridging the gap between racial and health disparities in prostate cancer among Black men. Learn more at zerocancer.org/health-equity . Veterans and Prostate Cancer One in eight men will be diagnosed with prostate cancer in their lifetime. However, the prostate cancer incidence rate for Veterans is 1 in 5, making prostate cancer the most commonly diagnosed cancer among U.S. Veterans. Studies have shown Vietnam and Korean War Veterans with exposure to defoliants like Agent Orange have a higher occurrence of prostate cancer. ZERO is committed to bringing the Veteran community the education, resources, and tools needed to fight prostate cancer. Learn more at zerocancer.org/veterans .
Prostate Cancer Screening
Routine prostate cancer screening starts with a PSA blood test and may include a rectal exam. Both are quick and simple. Learn more at zerocancer.org/early-detection . PSA Test – The PSA test is a blood test that measures the amount of prostate-specific antigen (PSA) in your blood. PSA is a protein produced by normal cells in your prostate and also by prostate cancer cells. It is normal to have a small amount of PSA in your blood, and the amount rises as you get older. Digital Rectal Examination (DRE) – During a digital rectal examination, a doctor or nurse feels your prostate through the wall of the rectum to check for any lumps or hard areas and to get an idea of its size. The DRE only lasts a few seconds and your healthcare provider will wear a glove and use lubricant to reduce discomfort. DREs are also used to determine the T (Tumor) stage.
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Diagnosing Prostate Cancer After a PSA test or a digital rectal exam show abnormal results, further testing is needed to determine if prostate cancer is present. You may have already had some of these described below. Additional tests could help you find out if the cancer has spread or how aggressive the cancer is. Learn more at zerocancer.org/diagnosis . MRI – Magnetic resonance imaging (MRI) is a scan that provides more detailed images than an ultrasound. It can help determine if a biopsy is needed, guide needles for a biopsy, and help determine the stage of cancer. Prostate Biopsy – If the results of the PSA test and/or DRE indicate any abnormalities, the doctor will recommend a biopsy as the next step. A biopsy involves using a thin needle to take small pieces of tissue from the prostate. The tissue is then looked at under a microscope to check for cancer. Cancer can only be diagnosed with a biopsy. Biopsy results will determine your Gleason score. Different types of prostate biopsies are available, including transrectal, transperineal, and transurethral. Talk to your doctor about which one is right for you. If prostate cancer is confirmed by the biopsy, your doctor may want to test nearby lymph nodes for signs of cancer as well. Several other tests and procedures can be used to determine more about the location and/or severity of your cancer. Ultrasound – A scan that uses sound waves to look for suspicious areas in the prostate. It is often used to help guide a biopsy. “If your doctor suggests you may need a future biopsy based on PSA and/or DRE results, you should also ask your doctor whether or not you qualify for an MRI as an additional part of your screening process. This technology provides additional helpful information in many situations of what could be happening within specific areas of the prostate and near the prostate. It also estimates the size of the prostate with good accuracy, and the MRI has already helped many men and their doctors make more informed decisions.” Dr. Mark Moyad, University of Michigan Medical Center, Department of Urology, and Public Health Educator/Clinical Researcher
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Prostate Cancer Imaging A variety of imaging scans may be used to help your doctor biopsy, diagnose, and stage prostate cancer. Imaging scans can also help determine if and where the cancer has spread, help plan treatment, or determine if treatment is working.
IMAGING TYPE
ABOUT THE IMAGING SCAN
Ultrasound
• Used to look for suspicious areas in the prostate
• Shows prostate cancer that may have spread to bones • Requires other tests to confirm cancer in the bones • Used to determine if a biopsy is needed • Guides a needle for a biopsy • Can help determine the stage of prostate cancer • Detects prostate cancer in lymph nodes • After a recurrence, can help determine organ involvement • Shows images of prostate cancer that may have spread • Are often less detailed than MRI or CT images • Uses new and advanced imaging agents to detect cancer
Bone Scan
Conventional Imaging
MRI Scan
CT Scan
Advanced Imaging
PET/CT Scan
Advanced Imaging and New Imaging Agents All imaging tests have limitations. Some are better at detecting cancer in lymph nodes, some work best if the PSA levels are rising, and others may miss small areas of prostate cancer that have come back or spread. With the discovery of new imaging agents, these pictures of the inside of the body make it easier to see prostate cancer cells, even in small amounts, that have traveled outside the prostate to other places in the body. These advances are improving how a patient’s prognosis (forecasted outcome) is determined, how treatment decisions are made, and if the treatment is working. Learn more at zerocancer.org/diagnosis/imaging .
Be sure to talk to your doctor about which scans might be best for you. Here are some questions to get you started:
What are the differences between a CT scan, MRI scan, and PET/CT scan? Will I need more than one imaging scan? How long do these scans take and how do I prepare? How often will I need to have scans? What kind of imaging agent will be used? Should I be concerned about side effects from any of the imaging agents? Does my PSA level have to be rising to qualify for any of these imaging scans? What will the results tell me? CT =Computed Tomography; DRE =Digital Rectal Exam; MRI =Magnetic Resonance Imaging; PET =Positron Emission Tomography; PSA =Prostate-Specific Antigen
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Understanding Your Diagnosis and Stage Stages The stage of the prostate cancer tells you if, and how far, the prostate cancer has spread beyond the prostate. There are different ways to describe the prostate cancer stage, shown in the table below. Information used to determine your stage of cancer may include results from your DRE, biopsy (Gleason score), PSA, and imaging scans. Together, these results should help you and your doctor decide which treatments might be suitable for you. Learn more at zerocancer.org/stages-and-grading .
PROSTATE CANCER STAGES
Localized or Early Stage I
The cancer is small and only in the prostate.
The cancer is larger and may be in both lobes of the prostate, but is still confined to the prostate.
Localized or Early Stage II
Locally Advanced or Regional
The cancer has spread beyond the prostate to nearby lymph glands or seminal vesicles.
Stage III
The cancer has spread to other parts of the body, such as to the bones, liver, or lungs. This is referred to as metastatic or advanced prostate cancer. If prostate cancer spreads, or metastasizes, to the bone, you have prostate cancer cells in the bone, not bone cancer.
Advanced or Metastatic
Stage IV
Gleason’s Pattern Scale
Gleason Score The Gleason score indicates what the prostate cancer cells look like under a microscope. The Gleason score is determined by assigning a grade to the most common type of cells in the biopsy, and a second grade to the second most common type of cells in the biopsy. Those grades are then added together for the score. For example, 3 + 4 = 7. The five historical Gleason grades of prostate cancer (Humpath.com – Human pathology, Paris, France).
Well differentiated
1
1. Small, uniform glands.
2. More space (stroma) between glands.
2
Moderately differentiated
3. Distinctly infiltrations of cells from glands at margins. 4. Irregular masses of neoplastic cells with few glands. 5. Lack of or occasional glands, sheets of cells.
3
Poorly differentiated Anaplastic
4
5
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Grade Group The Gleason score can be misleading for some prostate cancer patients. The Grade Groups may replace the Gleason score over time but, for now, you might see one or both on a pathology report.
RISK GROUP GRADE GROUP GLEASON SCORE
DESCRIPTION
Gleason X
Gleason score cannot be determined
The tumor tissue is well differentiated, less aggressive and likely to grow more slowly The tumor tissue is moderately differentiated, moderately aggressive and likely to grow but may not spread quickly The tumor tissue is poorly differentiated or undifferentiated, highly aggressive and likely to grow faster and spread
Low/Very Low Grade Group 1 Gleason 6 (or less)
Intermediate (Favorable or Unfavorable)
Grade Group 2 Grade Group 3
Gleason 3 + 4 = 7 Gleason 4 + 3 = 7
Grade Group 4 Grade Group 5
Gleason 8 Gleason 9–10
High/Very High
Tumor Categories The standardized Tumor, Node, and Metastasis (TNM) system is used to stage prostate cancer. The T category is based on the extent of the tumor itself. The N category is based on whether the cancer has spread to nearby lymph nodes. The M category is based on whether the cancer has spread beyond nearby lymph nodes. T1: The tumor cannot be felt with a DRE or seen with imaging. T1a: T he tumor is found accidentally during a surgery for benign prostatic hyperplasia or another prostate condition. The tumor takes up less than 5% of the removed tissue. T1b: T he tumor is found accidentally during a surgery, and the tumor takes up more than 5% of the removed tissue. T1c: The tumor is diagnosed with a needle biopsy, usually because of an elevated PSA. T2: The tumor is confined to the prostate and can be either felt with a DRE or seen with imaging. T2a : The tumor is confined to half of one lobe of the prostate. T2b: The tumor is present in more than half of one lobe, but is not in both lobes. T2c: The tumor is present in both lobes of the prostate. T3: The tumor has grown outside of the prostate and may be present in the seminal vesicles. T3a: The tumor is outside of the prostate, but is not in the seminal vesicles. T3b: The tumor is outside of the prostate and has spread to the seminal vesicles. T4: The tumor has grown into tissues beyond the seminal vesicles. For more on TNM staging, please visit zerocancer.org/stages-and-grading .
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Risk Group For those patients with localized (stages I-II) or locally advanced prostate cancer (stage III), the cancer can be further divided into risk groups. Knowing your risk group is important for understanding your prognosis, including how aggressive your prostate cancer might be. Low-risk prostate cancer must have all of the following features to be classified as low risk: cT1-cT2a Grade Group 1 PSA less than 10 ng/mL Intermediate-risk prostate cancer has one or more of the following features: cT2b-cT2c Grade Group 2 or 3 PSA 10-20 ng/mL Intermediate-risk prostate cancer can be further subdivided into favorable and unfavorable: Favorable intermediate risk has one of the above features with a Grade Group of 1 or 2 and less than 50% of biopsy cores positive Unfavorable intermediate risk has 2-3 of the above features with Grade Group 3 or greater than or equal to 50% biopsy cores positive
High-risk prostate cancer has any of the following features: cT3a Grade Group 4 or 5 PSA greater than 20 ng/mL
Talk to your doctor about your risk group, and how it might affect your treatment options.
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Genetic Testing Genetic testing identifies gene mutations that can impact patients and their families. Two different types of genetic tests in prostate cancer are germline and somatic. These are clinical tests that are used by doctors to learn more about a patient’s prostate cancer and to help develop treatment plans. Understanding the differences between these tests is important to decide which one may be right for you.
GENETIC OR GERMLINE TESTING BIOMARKER OR SOMATIC TESTING
Inherited, or hereditary, mutations
Acquired mutations
Inherited - passed from parent to child
Not passed from parent to child
Inherited gene mutations exist in every cell of the body 10% of prostate cancer is thought to be caused by inherited, germline mutations
Acquired gene mutations exist only in the tumor itself 90% of prostate cancer is thought to be due to non-inherited, acquired mutations
Provides eligibility for targeted cancer therapies Provides eligibility for targeted cancer therapies
May provide information on family member’s risk of developing certain cancers
Does not provide information on cancer risk in other family members Identified by testing the tumor itself or tumor cells that are circulating in the blood
Identified through a blood or saliva sample
Approximately 10% of prostate cancers are thought to be caused by an inherited gene mutation. Inherited genetic mutations can be found in the BRCA1, BRCA2, and HOBX13 genes, among others. Genetic or germline testing is done with a simple blood or saliva test. A genetic counselor can help you better understand the pros and cons of genetic testing. It is important to know that, while prostate cancer can run in some families, most prostate cancers occur in men without a family history of it. Targeted therapies are available for men with a genetic mutation and metastatic castrate-resistant prostate cancer (mHRPC). Genetic testing also provides family members with valuable information regarding their cancer risks. Family members of men with hereditary cancer have a 50% chance of having the same genetic mutation. Genetic testing can help family members know if they should also be tested or take measures to reduce their risk of developing cancer. All men with prostate cancer should consider genetic testing.
Learn more at zerocancer.org/genetic-testing .
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Biomarker Testing Biomarker Testing and Precision Medicine
Biomarker testing and precision medicine are somewhat newer terms in the cancer space. Biomarker testing looks for genes, proteins, and tumor markers that tell us more about your specific cancer. Biomarkers can help doctors diagnose cancer and monitor cancer, and can also affect how some treatments will work for you. What is Biomarker Testing in Prostate Cancer? Biomarker or somatic testing is done on cancerous tissue taken from the prostate to provide information about how your prostate cancer might behave. Biomarker testing may also be called somatic testing, tumor testing, or genomic testing. It can be performed on both biopsy tissue and on tissue from an entire prostate following a prostatectomy. These tests look for mutations in genes that are relevant in cancer and that may drive cancer growth. Some of these biomarkers tell your doctors how aggressive your prostate cancer might be. Biomarker testing may help you and your doctor better understand your particular cancer and choose the best treatment option for you.
There are many different tumor biomarker tests available. Talk to your doctor about testing and which biomarker test might be right for you.
Learn more at zerocancer.org/biomarker-testing .
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Prostate Cancer Progression and Treatment Prostate cancer can be diagnosed at various stages, depending on when the prostate cancer is detected and how far the disease has progressed. Many patients respond immediately to treatment and don’t require any further treatment. Others may already have metastatic disease by the time the cancer is first diagnosed or later develop metastatic disease after treatment completion for early-stage disease. Treatment to lower testosterone is a mainstay of therapy for patients with metastatic disease. When prostate cancer becomes resistant to this type of therapy it is called hormone or castrate resistant. The definitions and ways prostate cancer can progress may be confusing, but here is a chart to help you:
Prostate Cancer and Treatment Progression
Targeted Therapy, Chemotherapy, Immunotherapy
Radiation, Surgery
Novel Antiandrogens, Chemotherapy
Hormone Therapy
Clinical Trials
Non-Metastatic Prostate Cancer
Metastatic Prostate Cancer
Hormone-Sensitive Prostate Cancer (HSPC)
Hormone-Resistant Prostate Cancer (HRPC)
Hormone-Sensitive Prostate Cancer (HSPC, also called Castration-Sensitive Prostate Cancer or CSPC) This is a form of prostate cancer that still responds to testosterone suppression therapy. HSPC can be referred to as non-metastatic, or nmHSPC, when there is no detectable metastases - spread of cancer - upon imaging. It can be referred to as mHSPC when it has advanced to metastatic stage. Hormone-Resistant Prostate Cancer (HRPC, also called Castration-Resistant Prostate Cancer or CRPC) This is a form of prostate cancer that keeps growing even when the amount of testosterone in the body is reduced to very low levels. HRPC can be referred to as non-metastatic, or nmHRPC, when there is no detectable metastases upon imaging, and as mHRPC when it has advanced to metastatic stage. Before deciding on a treatment with your doctor, learning about all treatment options, as well as clinical trials, is important. Treatment decisions should be based on many factors, including your age, overall health, family history, stage at diagnosis, aggressiveness of the disease, and results of genetic testing, among others. In addition, understanding possible side effects of each treatment, how side effects can be managed, weighing quality of life issues, and deciding what is most important to you and your family should all be considered. Learn more at zerocancer.org/treatment-options .
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Types of Prostate Cancer Treatment Active Surveillance
Active surveillance is a disease management strategy for low-risk, early stage prostate cancer. This strategy monitors the disease for signs of progression (with regular PSA testing and DREs) but avoids immediate treatment with surgery or radiation. If test results change, treatment may be warranted. Local Therapies Local therapy is treatment that is directed to a specific organ or limited area of the body, such as the prostate. Local therapies for prostate cancer include surgery, radiation, HIFU, and cryotherapy. Surgery Surgically removing all or part of the prostate, also known as a prostatectomy, aims to remove all of the prostate cancer. The full removal of the prostate is called a radical prostatectomy. Robotic-assisted surgical removal of the prostate is the most widely used form of localized prostate cancer surgery. Like other surgical methods, this procedure still requires an experienced surgeon, but robotic surgery may lead to a faster recovery time, reduced blood loss, and a lower risk of infection. Whichever type of surgery is performed, it usually requires an overnight hospital stay and patients typically will need a catheter to help drain urine for up to 14 days post-surgery. Many physical activities will be limited for up to two months after the surgery. Radiation Therapy Radiation therapy, or radiotherapy, uses various forms of radiation to safely and effectively treat prostate cancer. It works by damaging the genetic material within the prostate cancer cells and limiting their ability to successfully reproduce. When these damaged cancer cells die, the body naturally eliminates them. The goal of radiation is to kill the tumor while sparing as much healthy tissue as possible. Radiation therapy can be given externally (directed from outside the body) or internally (placed inside the body) when treating localized prostate cancer. These two categories are further broken into several types of treatment that vary by method, dose, frequency, and intended use. External beam radiation therapy (EBRT) is non-invasive, so patients can be active during and after treatment with no down time. Brachytherapy, while less common, is a type of internal radiation therapy that involves the placement of radioactive seeds or temporary catheters into the prostate. This is a minimally invasive procedure, and most patients can expect to return to normal activity in less than a week. In patients with advanced prostate cancer, EBRT can be used to relieve pain from bone metastases and may also be used in combination with hormone therapy.
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High Intensity Focused Ultrasound (HIFU) HIFU is an FDA-approved, minimally invasive procedure for the ablation (destruction) of prostate tissue. It destroys prostate cancer cells through precise and focused ultrasound energy, or sound waves. Ultrasound may be a treatment option for patients whose prostate cancer is considered low- to intermediate-risk and is confined to the prostate. Cryotherapy Cryotherapy, also called cryoablation or cryosurgery, freezes prostate tissue, causing cancer cells to die. This type of treatment is sometimes used as an alternative to surgical removal of the prostate or if the cancer has come back after radiation therapy. Cryotherapy is an option for those with localized or locally advanced prostate cancer. Systemic Therapies Systemic therapies refers to any type of treatment that targets or travels through the entire body. These include chemotherapy, hormone therapy, immunotherapy, targeted therapy, and radiopharmaceuticals. Hormone Therapy Hormone therapy is also called androgen deprivation therapy (ADT), hormone deprivation therapy, or hormone suppression therapy. Prostate cancer is fueled by male hormones called androgens. The primary male androgen is testosterone. Hormone therapy stops or slows the body’s ability to make testosterone, aiming to stop tumor growth and/or shrink the tumor. Several types of hormone therapy exist, but it is important to know that hormone therapy alone does not cure prostate cancer. Hormone therapy is especially important for those with advanced disease, whose cancer has returned (recurrence) after surgery or radiation, or whose cancer is considered high-risk for metastasis (spread). It can also be used in combination with other treatments or to shrink a tumor to make other treatments more effective.
The main types of hormone therapies are:
LHRH Agonists – Luteinizing hormone-releasing hormone (LHRH) is a key hormone released into the body before the body produces testosterone. LHRH agonists block the release of LHRH, causing testosterone levels to drop gradually, usually over a month’s time. LHRH Antagonists – These block the pituitary gland from making hormones, causing the testicles to stop making testosterone, resulting in an immediate drop in testosterone levels. Anti-Androgens – These keep testosterone from binding to androgen receptors, which may keep prostate cancer cells from growing. Inhibitors and Blockers – These inhibit the synthesis of the androgen and block androgen receptors to slow the production of testosterone. Orchiectomy – This is surgery to remove one or both testicles, thereby drastically reducing the body’s ability to produce testosterone.
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An exciting advancement in hormone therapy is a recently approved oral ADT option. While many forms of ADT are given by injection, oral ADT may provide patients with more flexibility in scheduling appointments and perhaps even reduced side effects. Ask your doctor which option is best for you. Chemotherapy Chemotherapy is a type of prostate cancer treatment that is used to kill cancer cells throughout the body. They are given intravenously (through the veins) or orally (as a pill), depending on the drug. Because chemotherapy also attacks other cells in the body, this treatment can cause significant side effects. Chemotherapy may be used when a patient’s prostate cancer has metastasized (spread) and is often given in combination with ADT or after hormone therapy stops working. Immunotherapy Immunotherapy, also called biologic therapy, treats the whole body by attempting to activate a person’s immune system so that it will recognize and destroy prostate cancer cells. It uses materials either made by the body or in a lab to improve, target, or restore immune function. Different types of immunotherapies include vaccines, monoclonal antibodies, and non-specific immunotherapy. Radiopharmaceuticals Radiopharmaceuticals are medications that deliver radiation, typically given through a vein to men with metastatic prostate cancer that has spread widely to the bone. Targeted Therapy Targeted therapy uses drugs that are designed to find and attack cancer cells. The goal is to interfere with the specific molecules that drive the growth of the tumor. A targeted therapy approach is a form of personalized cancer treatment, also known as precision medicine, and is often associated with fewer side effects than other treatments. Targeted therapies may be used by themselves or in combination with other therapies. PARP Inhibitors – A type of targeted therapy that affects how DNA is repaired in cancer cells. They target certain gene mutations (such as BRCA1 and BRCA2) and therefore are only used in patients who are known to have these mutations found through genetic testing. Several oral PARP inhibitor medications are approved by the FDA for treatment of certain types of advanced prostate cancer. Previously, PARP inhibitors were approved to treat certain breast, ovarian, and pancreatic cancers.
PSMA Targeted Therapies – The FDA has approved treatments for PSMA-positive prostate cancer. Learn more about PSMA and PSMA targeted therapies in the next section of this guide.
Clinical Trials A clinical trial is a research study investigating experimental treatment to see if it is safe to use and effective in fighting a disease. Learn more about clinical trials later in this guide.
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Prostate-Specific Membrane Antigen (PSMA) PSMA is a protein found on the surface of normal prostate cells, but it is found in higher amounts on prostate cancer cells. It is present in more than 80% of prostate cancer cells in men with prostate cancer. PSMA has been the subject of extensive and promising research over the last several decades. It is now used as a target for imaging to diagnose metastatic or recurrent prostate cancer, and it is also being explored as a target for medications that can treat prostate cancer. This dual purpose is why some refer to PSMA as a “theranostic” - a combination of the terms “therapeutics” and “diagnostics”. How is PSMA Targeted for Detecting Prostate Cancer? A PSMA PET (positron emission tomography) scan is an imaging procedure used to help detect prostate cancer cells within the body. For this procedure, a radioactive agent is injected into the bloodstream prior to the PET scan. The agent then attaches to the PSMA protein on the prostate cancer cells. Once there, it glows in the PET images that are taken to indicate where prostate cancer cells that have traveled outside the prostate may be. This procedure allows prostate cancer cells to be found that may not have been picked up on traditional scans like CT scans and bone scans. Multiple PSMA PET imaging agents are now approved by the FDA for use in patients whose prostate cancer has recurred or spread. How is PSMA Targeted for Treating Prostate Cancer? Targeting PSMA proteins on a prostate cancer cell enables treatments to be focused on the cancer cell itself, rather than on normal healthy cells in the body, allowing a precision medicine approach to treatment. PSMA targeted therapies will likely be made available to patients who have PSMA protein detected on their cancer cells using a PSMA PET scan. The FDA has approved a drug for the treatment of PSMA-positive mHRPC, and other forms of treatment that target PSMA are being developed.
Questions For Your Doctor
Is the PSMA PET scan right for me? Do you offer PSMA PET scans? Are they covered by my health insurance?
Is exposure to the radioactive agent in a PSMA PET safe? Is PSMA targeted therapy a treatment option for me? What are the side effects of PSMA targeted therapy?
Learn more at zerocancer.org/targeted-therapy .
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Clinical Trials After consulting with your doctor, you may consider enrolling in a clinical trial to gain access to potential new treatments or techniques that are still in the investigational stage. A clinical trial is a research study investigating experimental treatment to see if it is safe to use and effective in fighting a disease. All treatments used today for prostate cancer are available because of past clinical trials and thanks to past clinical trial participants. Many times people do not participate in a clinical trial because they did not know they were eligible or that one was available, so be sure to ask your doctor when making your treatment decisions. Participating in a clinical trial is a way to gain access to promising new drugs that are yet to be approved by the FDA. Hundreds of research projects are currently ongoing and investigating the potential of new drugs and new combinations of drugs. Historically, people of color are underrepresented in clinical trials. Diversity in clinical trial participation is critical to understanding the safety and efficacy of treatment options. When clinical trials lack diversity and participants are of the same age, race, and ethnicity, data from that clinical trial will fail to help researchers learn how different people may respond differently to the same medication.
CLINICAL TRIALS BY THE NUMBERS
10–15 the average number of years for a drug to be developed and get on the market for patients
6–7 the average number of years drugs are studied in clinical trials
80% of clinical trials fail because they don’t recruit enough patients
35 + number of drugs approved by the FDA for prostate cancer
Additional information about clinical trials, as well as a free clinical trial matching service, can be found at zerocancer.org/clinicaltrials.
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Managing Treatment Side Effects There are many side effects of prostate cancer treatment. Just as prostate cancer varies from patient to patient, so will the side effects experienced. Your healthcare team will work hard to ensure you experience minimal side effects as a result of treatment. Side effects related to prostate cancer treatments vary by the type of treatment you receive. Some common side effects of treatment are urinary incontinence (the inability to control your bladder) and erectile dysfunction (the inability to achieve a full erection). Other side effects can include fatigue, depression, and infertility. It is important to talk to your doctor and your partner about all potential side effects before choosing treatment, as these potential changes can impact your self-esteem and personal relationships. Once you determine your treatment, work with your doctor on a plan to manage any side effects you experience. Learn more at zerocancer.org/side-effects .
POSSIBLE SIDE EFFECTS
TREATMENT
WHAT IT DOES
Removes the cancerous tissues and the prostate
Urinary incontinence, erectile dysfunction (ED), and infertility
Surgery
ED, hot flashes, mood changes, loss of libido, depression, cardiovascular events, and bone loss ED, increased urinary urgency and frequency, diarrhea, rectal bleeding, and discomfort during urination and bowel movement Fever, chills, fatigue, and joint or body ache
Minimizes presence of androgens which fuel prostate cancer growth
Hormone Therapy
Slows prostate cancer cell growth by targeting cells externally or by injection
Radiation
Changes the body’s immune system to kill cancer cells
Immunotherapy
Targets a particular protein or genetic mutation in the tumor
Nausea, fatigue, anemia, vomiting, diarrhea, decreased appetite, headache
Targeted Therapy
Inhibits bone loss and fractures and relieves pain from prostate cancer in the bone Targets cancer cells that grow quickly including cancer cells metastasized to the bone
Low grade fever, tingling around mouth or hand cramps from low calcium, dental pains Hair loss, fragile bones, nausea, and nervous system disorders like confusion, depression, or headaches
Bone-Related Treatments
Chemotherapy
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Your Healthcare Team To receive the best care possible, seek care from a multidisciplinary team. A multidisciplinary team is a group of healthcare professionals from different specialties who work together to suggest a treatment plan for you based on your diagnosis, personal health, and preferences. This approach helps ensure you have the best health outcome and highest quality of life. Keep in mind that you have a choice in who manages your care. This is about finding the right treatment team to work with to make the right decisions for you and with you. Learn more at zerocancer.org/healthcare-team .
A multidisciplinary team may include:
Urologist A urologist is a physician specializing in diseases of the male reproductive organs and male and female urinary tract. Some urologists have oncology training. Many urologists are also involved in certain aspects of other forms of therapy including radiation therapy, hormone therapy, treatment of advanced disease, clinical trials, and active surveillance. All urologists are surgeons as well, and many perform prostate cancer surgery. Radiation Oncologist A radiation oncologist is a highly trained physician specializing in the treatment of prostate cancer using the various types of radiation approved to treat the disease. Medical Oncologist A medical oncologist is a physician who specializes in the non-surgical treatment of cancer with medicines such as chemotherapy, hormonal therapy, immunotherapy, and other drugs. Primary Care Physician A primary care physician (PCP) is often an internist or family medicine physician who treats common illnesses and oversees general care. Oncology Social Worker Oncology social workers are trained to work with cancer patients and their families. It is important to understand your emotional well-being and get the support you need mentally, as well as physically. An oncology social worker provides individual counseling, access to support groups, and referrals to related services for men with prostate cancer.
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Physical Therapist A physical therapist can help deal with the physical changes caused by cancer treatment. Before and after surgery or radiation therapy, working with a physical therapist to strengthen the pelvic floor can help to manage or prevent side effects such as urinary incontinence. Nutritionist A nutritionist provides information and guidance about good nutrition. This can help a patient combat cancer-related or treatment-related weight loss or gain by recommending foods that provide adequate calories, vitamins, and protein. In addition, a nutritionist provides helpful tips and recipes customized to fit your specific dietary needs. Nurse, Patient, or Financial Navigator A navigator is an expert in understanding the details of cancer treatment and will support, inform, guide, and answer questions for you through all stages of treatment and beyond. As advocates for patients and their families, they provide support and enhance the quality of care you receive. If a patient navigator is not made available to you, ZERO can help with our ZERO360 patient support program. Visit zerocancer.org/zero360 for more information. Genetic Counselor A genetic counselor is a healthcare professional who will collect your personal and family health history and use this information to help determine the likelihood of having a genetic condition. The genetic counselor can help you decide whether or not genetic testing might be right for you or your family members, and can help explain genetic testing results. Sexual Health Professional A sexual health professional specializes in helping patients and their partners manage erectile dysfunction, low testosterone, hormone therapy, and incontinence related to prostate cancer treatment and side effects. Mental Health Professional A prostate cancer diagnosis can be overwhelming. Consider whether or not speaking with a mental health professional might be helpful to you.
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Getting a Second Opinion Seeking a second opinion following a prostate cancer diagnosis is very common and doing so can make you feel more confident in the treatment decision that you make. It’s OK to get a second opinion at any point during your care. Why Get a Second Opinion? To understand all available treatment options and have peace of mind with your treatment decision To get the opinion of another prostate cancer expert To confirm a diagnosis or treatment plan To hear information about your cancer explained in a different way To share the opinion of more than one healthcare expert with your insurance company How to Ask About a Second Opinion Some people find it hard to tell their doctors that they’d like a second opinion. Your doctor shouldn’t discourage you from getting a second opinion. If you are unsure of how to begin, here are a few ways to start the conversation: “I’m thinking of getting a second opinion. Can you recommend someone?” “Before we start treatment, I’d like to get a second opinion. Will you help me with that?” “If you had my type of cancer, who would you see for a second opinion?” “I think that I’d like to talk with another doctor to be sure I have all my bases covered.” The Process Before you start looking for a second opinion, contact your insurance company to find out what your policy covers. In some cases, you may have to get a second opinion from another doctor who is part of your health plan before the plan will pay for your treatment. It’s important to be able to give the new doctor the exact details of your diagnosis and proposed treatment.
Make sure you have the following information handy and always keep copies for yourself:
A copy of your pathology report from any biopsy or surgery If you had surgery, a copy of your operative report If you were in the hospital, a copy of your discharge summary
A summary of your doctor’s current treatment plan or the plan that has been given to you as an option Since some drugs can have long-term side effects, a list of all your drugs, drug doses, and when you take/took them
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You can ask your current doctor’s office for copies of your records. If you have had treatment or tests in a hospital or clinic, you may need to contact their medical records department to find out how to get these records. Sometimes you can request your records through an online patient portal if your doctor’s office, treatment center, or hospital has one. Making Sense of the Second Opinion If the second opinion differs from the first, you may find the following tips helpful:
Talk to the second doctor about the opinion of the first Make an appointment with your first doctor to talk about the second opinion Ask both doctors to explain how they arrived at their treatment plan Ask what research studies or professional guidelines they consulted Ask if it is possible for the two doctors to review your case together
Do your own research on the latest treatment guidelines. Two good sources are the National Comprehensive Cancer Network (NCCN) Treatment Guidelines ( nccn.org ) and the National Cancer Institute’s (NCI) PDQ® Cancer Treatment Summaries ( cancer.gov ). Both are available in versions for health professionals (which use medical language and terminology) and patients (which use everyday language).
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Living with Prostate Cancer Monitoring for Recurrence
Completing your prostate cancer treatment can bring relief. When caught early, your initial treatment may mean you are considered free of disease. Most men will live cancer-free for years, and some even for the rest of their lives. But you may also feel worried or fearful that your cancer may return. Up to 40% of men will experience a recurrence, so it is important to understand your risk. Cancer recurrence is the return of cancer after a period when no cancer cells could be detected in the body. Your doctor will recommend how often and when your PSA screening should be scheduled to continue monitoring your health. When PSA levels in the blood rise after prostate cancer treatment, this is known as biochemical recurrence. This can occur even if the patient has no symptoms. If this happens, the doctor will order additional tests and make recommendations for how to manage your disease. Survivorship
SURVIVORSHIP CARE PLAN • Every cancer survivor should have one after primary treatment. • Is a comprehensive care summary. • Should include a record of treatments and follow-up plan. • Is a roadmap to life after prostate cancer treatment.
Survivorship focuses on the overall health and well- being of cancer patients. This includes monitoring for recurrence and providing follow-up care for the long-term physical and emotional side effects. This may include monitoring for secondary cancers and interventions to improve quality of life. Ask your healthcare team if they have a survivorship care plan for you. Learn more at zerocancer.org/survivorship . Nutrition and Exercise
For many, the diagnosis and treatment of cancer leads people to improve their diet and exercise behaviors. Maintaining a healthy diet and exercise regimen can help you prepare for and recover after cancer treatment. It may also help to prevent prostate cancer from coming back. Some treatment such as ADT can result in weight gain and bone loss. Depression and fatigue, which are common lingering effects of prostate cancer, can make it hard for even the most motivated person to exercise or eat healthy foods. Take small steps to take care of yourself and make a conscious choice to live a healthier life. Nutrition to Fight Prostate Cancer Although there is no diet to prevent or cure prostate cancer, you can make healthy choices that will help you fight your disease. Watching your weight may reduce your risk of dying from prostate cancer.
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