Veterans Prostate Cancer Guide

Created by Veterans, for Veterans. Learn more about prostate cancer diagnoses, treatment, and navigating the VA Health System with ZERO's Prostate Cancer Guide for Veterans.

VETERANS PROSTATE CANCER GUIDE

FORWARD

A prostate cancer diagnosis is one of the most compelling and emotional challenges a man can face in his lifetime. He is immediately confronted with an avalanche of questions about the severity of the cancer, his treatment options, the cost of those treatment options and their side effects. He has concerns about how the prostate cancer diagnosis will affect all aspects of his health and his relationships with his loved ones. This pamphlet is written for Veterans of the U.S. Armed Forces and their families. The information attempts to provide some beginning answers to those questions broadly. However, each prostate cancer survivor knows that sharing information about our personal experiences with newly diagnosed men is the best option for continuing care and quality of life.

TOM HUBERTY Petty Officer Third Class U.S. Navy Prostate Cancer Survivor

VETERANS PROSTATE CANCER GUIDE

TABLE OF CONTENTS WHAT IS PROSTATE CANCER? ...................................................................... 4 WHO IS AT RISK? ............................................................................................ 5 WHY ARE VETERANS AT HIGHER RISK? ...................................................... 6 WILL THE VA HELP ME WITH MY TREATMENT? ......................................... 7 BENEFITS OF EARLY DETECTION ................................................................. 9 GUIDELINES FOR EARLY DETECTION .......................................................... 9 DIAGNOSING PROSTATE CANCER ............................................................. 11 GENETIC & BIOMARKER TESTING ............................................................. 11 GRADING AND STAGING ............................................................................ 12 TREATMENT .................................................................................................. 13 TREATMENT OPTIONS . ............................................................................... 15 CLINICAL TRIALS .......................................................................................... 17 MANAGING SIDE EFFECTS ......................................................................... 18 QUESTIONS TO ASK YOUR DOCTOR ........................................................ 19 HEALTHY LIVING .......................................................................................... 20 RESOURCES .................................................................................................. 22

VETERANS PROSTATE CANCER GUIDE

PROSTATE CANCER 101 WHAT IS PROSTATE CANCER?

Prostate cancer is cancer that begins in the prostate. The prostate is a walnut- shaped gland in the male reproductive system located below the bladder and in front of the rectum. It surrounds the urethra and makes the fluid to nourish and protect sperm cells. Cancer is defined as the uncontrolled growth of cells into tumors. Tumors can be benign (not cancerous), or malignant (cancerous). Most prostate cancer grows slowly and stays in the prostate. However, some can be aggressive and can spread quickly.

VETERANS PROSTATE CANCER GUIDE

WHO IS AT RISK? Every 15 minutes, an American man dies from prostate cancer. That is more than 96 deaths per day. A man’s risk of prostate cancer increases with age, and most prostate cancer is found in men over the age of 50. The greatest risk factors are family history, African ancestry, and increasing age. Active-duty military personnel are twice as likely to be diagnosed with prostate cancer. *

RISK FACTORS

FAMILY HISTORY AGING DIET RACE GENE CHANGES CHEMICAL EXPOSURE

Are you Black/African American? Are you a Veteran? Did your father or brother have prostate cancer? Are you over the age of 50? Do you consume a high-fat diet? TAKE THE RISK QUIZ

*Sources: American Cancer Society. Cancer Facts & Figures 2024. Atlanta: American Cancer Society; 2024. Zhu K, Devesa SS, Wu H, et al. Cancer incidence in the U.S. Military population: comparison with rates from the SEER program. Cancer Epidemiol Biomarkers Prev. 2009;18(6):1740-1745. Society

VETERANS PROSTATE CANCER GUIDE

WHY ARE VETERANS AT HIGHER RISK? Those exposed to toxic chemicals and herbicides while in the military are at a higher risk for developing prostate cancer. Exposures such as Agent Orange, burn

pits, and PFAS and PFOA chemicals have all been shown to increase the risk of cancer, including prostate cancer. There may be other

service-connected factors that increase the risk of prostate cancer, including factors affecting those who serve in military aviation. However, these factors are not yet well understood. It is because of this higher risk of prostate cancer that every Veteran needs to be aware of the risks and treatment options, whether it be through the Veterans Health Administration, the Community Care Network, or a separate treatment facility.

16,000 of these patients have metastatic prostate cancer. Prostate cancer is the most common cancer diagnosis among U.S. Veterans. Prostate cancer rates in the military are double those of the general population. Nearly 489,000 prostate cancer patients are in the VA healthcare system. Learn more at zerocancer.org/veterans VETERANS AND PROSTATE CANCER BYTHE NUMBERS

VETERANS PROSTATE CANCER GUIDE

WILL THE VA HELP ME WITH MY TREATMENT? If you qualify for benefits with the U.S. Department of Veterans Affairs (VA), you have a couple of options available to you when it comes to your prostate cancer journey — the Veterans Health Administration and the Community Care Network. The Veterans Health Administration (VHA) Many Veterans are eligible to receive healthcare through the VA. If you are eligible, you can file for VA benefits and/or disability through the VA directly, through your state Veterans Affairs offices, or through a Veteran Service Organization (VSO). VSOs such as the American Legion, VFW, and Disabled American Veterans (DAV) have trained Veteran Service Officers that can assist you with the process. If you have Medicare or private insurance, you can use VA healthcare benefits alongside those plans. To learn more about the VHA, visit www.va.gov or call 1-877-222-8387. The VHA also runs a number of Precision Oncology Centers of Excellence that specialize in the treatment of advanced prostate cancer. At these Centers of Excellence, VA physicians perform state-of-the-art research and treatment.

VA Precision Oncology Centers of Excellence

Seattle, WA Portland, OR

Boston, MA Bronx, NY

Ann Arbor, MI

Chicago, IL

San Francisco, CA

15 Philadelphia, PA Washington, DC Baltimore, MD 16 17

Manhattan, NY

Kansas City, MO

6 7

Denver, CO

St. Louis, MO

Los Angeles, CA

Durham, NC

Charleston, SC

Atlanta, GA

Orlando, FL

Houston, TX

Tampa, FL

Funded Prostate Cancer Foundation (PCF) — VA Centers of Excellence

Genitourinary Centers of Excellence

VETERANS PROSTATE CANCER GUIDE

The Community Care Network (CCN) With the passage of the Mission Act in 2018, the Community Care Network was established to give Veterans a broader network of medical care outside of the VA. Through the CCN, Veterans can receive care through community providers when the VA cannot provide the care needed. For prostate cancer patients, this means expanded access to treatment and medical care that may be closer to home and easier to access. For more information on the Community Care Network and how eligibility works, please visit our CCN fact page at zerocancer.org/CCN. Do I have to get my prostate cancer treatment through the VA? Where to receive treatment and how to pay for it is an individualized decision. Some Veterans receive prostate cancer care through the VHA, while others utilize VA benefits through the CCN. Veterans may have access to private health insurance, Medicare, or Medicaid. For assistance navigating insurance benefits, Veterans can contact ZERO360 by calling 1-844-244-1309 toll-free. Am I Eligible to Receive VA Disability Compensation Because of My Diagnosis? If you have a service-connected condition, as determined by a Department of Veterans Affairs (VA) decision, you may be eligible for VA disability benefits. The VA defines a service-connected condition as an illness or injury that was caused by or made worse by your military service. To qualify for VA benefits for prostate cancer, a Veteran must have a diagnosis from a VA or qualified private medical provider. The VA then assesses whether the cancer is linked to military service, with certain exposures like Agent Orange or burn pits in Iraq or Afghanistan leading to a Presumptive Condition classification, indicating the VA presumes the condition resulted from service. To learn more about VA Benefits for prostate cancer, please visit zerocancer.org/veteranbenefits .

VETERANS PROSTATE CANCER GUIDE

BENEFITS OF EARLY DETECTION All men are at risk of prostate cancer. Finding the disease early means the best chance of curing it. When found early, 99% of men will be alive five years later. Prostate cancer generally shows no symptoms until it is at an advanced stage. The earlier prostate cancer is detected, the more treatment options are available. The only way to detect it early is with a Prostate-Specific Antigen (PSA) blood test, and a rectal exam may also be recommended – both are quick and simple. • PSA Test – Determines the level of PSA in the blood. Levels of PSA can be higher in men with prostate cancer. • Digital Rectal Exam (DRE) – A test done when a physician inserts a finger into the rectum to determine the health profile of the prostate.

GUIDELINES FOR EARLY DETECTION The National Comprehensive Cancer Network ® (NCCN ® ) and ZERO recommend a man should be educated about prostate cancer and understand his options for early detection. Talk with your doctor about your personal risk and the guidelines to make a plan for testing. Beginning at about age 45, all men should talk to their doctor about screening for prostate cancer. If you are Black or have a family history of prostate cancer or other cancers, you may be at higher risk and should talk to your doctor beginning at age 40.

VETERANS PROSTATE CANCER GUIDE

Prostate Cancer Early Detection: Age Recommendations and PSA Levels Chart

Discuss risk and benefits of prostate cancer screening with your doctor

Age 40-75 for high-risk individuals, including:

Have a baseline PSA and consider a baseline DRE

•Black/African Americans • Those with a family history of genetic mutations that increase the risk for prostate cancer •Those with concerning family or personal history of cancer

Average-risk individuals: If PSA less than 1 ng/mL and DRE normal (if done), repeat testing every 2 – 4 years Average-risk individuals: If PSA 1 – 3 ng/mL and DRE normal (if done), repeat testing every 1 – 2 years High-risk individuals: If PSA less than or equal to 3 ng/mL and DRE normal (if done), repeat testing every 1 – 2 years High-risk and average-risk individuals: If PSA greater than 3 ng/mL and/or a very suspicious DRE, talk with your doctor about further testing Talk with your doctor about if prostate cancer screening should continue. Testing after age 75 is recommended only in very healthy individuals. If screened, and PSA is 4 ng/mL or greater, or a very suspicious DRE, talk with your doctor about further testing

Age 45-75 for average-risk individuals

Age 75+

Based on National Comprehensive Cancer Network ® Clinical Practice Guidelines in Oncology (NCCN Guidelines ® ) for Prostate Cancer Early Detection 2024

IF YOU HAVE PROSTATE CANCER THERE ARE RESOURCES TO HELP YOU FIGHT IT.

VETERANS PROSTATE CANCER GUIDE

DIAGNOSING PROSTATE CANCER If cancer is suspected as a result of a PSA test, DRE, or other factors, further testing is needed. An MRI may be used to determine if a biopsy is needed. A prostate biopsy is the removal of samples of tissue from your prostate with a needle and the help of ultrasound. Exciting research shows that using both MRI and ultrasound can help doctors pinpoint aggressive prostate tumors.

GENETIC & BIOMARKER TESTING There are two different types of genetic tests that can give you and your doctors more information about your cancer and may inform treatment decisions. Genetic testing looks for inherited mutations (passed from parent to child). You may also hear it called germline testing. Genetic testing is done with a simple blood or saliva test. Biomarker testing checks for acquired genetic mutations, and may also be referred to as genomic testing or somatic testing. Biomarker testing is done on the tumor tissue or with a blood test. Both genetic and biomarker testing are recommended for advanced prostate cancer patients. Ask your healthcare team if these tests are right for you.

VETERANS PROSTATE CANCER GUIDE

GRADING AND STAGING Once prostate cancer is confirmed, additional tests are done to learn the location (stage) and Gleason score (grade) of the tumor. These will help you and your doctor understand your diagnosis and help guide treatment decisions. Staging is the process used to find out if the cancer has spread within the prostate or to other parts of the body. 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

Between 15 – 40% of men treated with localized prostate cancer will experience a recurrence (cancer later returns). About 5% of men are diagnosed with metastatic disease.

VETERANS PROSTATE CANCER GUIDE

Grading, using the Gleason score and/or grade group, indicates how quickly the tumor may grow and spread. The grade is the description of the tumor based on how abnormal the cells look under the microscope.

RISK GROUP GRADE GROUP GLEASON SCORE

DESCRIPTION

Gleason score cannot be determined

Gleason X

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

High/ Very High

Grade Group 4 Grade Group 5

Gleason 8 Gleason 9–10

TREATMENT Take the time to get educated on all available treatment options and potential negative side effects to make the best decision for you. The best treatment for one person may not be the best for another. The right treatment for you depends on many factors including: • Age • Gleason score (grade) of the tumor • Stage of prostate cancer • Risk category • Other health problems, such as heart disease, diabetes, or other chronic conditions • Your personal preferences Prostate cancer is a disease that can be treated by several different types of medical specialists. And the treatment chosen may mean that the doctor who diagnosed your cancer is not the one doing the majority of your treatment. You may meet with several doctors before you make a final decision about treatment.

VETERANS PROSTATE CANCER GUIDE

Consider a multidisciplinary team for the treatment of your prostate cancer. A multidisciplinary team is a group of health care professionals from different specialties that work together to suggest a treatment plan.

TIP

CONSIDER A MULTIDISCIPLINARY TEAM OF HEALTHCARE PROFESSIONALS

If you cannot work with a multidisciplinary team, meeting with a medical oncologist in addition to a urologist and/or radiation oncologist, will help you have a full picture of all treatment options available to you. This is especially important should your cancer return at some point in the future. Specialists involved in the treatment of prostate cancer include: Physicians: • Urologist

• Radiation Oncologist • Medical Oncologist • Primary Care Physician Other Healthcare Professionals: • Oncology Social Worker • Physical Therapist • Navigator • Nutritionist • Sexual Health Professional

VETERANS PROSTATE CANCER GUIDE

TREATMENT OPTIONS Early Stage Prostate Cancer

Active Surveillance Close monitoring of the status of the prostate cancer through regular office visits and repeat medical tests. Prostate cancer can grow slowly, allowing time to evaluate options. In addition to active surveillance for low risk disease, other early stage treatment options include 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 Known as a radical prostatectomy, is the removal of the entire prostate by a surgeon. Radiation therapy Uses radiation to destroy the cancer cells in the prostate while leaving the prostate in the body. It can be given in two ways: externally (from the outside) and internally (placed inside) to fight prostate cancer.

Cryotherapy Freezing of the tumor to destroy the cancer cells.

HIFU (High Intensity Focused Ultrasound) Uses heat to kill prostate cancer cells. One systemic therapy that may be used to treat early stage prostate cancer is hormone therapy: Hormone Therapy Also called androgen deprivation therapy or ADT, lowers the testosterone level in a man's body. This aims to stop tumor growth and/or shrink the tumor. ADT has always been an important treatment for advanced prostate cancer, and is sometimes used in combination with radiation therapy for high risk early stage patients.

VETERANS PROSTATE CANCER GUIDE

Advanced Prostate Cancer Advanced prostate cancer is typically treated with systemic therapies. Systemic therapies refer to any type of treatment that targets or travels through the entire body. These include: Hormone Therapy Also called ADT, lowers the testosterone level in a man’s body. Because prostate cancer cells use testosterone as fuel, ADT starves the tumor cells. Hormone therapies cannot kill prostate cancer, but can extend survival. Hormone therapy may be used in combination with other treatments. Immunotherapy Stimulates the immune system to kill cancer cells in men with advanced prostate cancer. Targeted Therapy Identifies, or “targets,”a particular genetic mutation in the tumor, with the goal of interfering with the specific molecules that drive the growth of the tumor. A targeted therapy approach is a form of personalized cancer treatment and is often associated with fewer side effects than other treatments. Radiopharmaceuticals Radioactive drugs given through a vein to men with metastatic prostate cancer. Chemotherapy Uses anti-cancer drugs to kill cancer cells. These drugs are usually given into a vein (intravenously) with a needle. This treatment is routinely given at a clinic or doctor’s office. Some chemotherapy drugs may be given as a pill. One local therapy that may be used to treat advanced prostate cancer is radiation: Radiation Uses high-energy rays to relieve pain from bone metastases and may also be used in combination with hormone therapy. It is important to work with your doctors to make informed decisions about your care. Learn about all treatment options, including clinical trials, and understand the possible side effects of each treatment.

VETERANS PROSTATE CANCER GUIDE

CLINICAL TRIALS A clinical trial is an investigation of an experimental treatment to see if it is safe to use and effective in fighting a disease, such as prostate cancer.

CLINICALTRIALS EVALUATE:

New drugs & diagnostic techniques

New combinations of treatments

New approaches to surgery or radiation therapy

New methods such as gene therapy

All clinical trials vary depending on the objective of the test. However, placebos are almost never used in cancer treatment trials.

Clinical trials follow strict guidelines and are highly controlled and regulated to provide the best protection to participants. A clinical trial consists of at least two groups, depending upon the study protocol. A study protocol is a plan that describes the schedule of tests, procedures, medications and dosages, and the length of the study. One group of patients will receive the experimental drug or treatment and the other group of patients will receive either the standard of care or a placebo which has no therapeutic value. However, placebos alone are almost never used in cancer treatment trials. Clinical trials are highly controlled and regulated. They are typically sponsored by pharmaceutical or biotech companies, the federal government, medical institutions, or private foundations. All treatments used today for prostate cancer are available because of past clinical trials and thanks to past clinical trial participants.

VETERANS PROSTATE CANCER GUIDE

MANAGING SIDE EFFECTS The side effects from treatment can include temporary to long term incontinence, erectile dysfunction, and/or other issues such as fatigue, pain, and depression. Talk with your doctor to learn how potential side effects can be managed. Side effects may include: • Incontinence: Surgery (prostatectomy) and radiation therapy can cause muscle damage that disrupts the way the bladder holds and discharges urine. • Erectile Dysfunction: Erectile dysfunction, or the inability to achieve or maintain an erection, is a common side effect following prostatectomy and radiation therapy. • Depression/Anxiety: Feelings of sadness, anger, and anxiety are common for people going through a major challenge like cancer. If you are having trouble coping, don’t be afraid to talk to your doctor or a mental health professional. Joining a support group may also be helpful. TIP

TALK TO YOUR DOCTOR ABOUT SIDE EFFECTS

VETERANS PROSTATE CANCER GUIDE

QUESTIONS TO ASK YOUR DOCTOR Before starting treatment, you should talk to your doctor about your options. You may want to seek a second opinion or even talk to several different doctors about all treatment options, their side effects, and the expected results.

QUESTIONS FOR THE DOC What are all of my treatment options?

What treatment do you recommend based on my stage and risk group? Why?

What are the potential side effects of the treatments we discussed?

How can these side effects be managed?

How will treatment affect my normal activities? Will it affect my sex life? Will I have urinary problems? Will I have bowel problems?

What will my treatment schedule be?

Am I eligible for a clinical trial?

How will you work with the VA for my care?

How can I find support and resources to help pay for my cancer treatment?

What questions haven't I asked?

VETERANS PROSTATE CANCER GUIDE

HEALTHY LIVING An overall wellness plan of healthy living is critical when it comes to prostate health and fighting prostate cancer. A growing list of studies show a strong connection between fighting cancer and healthy choices in diet, physical activity, and lifestyle.

MILK

Tips for Healthy Living • Eat a healthy, plant-based diet and limit animal products • Be physically active

• Seek to maintain a healthy weight • Limit the amount of alcohol you drink • If you use tobacco, stop; if you don’t, do not start • Protect your skin from UV radiation • Get enough good sleep • Have regular physical exams and talk with your doctor about your risk for prostate and other cancers

VETERANS PROSTATE CANCER GUIDE

HEALTHY EATING AND EXERCISE CAN HELP.

The ZERO Prostate Cancer Run/ Walk is the largest men’s health event series in America. Every year, the ZERO Prostate Cancer Run/ Walk Series takes place in many cities across the country. These events bring local

communities together to promote awareness, provide support, and raise funds. Join us as a walker, runner, or volunteer for this family friendly event in a city near you. Register at: zerocancer.org/runwalk.

VETERANS PROSTATE CANCER GUIDE

RESOURCES Life with prostate cancer can bring profound changes and challenges. Understanding the disease and how to manage it can increase your confidence in making changes to improve and maintain your health. At ZERO, we are dedicated to helping you live your best life possible. Learn more about our resources available on our website at zerocancer.org . ZERO360 – No one should face prostate cancer alone. Now you don’t have to. We offer a free, comprehensive service, staffed by case managers who help patients and their families navigate insurance, find resources to help pay for treatment and living expenses, connect you with emotional support services, and ensure access to care. Contact us toll-free at 1-844-244-1309 or zerocancer.org/zero360 . Us TOO Support Groups – zerocancer.org/supportgroups A variety of peer-led virtual and in-person groups are available offering emotional support, resources, and education to empower those impacted by prostate cancer to make informed decisions on testing, treatment, and management of side effects. MENtor – zerocancer.org/mentor A one-to-one peer support network where trained, volunteer MENtors have a wealth of insights to share based on their experiences. Inspire – zero.inspire.com An online support community that connects patients and loved ones to enhance the quality of life for all those affected by prostate cancer. ZERO Connect – facebook.com/groups/zeroconnect A Facebook support community for participants to share stories, ask questions, and connect. An invite-only Facebook group also exists for Black men/caregivers – email healthequity@zerocancer.org for information. Educational Resources – zerocancer.org ZERO offers a variety of educational resources and events for prostate cancer awareness, screening, treatment, and side effects.

VETERANS PROSTATE CANCER GUIDE

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.

VETERANS PROSTATE CANCER GUIDE

Phone: 202-463-9455 info@zerocancer.org

zeroprostatecancer/veterans

zeroprostatecancer

Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14 Page 15 Page 16 Page 17 Page 18 Page 19 Page 20 Page 21 Page 22 Page 23 Page 24

www.zerocancer.org

Made with FlippingBook flipbook maker