2022/2023 Advanced Prostate Cancer Newsletter

ZERO's Advanced Prostate Cancer Newsletter offers specific information for advanced prostate cancer patients and their loved ones.


WINTER 2022/2023


WINTER 2022/2023

Who We Are

ZERO – The End of 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. Our Mission

ZERO is a 501(c)(3) philanthropic organization recognized with four out of four stars by Charity Navigator, accredited by the Better Business Bureau, with regional chapters across the country. We dedicate 85 cents of every dollar to research and programs.


As many of you may be experiencing first-hand, the COVID-19 pandemic continues to present increased financial and emotional challenges for prostate cancer patients and families. During these tough times, you are NOT alone. ZERO has free comprehensive resources to help you and your loved ones through your cancer journey including access to financial assistance with its ZERO360 case management service and emotional support with peer mentoring and nationwide support groups at the local level. Despite the hardships facing our community, there is good news to celebrate and there are more reasons for hope with recent advances in the prostate cancer treatment and care landscape. Last year, an FDA approval came for a second PSMA-targeted PET imaging agent, Pylarify ® . Since then, many institutions have adopted this new technology, allowing more patients across the U.S. access to advanced prostate cancer imaging. PSMA PET imaging is a game-changer and allows doctors to see metastatic or recurrent prostate cancer earlier, anywhere in the body. These imaging advances are a key component to successfully managing prostate cancer care and they have the potential to allow patients and families to make more informed treatment decisions that will lead to improved outcomes.

Alicia Morgans M.D., M.P.H. Dana-Farber Cancer Institute Chair – ZERO Medical Advisory Board

Most recently, Nubeqa ® (darolutimide) gained an expanded FDA approval for use in combination with docetaxel (chemotherapy) for patients with metastatic hormone-sensitive prostate cancer (mHSPC). The approval was based on data reported in the ARASENS trial, which began in 2016. The results of this trial showed that darolutimide plus docetaxel plus ADT (androgen deprivation therapy) resulted in improved overall survival when compared to ADT and docetaxel alone. This advance provides another treatment option, and a triplet therapy, for patients with prostate cancer that has spread beyond the prostate but whose cancer is responsive to hormone therapy. Lastly, with the increased prevalence of telemedicine throughout the COVID-19 pandemic, the NIH (National Institutes of Health) has announced that it will award $23 million to four academic institutions to establish centers of excellence that will conduct research on the role of telehealth in delivering cancer-related health care. This research aims to identify gaps in telehealth, develop innovative ways to use telehealth in cancer care, and address telehealth-related disparities among racial and ethnic groups, rural residents, older adults, and people who have limited digital literacy. These are exciting developments that will improve the standard of care and increase access for patients. Remember, there is always reason for hope. It is an honor to be part of the inspiring ZERO community who is making a difference together. Wishing you and yours health and wellness, Dr. Alicia Morgans



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Q: Who in my family should consider talking to a genetic counselor or taking a genetic test? A: If you have prostate cancer, it’s usually best to start with you. If you have a mutation, then anyone else in your family can be tested to see if they inherited the mutation or not. These gene mutations are passed on from parent to child. If you have a mutation, any sibling might have also inherited it, whether they have cancer or not. Same with your children. Sons and daughters, sisters and brothers, all have a 50% chance to inherit these mutations. Q: Can you address privacy concerns that some patients may have, as well as how they’ll find out test results? A: There are laws in place to protect the privacy of your genetic test results. Myriad Genetics and many other laboratories will only release your results to your healthcare provider. When testing with Myriad Genetics, your results will be sent to the healthcare provider who ordered your test within 2-3 weeks, who will discuss the results with you. While these results are private, we encourage you to discuss them with your family to help make decisions that could save lives. Q: Does health insurance typically cover the costs of these tests? A: We are working on many fronts to make genetic testing information more accessible and affordable. 96% of patients for whom genetic testing is appropriate are covered, most of them at 100%. If there is any out of pocket or deductible, we will work with you to do whatever it takes to make sure that this information is affordable. Q: How can I get connected to a genetic counselor? A: Talk to your healthcare provider or visit your local hospital. In addition, the National Society of Genetic Counselors offers a directory to help you find a genetic counselor in your area, or via telehealth. You can visit their website at nsgc.org .

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 testing identifies gene mutations that can impact patients and their families. Read our Q&A below to learn more about genetic testing and advanced prostate cancer, and visit zerocancer. org/genetic-testing for more information. Q: What can our DNA tell us about family risk for prostate cancer and other cancers? A: We all have genes that protect us from getting cancer. If one of those genes has a mutation, or alteration, it can no longer protect us and thus increases our risk to develop prostate or other cancers. Q: If I have advanced disease, are there other reasons I should speak to a genetic counselor beyond understanding family risk? A: If you have advanced prostate cancer, there are now different treatment options that are targeted towards these gene mutations. Genetic testing may help you qualify for some of these treatments, including PARP-inhibitors and immunotherapies, such as pembrolizumab. These are some of the reasons the National Comprehensive Cancer Network recommends that all men with metastatic prostate A: A PARP inhibitor is a drug that has been targeted to treat cancers in individuals with a BRCA1, BRCA2, or a handful of other gene mutations. Q: What is immunotherapy? A: Immunotherapy, such as pembrolizumab, is a therapy that targets cancers with certain mutations and works with the immune system to fight them. cancer receive genetic testing. Q: What is a PARP Inhibitor? Rob Finch Director of Urology Medical Affairs at Myriad Genetics

There are many options for genetic testing. To learn more about one option for prostate cancer, visit prolaris.com/genetic-testing/zero22/.



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OPTIMIZING LIFESTYLE IN PROSTATE CANCER: The Importance of Healthy Sleep and Plant-Based Diets

Nutrition is also extremely important for patients with prostate cancer and their families. Fortunately, the same dietary patterns that are good for the heart are also good for prostate cancer.

Leading a healthy lifestyle is extremely important in prostate cancer. This is especially true for men with advanced prostate cancer who are taking hormonal therapy. These treatments can cause changes in metabolism and increase the risk of cardiovascular disease.

Stacy Loeb M.D., M.Sc., Ph.D. (hc), New York University

Men with advanced prostate cancer are also more likely to have disturbances in their sleep. There are many reasons for this. Progression of the cancer may lead to pain or anxiety that can disturb sleep. The treatments for prostate cancer may also cause problems for sleep, such as hot flashes. Poor sleep has many negative effects for physical and mental health, and can lead to accidents.

One important tip is to reduce consumption of meat, or better yet, to avoid it altogether. The World Health Organization considers processed meat (such as hot dogs, deli meats, and bacon) a Group 1 carcinogen. This means that it definitely causes cancer in humans, and is in the same category as asbestos and tobacco. Other types of meat such as beef, lamb, and pork are considered Group 2a carcinogens, which mean they probably cause cancer in humans. Meat and dairy products are also leading sources of saturated fat in the diet, which contributes to cardiovascular disease. By contrast, healthy plant-based foods such as fruits, vegetables, beans, and legumes contain important cancer-fighting components like fiber and antioxidants. Several new studies came out this year showing the benefits of eating more healthy plant-based foods for prostate cancer, and other major health issues such as erectile function and diabetes. ANNOUNCEMENT: We have a new study at NYU Grossman School of Medicine to examine the value of a website with sleep and lifestyle recommendations for patients with prostate cancer and their families. If you are interested in learning more about the study, please contact us by phone or email: Nataliya Byrne: Nataliya.Byrne@nyulangone.org, 646-501-2681, or Tatiana Sanchez Nolasco: Tatiana.Sancheznolasco@nyulangone.org, 646-501-2550.

Some of the most common sleep disturbances include insomnia and obstructive sleep apnea. If you have symptoms like snoring or excessive daytime sleepiness, consider seeing a sleep specialist for evaluation and treatment. It is also important to practice good sleep hygiene as part of your daily habits. This includes maintaining a comfortable bedroom environment, keeping a consistent sleep schedule, and avoiding bright light, caffeine, big meals, strenuous exercise, and stressful activities shortly before bedtime.



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THE BENEFITS OF PALLIATIVE CARE for Advanced Prostate Cancer Patients

Advanced care planning Coordination and continuity of care Appropriate community palliative care and

Living with advanced stage prostate cancer, even with excellent care from oncology teams, can be challenging and patients often experience unmet physical, social, and spiritual needs. Palliative care is the service utilized to help meet those needs. The Center for Advancement of Palliative Care defines it as “ . . . specialized

hospice referrals Caregiver support End of life care 3

Kimberly A. Curseen M.D., Winship Cancer Institute, Emory University Hospital

Palliative care is patient-centered and may be delivered in the following settings: Outpatient clinics often embedded with oncology or freestanding In-home palliative care for patients who have difficulty getting to clinic appointments This flexibility allows for many patients to access palliative care services regardless of their physical location in the healthcare system. Palliative care is often confused with hospice care. Although hospice is the medical service insurance benefit providing palliative care to patients at the end of life, not all palliative care is hospice care. Palliative care focuses on managing symptoms of serious illness concurrently with ongoing treatment, while hospice care focuses on supporting patients in living fully and comfortably, while providing support to their caregivers/families as the patient faces the end of life. Long-term care facilities Hospital consultations To learn more about palliative care and to locate local services, an excellent resource is getpalliativecare. org. If you believe that palliative care could enhance your quality of life, feel empowered to ask your oncology team for a referral. _________________________________________________

medical care for people with serious illness. ” It is administered by a specially trained team of doctors, nurses, and other specialists working collaboratively with other doctors to support a patient’s treatment plan. “At any age and at any stage in a serious illness, palliative care can be appropriately provided along with curative treatment.” 1 Palliative care recognizes individuals as multidimensional beings while continuing to address the physical, psychological, and spiritual concerns of patients with advanced cancer for the purpose of helping them reach their clinical goals. In an effort to improve the quality of life and clinical outcomes, palliative care services also assist patients, caregivers, and families with advance care planning, securing appropriate resources, and in making difficult decisions. There is a growing body of literature recognizing the importance of incorporating palliative care in the management of patients with advanced cancer. The early integration of palliative care for advanced cancer patients is ideal since it allows for anticipatory symptom management and mitigation of suffering, as well as improved communication concerning patient goals of care, treatment preferences, and prognosis. 2 The American Society of Clinical Oncology (ASCO) has supported the integration of early palliative care in patients with advanced cancer and high symptom burden. 3 In 2016, ASCO, partnering with the American Academy of Hospice and Palliative Medicine, published guidance on high-quality palliative care for patients with advanced cancer. These guidelines are as follows: Pain and symptom management Psycho-social assessment and management Spiritual and cultural assessment and management Communication and shared decision making

1 Connor SR. Hospice and palliative care: The essential guide: Taylor & Francis; 2017.

2 Dalal S, Bruera E. End-of-Life Care Matters: Palliative Cancer Care Results in Better Care and Lower Costs. The oncologist. 2017;22(4):361-8.

3 Ferrell BR, Temel JS, Temin S, et al. Integration of palliative care into standard oncology care: American Society of Clinical Oncology clinical practice guideline update. Journal of Clinical Oncology. 2016;35(1):96-112.



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Clinical trials are research studies performed with patients that are aimed at evaluating a medical, surgical, or behavioral intervention. They are the primary way that researchers find out if a new treatment, like a new drug or diet or medical device, is safe and effective in people. All current prostate cancer treatments are available because of past clinical trials and thanks to past clinical trial participants. There are many clinical trials available for advanced prostate cancer patients. Oftentimes people do not participate in a clinical trial because they did not know they were eligible or that one is available. Be sure to ask your doctor if a clinical trial may be right for you. To learn about available clinical trials, please visit our clinical trial finder tool at zerocancer.org/find-a-clinical-trial .



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committed disparities


obstacles to healthcare and coordinated high-quality specialty care; and ensuring that families have the resources to manage their health and to navigate the primary and specialty healthcare delivery system. One of the starkest disparities in prostate cancer is experienced by Black men. Specifically, Black men are approximately 1.5 times more likely to get prostate cancer, often present with more advanced disease and higher PSA numbers, and are more than twice as likely to die from prostate cancer, compared to White men. ZERO created the Black Men’s Prostate Cancer Initiative specifically to address these disparities, and to provide Black men and their families with prostate cancer education, awareness, resources, and support. This initiative includes support groups specifically for Black men diagnosed with prostate cancer, a podcast series to amplify the issues Black men face as they navigate the healthcare delivery system, an annual Health Equity Symposium, and a “Prostate Cancer in the Black Community” film series to raise awareness about prostate cancer and the impact of the disease on families in the Black community. For more information about the Black Men’s Prostate Cancer Initiative, visit zerocancer.org/get-support/black-mens-prostate- cancer-initiative.

eliminating in prostate cancer and ending prostate cancer for all families. It is our goal for everyone to have a fair and just opportunity to prevent, find, treat, and survive prostate cancer, regardless of race, the financial resources one has or has access to, or where one lives. This aspiration is called health equity. Achieving health equity requires removing

Dr. Reggie Tucker-Seeley ZERO Vice President, Health Equity


Prostate cancer is the most common cancer diagnosis among American Veterans with one in five being diagnosed in their lifetime. With almost half a million Veterans currently being treated for prostate cancer within the Veterans Administration (VA), Veterans remain one of the most vulnerable groups. 2022 was one of the most significant years for the ZERO Prostate Cancer Veteran’s Initiative. This past fall, we launched our Veterans Advisory Board, a group of committed Veterans whose purpose is to help ZERO advance the patient needs of the Veteran community. On the legislative front, ZERO led the fight to pass the Veterans’ Prostate Cancer Treatment and Research Act, which will improve access to prostate cancer care at the VA. We look

Ali Manson ZERO Vice President, Government Relations and Advocacy

forward to working with our Veterans partners to finish the job and ensure it is implemented in a patient- centric way. Another victory for prostate cancer came with the passage of the Honoring our PACT Act of

2022, which greatly expands VA healthcare benefits for Veterans with toxic exposure during our nation’s wars. Toxic exposures such as Agent Orange have been definitively linked to prostate cancer, so ensuring that our Veterans get timely and proper care is a major step in the right direction. Go to zerocancer.org/veterans to learn more about ZERO’s efforts to help Veterans with prostate cancer.



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Prostate Cancer SUPPORT PROGRAMS ZERO360: Comprehensive Patient Support zerocancer.org/zero360 ZERO360 helps patients navigate insurance, find financial aid resources, connect with support services, and secure access to care. To connect, call 1(844) 244-1309 . Us TOO Support Groups zerocancer.org/supportgroups Us TOO Support Groups offer in-person and virtual peer support, resources, and education to empower men to make informed decisions on testing, treatment, and management of side effects. Groups are also available for special interests, including: Veterans, Black Men, LGBTQIA+ Community, Caregivers, Spanish Language, Deaf Men, and others. Online Support Services ZERO Connect ( facebook.com/groups/zeroconnect ) is a Facebook-based support group for participants to share stories, ask questions, and connect. Invite-only Facebook groups also exist for Black Men (email info@zerocancer.org for information). The Inspire Online Support Community ( zero.inspire.com ) connects patients, families, friends, and caregivers. Peer Support MENtor is a peer support network at zerocancer.org/mentor for anyone who has received a prostate cancer diagnosis. ZERO’s trained, volunteer MENtors have a wealth of insights to share based on their experiences. Educational Resources zerocancer.org/learn ZERO offers a variety of educational resources for prostate cancer awareness, early detection, screening, treatment, and side effects. Each year, the ZERO Prostate Cancer Summit brings patients, caregivers, and advocates together to hear the latest information from prostate cancer experts and provide needed support and advocacy opportunities. WE’RE SAVING A SPOT FOR YOU at the Most Impactful Annual Prostate Cancer Event

This annual event connects patients, survivors, and loved ones with medical experts, support, and education. The 2023 Summit will include special in-person and virtual sessions for advanced prostate cancer patients and their families, including support group conversations and treatment, imaging, and research updates for advanced prostate cancer featuring various speakers from ZERO’s Medical Advisory Board.

Learn More and REGISTER at zerocancer.org/summit



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This publication is provided with support from:

201 N. Union St., Mailbox 110 Alexandria, VA 22314 Phone: 202-463-9455 Toll-free line: 888-245-9455 info@zerocancer.org ADVANCED PROSTATE CANCER NEWS

© 2023 ZERO ® Prostate Cancer 02/23


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