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PRESIDENT’S MESSAGE

Welcome to CPCC’s Fall Newsletter and to September 2019 Prostate Cancer Awareness Month!

It has already been a great year with detailed planning over 8 months leading up to the 2019 CPCC/UCSF Patient Conference on Prostate Cancer held on June 8, 2019 at the University of San Francisco. The conference was a major success. As a result of its excellence, Eric Small, M.D. Steering Committee Member and Professor of Medicine and Urology at the University of California, San Francisco announced that the conference will become an annual event. Plans are underway for next year’s 2nd Annual CPCC/UCSF Patient Conference on Prostate Cancer. It is tentatively scheduled for 2 days, June 13 and 14, 2020.

We would like to thank Stan Rosenfeld for his years of service to CPCC as a long-time Board Member. He will be missed as a CPCC Board member, but he will continue to interact with CPCC. In fact, he will continue to lead the Support Group Leaders’ Workshops for CPCC as he has done for many years. The Northern California Prostate Cancer Support Group Leaders’ Workshop will take place on November 21, 2019 at UCSF.

CPCC welcomes Jessica Myers-Schecter to the Board of Directors. Jessica is a strong and passionate advocate in the field of prostate cancer, and she edits and publishes Prostatepedia, an exemplary on-line journal of prostate cancer articles and interviews. Jessica is the daughter of Dr. Snuffy Myers. Welcome, Jessica!

In recognition of September as Prostate Cancer Awareness Month, Bill Doss, our illustrious Board Member, is again this year leading the Proclamations effort across the state. Please see the write-up elsewhere in this Newsletter to see how you can help spread the word.

Tom Kirk, CPCC Vice President, and I will be attending the 15th Annual Meeting & Gala of the National Alliance of State Prostate Cancer Coalitions (www.naspcc.org), representing California. The event will be a celebration of 15 years of NASPCC helping prostate cancer coalitions, patients and their families. It will take place at the Hotel Monaco in Washington, DC, October 18-20, with a line-up of stars from Sloan- Kettering, Harvard, Johns Hopkins, Duke and other institutions and practices. CPCC Board Member, Dr. Joe Scherger, will also present. See more details elsewhere in this Newsletter.

CPCC will be holding its Face-to-Face Board Meeting on Monday, November 25, 2019 at the Westin LAX in the private “Boardroom” located in The Daily Grill. The Board Meeting will take place from 10:00 am to 2:30 pm, and all guests are welcome. Following the Face-to-Face Meeting we will immediately hold a Roundtable on Access Issues in collaboration with NASPCC, which will be sponsored by Pfizer. During the Roundtable we will also hear from Sarah Connor of UCLA regarding the IMPACT Program, which is one of CPCC’s core priorities that we support. IMPACT helps underserved prostate cancer patients in the State with medical care and counseling. There will be a Dinner at 6:30 following the Roundtable for all those who are able to stay. Please contact me at mgrey@ucsd.edu if you would like to be included in the Roundtable and share your thoughts and concerns regarding access to care.

Keep up the fight against prostate cancer! -- Best regards, Merel Grey Nissenberg, President

“Fighting Prostate Cancer in California since 1997!”

www.prostatecalif.org A Proud Participant in the National Alliance of

State Prostate Cancer Coalitions

News

Volume 19, Issue 3 Fall 2019

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CALIFORNIA DESIGNATES SEPTEMBER 2019 AS PROSTATE CANCER AWARENESS MONTH

For the past fourteen years William Doss, CPCC Board member, has spearheaded a project on behalf of CPCC to obtain proclamations from legislative bodies throughout the State of California to recognize September as Prostate Cancer Awareness Month. Over the years this activity has generated much publicity, educating thousands of people about the prevalence of prostate cancer and the importance of early detection. Bill receives help from a cadre of devoted volunteers who approach their local county and city governments about this project. This year the California Assembly Concurrent Resolution 111 was sponsored by Assembly Member Kevin Kiley. If you are interested in participating in this project in the future, contact Bill at email: wdoss@surewest.net.

CALIFORNIA ASSEMBLY CONCURRENT RESOLUTION NO. 111 PROSTATE CANCER AWARENESS MONTH This measure would proclaim the month of September 2019 as Prostate Cancer Awareness Month in California.

WHEREAS, Prostate cancer is the most frequently diagnosed cancer in men and the second leading cause of cancer deaths in men; and WHEREAS, The American Cancer Society estimates there will be 174,650 new cases of prostate cancer in the United States in 2019, resulting in an estimated 31,620 deaths; and WHEREAS, It is estimated 24,550 men in California will be diagnosed with prostate cancer this year and it is estimated 4,470 California men will die from this disease; and WHEREAS, Black men in the United States and the Caribbean have the highest documented prostate cancer incidence rates in the world; and WHEREAS, Early prostate cancer usually has no symptoms and studies suggest strong familial predisposition may be responsible for 5 to 10 percent of the disease cases; and WHEREAS, Late stage prostate cancer commonly spreads to the bones, which can cause pain in the hips, spine, ribs, or other areas in the body; and WHEREAS, The five-year survival rate approaches 100 percent when prostate cancer is diagnosed and treated early, but drops to 30 percent when it spreads to the other parts of the body; and WHEREAS, The American Cancer Society recommends that men should have an opportunity to make an informed decision about whether to be tested for prostate cancer based on their personal values and preferences; and WHEREAS, Prostate cancer treatment decisions should be based on clinician recommendations and patient values and preferences; now, therefore be it Resolved by the Assembly of the State of California, the Senate there of concurring, That the Legislature designates September 2019 as Prostate Cancer Awareness Month; and be it further Resolved, That the Legislature joins communities across our nation to increase awareness about the importance for men to make an informed decision with their health care provider about early detection and testing for prostate cancer, and be it further Resolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution.

William Doss receiving Concurrent Resolution No. 111 from Assembly Member Kiley on September 3, 2019

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ANNUAL NORTHERN CALIFORNIA PROSTATE CANCER SUPPORT GROUP LEADERS’ WORKSHOP PLANNED

The annual Northern California Prostate Cancer Support Group Leaders’ Workshop facilitated by Stan Rosenfeld will be held Thursday, November 21, 2019 from 9:00 a.m. to 4:30 p.m. It is open to all Prostate Cancer Support Group Leaders, Facilitators and Administrators, as well as prospective Group Leaders. This workshop is designed to share what others are doing with their own support groups to help you become a more effective leader. A significant proportion of the day will focus on various challenging questions and situations that arise during support group meetings. The speaker will be James Smith MD, MS, Associate Professor and Director, Male Reproductive Health, UCSF. Among his specialties, Dr. Smith treats men with erectile dysfunction. The Workshop is free and will include a continental breakfast and a delicious healthy lunch. Interested persons from anywhere in Northern or Central California are encouraged to attend. The information shared should be very helpful in improving and reinforcing skills to lead a support group to more productive and rewarding outcomes. For additional information, please contact Stan at email: vegstan2@ix.netcom.com. Submitted by Stan Rosenfeld

NASPCC CELEBRATES 15TH ANNUAL MEETING & GALA IN OCTOBER 2019

NASPCC will hold its 15th Annual Meeting & Gala at the landmark location, the Hotel Monaco, in Washington, DC, October 18-20, 2019. There will be many outstanding clinicians and researchers presenting information on best practices and current and future directions in prostate cancer. At the Saturday night Gala, NASPCC will be honoring Dr. Paul Schellhammer of Eastern Virginia Medical School for his contributions to the field of prostate cancer. The James West Spirit Award will be presented to Phillip Buck Olsen of Hawaii. Dr. James Gulley from the National Institute of Health will deliver an address on Immunotherapy in Prostate Cancer after Dr. Schellhammer’s remarks. The Agenda will be similar to the Agenda used for the CPCC/UCSF Patient Conference on Prostate Cancer held at UCSF on June 8. Guests are welcome to attend the Annual Meeting proceedings and the Saturday Gala. For information, please contact Merel Nissenberg at mgrey@ucsd.edu.

MALECARE HOLDS PROSTATE CANCER SUMMIT ON OCTOBER 5, 2019 IN NYC An Invitation from Darryl Mitteldorf from the New York State Prostate Cancer Coalition

Dear Fellow State Coalition Leaders:

It's time to get your tickets and help the National Alliance of State Prostate Cancer Coalitions (NASPCC) with 50% of your ticket revenue.

Please go to http://www.prostatecancerconference.org and order your tickets to the October 5, 2019 Prostate Cancer Patient Conference in New York City. A day-long event featuring twelve prostate cancer doctors from major cancer centers across the USA. This is a first-of-its-kind prostate cancer patient conference to feature an all-female faculty. The NYC prostate cancer summit was produced by patients for patients.

When you get your tickets, click on "enter code" and then type in NASPCC. Please feel encouraged to email your state lists and support group members.... everyone can use the NASPCC code, so please spread the word. Tickets include breakfast, lunch, drinks and snacks and a major discount at the Intercontinental Barclay Hotel.

More information about the conference, including the agenda and speaker list, can be found at http://www.prostatecancerconference.org.

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FIRST CPCC/UCSF PATIENT CONFERENCE ON PROSTATE CANCER A SUCCESS

On June 8, 2019, the California Prostate Cancer Coalition (CPCC), in collaboration with the Helen Diller Family Comprehensive Cancer Center at the University of California San Francisco, presented the 2019 CPCC/UCSF Patient Conference on Prostate Cancer on the UCSF’s Medical Campus. The Conference was devoted to patients, families, caregivers, health care providers and advocates. Serving on the Steering Committee headed by Eric Small, MD, Professor of Medicine and Urology at UCSF, were Stan Rosenfeld, Merel Nissenberg, Tom Kirk and Tiffany Rizzo. The event was sold out with 370 people in attendance and standing room only.

An outstanding agenda was presented at the day-long conference. Presenters included leading UCSF faculty members and researchers: Dr. Small, Dr. Peter Carroll, Dr. Matt Rosenberg, Dr. Mack Roach, Dr. Felix Feng, Dr. Rahul Aggarwal, Dr. June Chan, along with CPCC Board Members Dr. Leonard Marks from UCLA, and Dr. Joe Scherger from Eisenhower Medical Center in Rancho Mirage. CPCC Board Members Joe Ferrara, Tom Kirk, Stan Rosenfeld and Merel Nissenberg participated as presenters. Many other CPCC Board members were in attendance assisting with the event.

Due to the success of the event and the great interest shown by the prostate cancer community, Dr. Small announced that this conference will be the 1st Annual CPCC/UCSF Patient Conference. Plans are underway for the 2020 2nd Annual CPCC/UCSF Patient Conference on Prostate Cancer next June.

See pictures from the event and the conference agenda below. The videotaped conference proceedings can be viewed online using the following links:

• From the CPCC website: https://prostatecalif.org/2019-prostate-cancer-patient-conference/ • https://uctv.tv/2019-prostate-cancer-conference/

CPCC is indebted to UCSF and the Helen Diller Family Comprehensive Cancer Center for joining us in holding this conference and lending such outstanding faculty to help make it a success. Submitted by Merel Grey Nissenberg

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HIGHLIGHTS FROM THE 2019 CPCC/UCSF PATIENT CONFERENCE ON PROSTATE CANCER IN PICTURES

Eric Small, MD, Conference Moderator and Conference Steering Committee member

Stan Rosenfeld, Patient Advocate and Conference Steering Committee member

Merel Nissenberg, Esq., President, CPCC, and Conference Steering Committee member

Matt Cooperberg, MD, reviewed risk assessment and the treatment of low risk PC.

Leonard Marks, MD, discussed focal therapy for localized disease.

Joseph Scherger, MD, discussed the role of the primary care physician in the management of PC

Panelists Tia Weinberg, Richard Ridington, Walt Trask and Joe Ferrara discussed the challenges of decision-making.

James Yu, MD, and Mac Roach, MD, discussed treatment of intermediate and high-risk disease and multimodal therapy

Peter Carroll, MD, presented treatment options for low risk, localized prostate cancer

Panelists: Merel Nissenberg, Esq, Brad Ekstrand, MD, David Lowther, MD, and Tom Kirk discuss access to care and optimizing care

i d Photographs courtesy of Frank Balthis, CPCC Board member

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MEET JESSICA MYERS-SCHECTER: CPCC’S NEWEST BOARD MEMBER

My name is Jessica Myers-Schecter and I am delighted to have been newly elected to the Board of the California Prostate Cancer Coalition. I’ve worked within the prostate cancer community since 1996 when I helped my father and mother, Drs Snuffy and Rose Myers, start a newsletter called Prostate Forum. As my father began then eventually closed the clinic American Institute For Disease of the Prostate, I worked to transform Prostate Forum from a single physician marketing newsletter to a patient education magazine that features a broad spectrum of the leading voices in prostate cancer. Today, the monthly Prostatepedia magazine includes in-depth conversations with leading prostate cancer doctors, patient advocates, and patients in the United States, Canada, Europe, India and Australia. Our goal is to ask the kinds of questions a patient, his spouse, or his adult daughter might ask: what does each aspect of treatment mean for his quality of life and long-term survival? What are the consequences of treatment and how can we manage them? There are a few topics we return to each year: immunotherapy, genomics, chemotherapy, imaging, erectile dysfunction after treatment, and diet and lifestyle. Others are new: biochemical recurrence and focal therapy. How patients can help other patients. We attempt to include as many voices as possible so that all members of a man’s care team are represented: medical oncologists, urologists, radiation therapists, nurses, psychologists, sexual medicine specialists, caregivers, and advocates. Each patient has a community, a circle, behind him. We aim to honor that community. One of my core beliefs is that there are fewer things more powerful than a strong dynamic community—and that the only real path forward in life lies in aligning ourselves with people who understand what we’re going through and can offer guidance through the jungle ahead. I have aged along with Prostatepedia—moving from naïve grad student to young wife to harried working mother—and have absorbed countless invaluable lessons from the men and women I’ve encountered along the way. Those lessons came into play when my son was born prematurely, at 28 weeks, in 2008. During his 9-week NICU stay, I was thrust into the role of frightened caregiver with virtually no one to talk to who understood what I was going through. I felt as if what was happening to him and to me had never happened to anyone else before. In the midst of my sadness and fear, I came to rely on the wisdom gleaned from the prostate cancer world: First, seek out wise advisors: other patients, seasoned doctors, connected health advocates. Second: never lose hope. Do whatever you have to do to convince yourself that everything will turn out for the good,

or it surely will not. Third: you are a valuable member of your own health care team. Your insight and opinions matter. Never let anyone

convince you otherwise. Fourth, educate yourself. You need to fully understand what is happening. If you don’t understand something, ask

the doctor to repeat it. As many times as needed until you get it. Five, Distraction goes a long way. Even in the toughest times, you can find joy in the small things: a walk in the

woods, dinner with a friend, a funny TV show, a really good cup of coffee. My son is now a healthy 10. He loves Legos, Fortnite, doing science projects with my Dad, and fighting with his sister. There seem to be no real consequences of his early birth, a fact I attribute to the amazing advances in medicine. We truly are lucky to live in the times we do. We understand more now than we ever have before about how the body works and how we may heal it when broken. Prostatepedia has matured as well: we continue to expand our network of doctors, patients, and advocates. If there’s a topic we’ve not covered that you think we should, please let me know. And if you would like to share your prostate cancer story, please reach out. My email is Jessica@prostatepedia.net. I would love to hear from you.

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California Prostate Cancer Coalition Information

Left to Right: William Doss, Westley Sholes, Tiffany Razzo, Beverly Nicholson, Tom Kirk, Merel Grey Nissenberg, Stan Rosenfeld, Ericka Maldonado-Aviles, guest speaker, and Earl Jones at November 2018 Face to Face CPCC Board Meeting.

Board of Directors Merel Grey Nissenberg, Esq, President Thomas Kirk, Vice President Earl H Jones Jr., Treasurer Tiffany Razzo, Secretary Frank Balthis Arthur "Tony" Blain, MD, MBA, FAAFP Barry Chauser, MD Marc A. Dall'Era, MD William Doss Joe Ferrara Arthur Lurvey, MD, FACP, FACE Carol Marcusen, MSW, LCSW Leonard S. Marks, MD Jessica Myers-Schecter Beverly Nicholson, RN, CNS Joseph E. Scherger, MD, MPH Westley Sholes, CPCC-A President Sam Wells Mailing Address: 6709 La Tijera Blvd, Ste 473 Los Angeles, CA 90045 Phone: (310)525-3570 Email: cpcc@prostatecalif.org

Website Earl Jones, webmaster: ejonesjr12@ca.rr.com

Newsletter Editor Beverly Nicholson beverlynicholson@comcast.net Donate Now Donate online at http://prostatecalif.org/donate-now or mail donations to: California Prostate Cancer Coalition, c/o Earl Jones, Treasurer 4581 Don Felipe Drive Los Angeles, CA 90008 CPCC is a 501(c) (3) not-for-profit public benefits corporation (EIN 94-3349907). For information concerning gifts in trusts or stock transfers call (310) 525-3570 or email cpcc@protatecalif.org. CPCC is a 501(c) (3) organization and, as such all contributions you make to CPCC are tax-deductible. Since we are an all-volunteer organization, we need financial resources to keep up our work including making essential information on prostate cancer available to men and families in California, holding annual support group leader’s workshops, publishing a newsletter, maintaining our website, sponsoring educational conferences, and other related programs. Please help us continue to work for you! Thank you.