AS 101: Schooling patients in the "gray zone," newbies and even old hands on active surveillance
Come to the ASPI premiere on 9/24
(The Whites visit Dr. Steve Spann in a scene from new AS 101)
(Editor’s note: ASPI will be premiering the first AS 101 class at noon ET on September 24. Click this link to learn more and register.)
By Howard Wolinsky
Active surveillance (AS) for low-risk to intermediate-risk prostate cancer seems like “an overnight success.” It only took 30 years for the monitoring strategy to move finally from academia into large and small mainstream urology practices.
Since 2014, AS--close monitoring of low-risk prostate cancer with PSA blood testing, MRIs and biopsies--has exploded with a boost from a new generation of AS-friendly patients. Patient advocates have played a role in this through their roles in research, support, and education.
Specialized support groups have emerged since 2017 because men on AS were intimidated by general support groups, where distraught patients regularly complained about serious concerns such as with erectile dysfunction, diapers, penis shortening, hot flashes, brain fog, and so on.
But recently some of the leaders in AS support have realized that our meetings were attracting some newly diagnosed patients but not those in the limbo of “gray zone” of PSA 4-10 who have not been diagnosed.
I have been in the zone—I spent June through December 2010 there—and I can attest it’s not easy flying without a net. It was almost easier to be diagnosed and know what O was dealing with than to live with the uncertainty.
Many men show up for support meetings to get ongoing support. (Partners and spouses rarely attend our AS meetings.)
AnCan is there for patients with support meetings four times a month. ASPI (Active Surveillance Patients International), Canada’s Active Surveillance Nationwide Support Group, and others meet once a month. So there are lots of days and nights when no support is available
Many of those with rising PSAs who have not been diagnosed can find it difficult to find support while dealing with anxiety and sleepless nights. The newly diagnosed also face this problem.
That’s where the concept of Active Surveillance 101 came in.
AS patient advocates from AnCan, ASPI and the Canadian group met in late 2021 to discuss programming for patients, their partners, and families in 2022. Phil Segal from Toronto suggested that we find a way to reach out to those who are worried about prostate cancer because of rising PSAs but who have not been diagnosed. Also, newly diagnosed men need help and experienced patients can do with a refresher course.
Bob Allan from the Canadian group, Mark Lichty, of ASPI, Joe Gallo, of ASPI and AnCan, and I got on board.
We agreed there was a need for a basic video series for the unsupported men and their family caregivers. We called it AS 101, like a fundamental college course.
Alex Scholz, executive director of Prostate Cancer Research Institute, which is experienced in producing programming for patients like us, gave our effort a boost with her generous offer to professionally record and edit our videos.
We formed a steering committee we call the Active Surveillance Coalition.
ASPI will be premiering the first AS 101 class at noon ET on September 24. Click this link to learn more and register.
The need for information and support is huge for those affected by early-stage, localized prostate cancer.
This year, nearly 270,000 American men will be diagnosed with prostate cancer, up about 20,000 over 2021, according to the American Cancer Society. About one-third of them will have low-risk lesions (Gleason 6). Of this group, 60% go on AS in the United States and while up to 90% go on AS in Canada.
It can take a leap of faith, and rock-solid education and support, for a man diagnosed with cancer–even low-risk cancer--to have the confidence to opt for AS, not treating the cancer. Partners, family, and doctors may not be supportive. This is true, even though experts like Dr. Laurence Klotz, of the University of Toronto, and a father of AS, say, “pure” Gleason 6--or Gleason Grade Group 1)--will never spread or kill.
About five years ago, virtual support and education groups sprung up to try to help these men learn to co-exist with their cancers. Patients and advocates helped start Active Surveillance Patients International and the Active Surveillance Virtual Support group on the AnCan platform, Prostate Cancer International, MaleCare, Prostate Cancer ABCs, and Prostate Cancer Support Canada.
I know many of the clinical leaders in urology, radiation oncology, medical oncology, and pathology.
Klotz and other doctors seem surprised and pleased that we patients run support meetings and educational sessions to help our compadres and their partners. We even have held debates on issues, such as whether transperineal or transrectal biopsies are better for patients and whether Gleason 6 is cancer at all.
The vision for AS 101 was of a series of programs featuring real patients and their partners/spouses meeting in 20- to 30-minute segments with the top experts in the field, from primary care doctors and urologists to radiation oncologists, genetic counselors, and medical oncologists.
I felt that webinars were becoming too much like academic lectures with overwhelming numbers of slides. I thought we could scale this down to the basics. Keep it simple--and factual--for those newbies and those in the gray zone and everyone else. I banned PowerPoint. It was going to be simple conversations with the mavens of AS.
I first lined up Dr. Stephen Spann, a leading family physician and dean of the University of Houston School of Medicine, and Klotz to appear on our initial programs: responding to rising Prostate-Specific Antigen (PSA) levels, the first urologist visit, and the Gleason 6 diagnosis. Jonathan Epstein, MD, the guru of Gleason scores, an internationally known pathologist at Johns Hopkins, will join us at a future session.
I recruited a couple, Nancy and Larry White, to be the partner-patient combination in the initial programs. Nancy has been a well-informed advocate for her husband Larry, a child psychiatrist, who has prostate cancer. They are a smart team, a model of self-advocacy.
The committee members and the Whites developed a list of questions that was transformed into a script, which we showed the doctors. The Whites and the doctors helped polish the list and reorder the questions to improve the flow and make it as real as possible.
We have three programs in the can and three more on the drawing board. We’re even talking about an AS 102 for patients with Gleason 3+4.
There is much to do to make Active Surveillance 101 the best possible resource, but we know already that we’ve built something valuable.
Howard Wolinsky has been a medical journalist for more than 50 years, mainly for the Chicago Sun-Times, and he writes the “A Patient’s Journey” blog for MedPateToday.com on his experience as a patient on active surveillance (AS) for low-risk prostate cancer.
He was twice nominated for the Pulitzer Prize for exposes of financial and ethical scandals at the American Medical Association. He has helped start two education and support groups for patients on AS. He is the editor of The Active Surveillor newsletter, co-founder of ASPI, an advisory board member of the organization AnCan, and a moderator of AnCan’s AS Prostate Cancer Group.
More meetings for Prostate Cancer Awareness Month
The Walnut Foundation Monthly Meeting in support of Prostate Cancer Awareness Month.
Topic:-Incontinence, Erectile Dysfunction & Prostate Cancer with Special Guest. Dr. Emmanuel Abara, Urologist.
This is a free webinar. You may submit your questions in advance to info@thewalnutfoundation.com
Prostate Cancer Support Canada meets virtually. Yanks are welcome.
The Prostate Cancer Support Canada is holding its 2022 Prostate Cancer Virtual Conference September 17-18 in honor of Awareness Month.
Day 1, The ‘New Normal’ for Support Groups, will focus on facilitation and communication skills for those in, or interested in, leadership roles in the prostate cancer support community.
Day 2, Prostate Cancer Realities will more broadly address issues of interest to our community including managing anxiety and stress throughout the cancer journey, genetics and prostate cancer, upcoming research, how to find trusted information about prostate cancer, and more.
Dr. Brian Goldman, best-selling author and host of White Coat, Black Art on CBC radio, will be speaking about The ‘New Normal’ for Support Groups.
Check for details in the conference program ‘flipbook’ with session + speaker details and registration link: https://bit.ly/2022PCVCprogram
Prostate Cancer Foundation is looking at physical and mental illness.
For Prostate Cancer Awareness Month, the Prostate Cancer Foundation, the 800-pound private prostate cancer researcher, is holding a webinar on “Physical and Mental Wellness in Prostate Cancer.”
Here are the details:
Join us for the first in a series of monthly webinars hosted by PCF President and CEO Dr. Charles J. Ryan.
During Prostate Cancer Awareness Month, PCF challenges everyone to Get Healthy. Dr. Ryan and guests will discuss key aspects of nutrition, exercise, and mental health in prostate cancer.
The event will be Sept. 20, 2022 04:30 PM in Pacific Time (US and Canada).
Sign up to join here.
Following each segment, there will be a live Q&A.
• Prostate 8: Simple lifestyle changes that work (Dr. Stacey Kenfield, UCSF)
Dr. Kenfield is an Associate Professor in the Department of Urology and is the Helen Diller Family Professor of Population Science for Urologic Cancer. She is an expert on lifestyle, exercise, nutrition, and their impact on prostate cancer. She'll discuss research showing how specific lifestyle factors improve outcomes after prostate cancer diagnosis, and practical ways to incorporate these changes into your life.
• Mental Health and Prostate Cancer (Dr. Andrew Roth, Memorial Sloan Kettering Cancer Center).
Dr. Roth is an Attending Psychiatrist and is board-certified in Psychiatry, Geriatric Psychiatry, and Psychosomatic Medicine. He is focused on caring for the mental health needs of patients with prostate cancer and other genitourinary diseases. He'll provide an overview of the challenges patients commonly face, as well as strategies and resources for coping and living well during treatment and survivorship.
Here’s hoping Dr. Roth will cover AS as well as advanced prostate cancer.
Please send any questions for the speakers in advance to: webinar@pcf.org