You've got questions about AS. These experts have answers.

Also, celebrate AS support trailblazer Thrainn Thorvaldsson

By Howard Wolinsky

A big change is coming to TheActiveSurveillor.com in November.

(Just in time for sweeps week and a campaign for paid subscriptions?)

I’ll still do my news reporting on Active Surveillance (AS) and lower-risk prostate cancer, and I’ll still offer my two cents on developments in the field.

Meanwhile, I have assembled an extraordinary panel of experts to answer your questions.

These top docs will respond to your questions about pathology, urology, radiology, and sex and surveillance.

Email mailto:pros8canswers@gmail.com Please keep the questions short and sweet. They should be of general interest. Sign with your real name, initials, or a wistful anonymous name, like “Lost in Flossmoor,” or “From a Desert Island.”

(We cannot offer medical advice. Go to your personal physicians for that.)

Questions will be answered once a month by these experts:

—”The Pathology Report.”Dr. Ming Zhou is pathologist-in-chief at Tufts Medical Center in Boston. He has served on the Cancer Committee of the College of American Pathologists and is the primary author of the genitourinary cancer protocols, the guidelines for practicing pathologists on diagnosis and reporting genitourinary cancers. He serves on the editorial board of several pathology journals, including Modern Pathology and Pathology International. He is the president of the Genitourinary Pathology Society (GUPS), an international urologic pathology organization.

—”Sex and Surveillance.” Dr. Anne Katz is the certified sexuality counselor and Clinical Nurse Specialist at.CancerCare Manitoba in Winnipeg, Canada. She is the immediate past editor of the Oncology Nursing Forum, the premier research journal of the Oncology Nursing Society. She was recently appointed as Associate Editor of CA: A Cancer Journal for Clinicians (American Cancer Society). She was inducted into the American Academy of Nursing in 2014. She is the author of 15 books for healthcare providers and healthcare consumers on the topics of illness and sexuality as well as cancer survivorship.

—”The Urology Report.” Dr. Michael Leapman is an Associate Professor of Urology; Clinical Program Leader, Prostate & Urologic Cancers Program, Yale Cancer Center; and Assistant Professor, Chronic Disease Epidemiology. His special interests include low-risk prostate cancer and Active Surveillance.

—”The Radiology Report.” Dr. Antonio Westphalen is Section Chief of abdominal imaging at the University of Washington and UW professor of radiology. Dr. Westphalen’s research interests are centered on the use of advanced imaging technologies to diagnose and treat patients with prostate cancer.

SEND YOUR QUESTIONS To: mailto:pros8canswers@gmail.com

Join ASPI in celebrating Thrainn Thorvaldsson

By Howard Wolinsky

Icelandic support group trailblazer Thrainn Thorvaldsson contacted me in 2017 after I blasted urologists for not listening to patients at the hugest urologic oncology meeting where I was the first patient to be an invited speaker.

You can read more about my rant heard ‘round the urology world in MedPage: https://www.medpagetoday.com/hematologyoncology/prostatecancer/63251

Thrainn, who started the world’s first support group for Active Surveillance, heard about me at the Prostate Cancer Research Institute meeting in LA from other patients. I was the prostate patient who stood up to the Doctor Man (or Woman) and told them they needed to start listening to patients.

Doesn’t seem revolutionary. Not quite up there with Martin Luther’s “Ninety-five Theses, or Disputation on the Power and Efficacy of Indulgences.”

But Thrainn and I chatted and cooked up an idea of a support group aimed at us isolated AS patients, who didn’t feel welcome at support groups aimed at support groups for the full spectrum of prostate cancer patients, including those with serious quality of life issues and severe reactions to cancer treatments.

We realized that AS patients were a different breed of cancer patient, who had not been treated.

Thrainn recruited two other AS patients at the PCRI meeting later that year, Mark Lichty and Gene Slattery. We formed ASPI (Active Surveillance Patients International).

The group has helped thousands, if not tens of thousands with educational webinars and support. We have had participants in our sessions from throughout North America to UK, Belgium, and Russia, from Brazil to Pakistan, Singapore, and Australia. More than 30 countries all told.

Please join us Saturday, October 28 at 12 pm-1:30 p.m. ET, to honor trailblazer and founding ASPI board member Thrainn Thorvaldsson recepient of the first Patient Advocacy Award. We will be celebrating Thrainn in his support for men on Active Surveillance. He was ahead of his time in creating support and education groups for men on AS in his native Iceland and internationally through ASPI. Several guest speakers will speak about their relationships with Thrainn.

Following the ceremony, we will open the floor for discussion from the audience.

ASPI’s prior award programs have included The Chodak award, named for ASPI’s first medical advisor and AS pioneer, the late Dr. Gerald Chodak, honoring Dr. Laurence Klotz, the father of AS; 2023 recipient Peter Albertson, who led some of the earliest research on AS, and The ASPI AS Advocacy Award to the MUSIC (Michigan Urological Surgery Improvement Collaborative

Register Here https://zoom.us/meeting/register/tJMrcuuqrTgiH9WrrznAmLJvh-xOcZT6Fg2q

ASPI lifestyle program on lifestyle has been posted

During September’s Prostate Cancer Awareness Month, Active Surveillance Patients International (ASPI) sponsored a webinar, “Applied Research and Lifestyles and Low-Risk Prostate Cancer.”

Topics covered included: Role of Exercise for Deterring Prostate Cancer Progression/Death, Role of Diet for Men Living with Prostate Cancer/AS, Lifestyle Scores & Prostate Cancer Progression, Practical Advice on Diet for Men living with Prostate Cancer and cancer causes such as carcinogens, diet and mental health mindfulness for cancer.

The program featured researchers June Chan and Stacey Kenfield and Greta Macaire, all from the University of California, San Francisco.

To view, go to https://aspatients.org/meeting/lifestyles-and-low-risk-prostate-cancer/