New survey focuses on how the prostate cancer experience impacts partners--ask your partner to respond

Please answer my survey on AS after 75

By Howard Wolinsky

Prostate cancer is a couple’s disease.

Whatever your diagnosis—from very low-risk to very high-risk—your spouse, partner, significant other, etc. is impacted. In the case of Active Surveillance, your partner’s perspective can make or break the decision to be surveilled vs. treated.

EU-PROPER partners’ study

Antwerp-based Europa Uoma (Italian for “Europe man”), a European advocacy organization for men with prostate cancer, representing 26 national patients’ groups, has done excellent research surveying men with prostate cancer. Now they are conducting an anonymous survey in Europe and beyond to learn about the experiences of partners of men with prostate cancer and the physical and psychological burdens the disease imposes on them.

Europa Uomo Chairman Guenther Carl said that the study builds on the knowledge gained from previous Europa Uomo studies about patients’ quality of life after treatment (the EUPROMS studies).

“Our EUPROMS surveys have gone some way to identify the burden of prostate cancer on the daily lives of affected men,” he said. “But we also know from our own experience that the effect on partners and caregivers can be considerable. If we can find out what would really help partners, it could have a significant impact on the type of support provided after diagnosis.”

He said the survey will help define unmet needs and provide an agenda for action.

The study, named EU-PROPER (Europa Uomo Prostate cancer Partners in Europe Research), is available online in 17 languages. Pick your favorite.

Go to euproper.org to complete the survey

Surveillance: Should I stay or should I go?

By Howard Wolinsky

I am weighing whether I should stop my Active Surveillance program and would like your opinion. I am 76 and and nothing is going on—my PSA is stable and this freakin’ cancer was only seen once back in 2010.

As the English punk rock band the Clash asked in their ‘80s album Combat Rock: "Should I Stay or Should I Go"

Should I stay, or should I go now?
Should I stay, or should I go now?
If I go, there will be trouble
And if I stay, it will be double
So come on and let me know

I hope you can take five minutes and answer my survey. Five minutes tops.

I’d value your opinion. Go to https://forms.gle/oFvfH3rPdgJmEbiQ7

Here’s a bonus for answering. Thanks.

You’ve got questions? They’ve got answers.

By Howard Wolinsky

Starting in November, a panel of experts will answer your questions about Active Surveillance and lower-risk prostate cancer right here in TheActiveSurveillor.com.

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

Please send questions via email to mailto:pros8canswers@gmail.com

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 “Stranded on a Desert Island.”

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

Join ASPI in celebrating AS support pioneer Thrainn Thorvaldsson

By Howard Wolinsky

Icelandic support group trailblazer Thrainn Thorvaldson, who started the world’s first support group for Active Surveillance, is being honored with ASPI’s for Patient Advocacy Award Saturday, October 28 at 12 pm-1:30 p.m. ET.

Thrainn changed my life when he heard about how I ranted about bad treatment of AS patients at a major medical meeting, and we decided to work on reforming things. We plus Mark Lichty and Gene Slattery started ASPI in 2017.

Following the Active Surveillance Patients International ceremony, they will open the floor for discussion from the audience.

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

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 in 2022 and Dr. Peter Albertson, who led some of the earliest research on AS, in 2023. The ASPI AS Advocacy Award went to the MUSIC (Michigan Urological Surgery Improvement Collaborative this year.

Researcher talking to Orange County prostate group on AI

By Howard Wolinsky

Dr. Daniel Spratt, chair of radiation oncology at University Hospitals Seidman Cancer Center and a professor at Case Western Reserve University School of Medicine in Cleveland, Ohio, one of the leaders in AI biomarkers and prostate cancer.

He says: “The real immediate use is that this (AI) biomarker can be an adjunct, or it can be something to assist in making the shared decision making with patients [with prostate cancer].” He is using AI in deciding whether to use Androgen Deprivation Therapy (ADT) in some patients.

The next step with this technology is helping men make decisions on AS.

Spratt will be speaking on AI in prostate cancer treatment at 8 p.m. Eastern/5 p.m. Pacific on Thursday, Oct. 26, on Zoom to the Prostate Forum of Orange County: https://us02web.zoom.us/j/85477749453