Idaho reader: Is good news too good to believe? Urology Report columnist Dr. Leapman responds
(Send your questions about AS and urology, radiology, pathology, sexual health, and lifestyle via email to mailto:pros8canswers@gmail.com
(Keep the questions short and sweet. They should be of general interest. Sign with your real name, or just initials, tell me where you live, how long you‘ve been on AS, how it’s going for you. Share a whimsical signature if you’re so inclined. Like ‘Butch from Idaho” or “Lost in Flossmoor.’)
Question: I’ve been on Active Surveillance for 5 1/2 years. My first biopsy showed cancer in 2 of 12 cores (2% and 20%). I’ve had three MRIs, the first two were scored PIRAD 2 but the last MRI had two areas that were graded PIRAD 4, 60% chance of significant cancer.
So I had another biopsy with 20 cores taken, 16 cores taken systematically and 4 more taken in the two areas of concern. The result was no cancer was found. I will stay on AS but how unusual is it that NO cancer was found after the PIRAD 4 scores?
Dan in Idaho
P.S. I changed to a more vegetarian diet four years ago, especially avoiding foods high in Omega 6.
Dr. Michael Leapman:
Hi Dan. Great to hear you are doing well on active surveillance with no evidence of progression. You have had a very complete evaluation, and it’s reassuring that no more aggressive cancer has been found. We do see negative biopsies in PIRADS 4 lesions about 30-50% of the time. This could be because of a “false positive” read – meaning that there is genuinely no cancer in that area. Alternatively, sometimes there is an issue of accurately targeting that area during a biopsy (i.e. it was “missed”) which can happen due to the small size of the lesions. Either way, it is not out of the ordinary that the biopsy was negative and I would just continue keeping an eye on it with PSA levels and periodic MRIs. If there are major changes I would consider another biopsy.
Michael S. Leapman, MD, MHS. is an associate professor of urology and clinical program leader, the Prostate & Urologic Cancers Program, Yale Cancer Center, New Haven. He has a special interest in low-risk prostate cancer, Active Surveillance, nerve-sparing robotic prostatectomy, focal therapy, high-risk disease, molecular imaging, and PSMA PET scans. Send Dr. Leapman questions on Active Surveillance at mailto:pros8canswers@gmail.com
Sign up early: ZERO support group on AS in March
By Howard Wolinsky
For the past three years, I have run a special Active Surveillance support group for ZERO. Last year, our virtual support meeting drew 60 patients to talk about AS. By far, it was the biggest session of any at the annual ZERO Summit.
I’m hoping we can beat that record at 11 a.m. Eastern on March 12, 2024.
I’ve set up the meeting and figured why not put out the word early.
It also will help in planning. If we get over 100 sign-ups, I’ll have to convert to a webinar so no one gets turned away.
So sign up now and join us at 11 a.m. Eastern on Tuesday, March 12, 2024.
Register in advance for this meeting:
https://us02web.zoom.us/meeting/register/tZUsfuqgrjIoG9AWf7voMhzT_UjdqbQQbQPA
Reminder: Survey on how prostate cancer impacts partners
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, a European advocacy organization for men with prostate cancer and their partners, 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
A word from a reader
“Howard Wolinsky is a legend. He brings the active surveillance experience to life through his unique and entertaining voice.
“Every active surveillance patient should read The Active Surveillor to help further their research and improve their quality of life.”—Alex Scholz, CEO, Prostate Cancer Research Institute.