(Editor’s note: Richard O. Maye, a former hospital administrator, is one of the more proactive Active Surveillance (AS) patients I know. Richard has favorable intermediate-risk Gleason 3+4 prostate cancer and is among the first AS patients to undergo a PSMA PET scan. And Medicare covered it.
(Some experts see this test as a possible future tool for patients with low-risk Gleason 6 prostate lesions. But it may be a while: Australian expert Jeremy Grummet shared his POV last fall with TheActiveSurveillor.com: https://bit.ly/3m7FqRV)
By Richard Maye, PCa Patient
I received my diagnosis of prostate cancer in November 2018 as a result of a 12-core transrectal biopsy. Three cores were scored Gleason 6 and one core was scored a 3+4 Gleason 7, with the 4 being less than 5% involved. The Urologist at Ohio State University recommended a genomic test to which I agreed, and the results were very favorable. After a discussion of available treatments and the related side effects, the urologist suggested Active Surveillance as a means to monitor the cancer with a follow-up confirmatory biopsy in one year. Given the results of the biopsy being confirmed by receiving a second opinion and the genomic test results, I was not convinced that another biopsy was needed in a year and certainly not interested in treatment.
In June 2019, during a meeting to discuss the results of a PSA blood test, the urologist took a noticeably harder approach in comparison to that in 2018 by pushing an MRI. I agreed to have the MRI primarily to use as another indicator that the cancer was not an immediate threat. That is where my experience with prostate cancer changed. The report indicated a suspicion that the lesion extended beyond the prostate gland wall and a PIRADS 5 score. However, other members of the medical staff at OSU disagreed. I did not know in 2019, that it was possible to obtain a second opinion on an MRI image. From attending the AnCan AS and Low & Intermediate-Risk prostate cancer support groups, I discovered a second opinion was possible.
Thanks to [AnCan moderator and editor of The Active Surveillor] Howard Wolinsky, who provided the source for this second opinion, I was informed that the lesion had not spread outside the wall, and consequently, I was now more focused on my next move.
In 2022, and at my current age of 75, I was not interested in having another biopsy only because it was not going to tell me what I am most interested in knowing. My interest is this; what is the likelihood that the cancer will spread (is it in the gland wall) or has spread outside the wall?). Again thanks to Howard, I sought out a urology group in Central Ohio that offers the micro-ultrasound procedure that provides a much higher and clearer contrast than that of an MRI. Meeting with the physician, it was apparent that he wanted to do an Exact Vu [micro-ultrasound] fusion biopsy and then perhaps HIFU focal therapy or surgery. Neither of which I was going to have performed.
(Richard O. Maye)
Back to OSU and a discussion with my urologist, given the “discordant” findings between the original biopsy, genomic test, MRI report, and a fluctuating PSA, the urologist understood why my focus was on the spread of cancer and not the Gleason or Grade Group scoring. He agreed with my request for a PSMA PET scan.
PSMA stands for Prostate-Specific Membrane Antigen, which research shows attaches to the cancer cell and thereby lights up when a contrasting radioactive agent touches it. FDA approved PSMA PET scans in December 2020, which at that time was limited in use to advanced metastatic prostate cancer. It is now offered at more locations and used, at least in my case, for men with diagnostic findings and medical staff that are not in agreement.
The Scan Process:
--Fasting is not required
--A nuclear medicine technician injects you with a saline solution first (which makes your arm feel wet and cool)
--Followed by an injection of a radioactive solution (Gallium – 68 Gozetotide). You sit in a chair and wait 50-55 minutes for the solution to move through the bloodstream
--You move to the scanning room, remain in your street clothes but take everything out of your pockets
--You are covered with a blanket, and you pull your pants down to your knees
--The scanner is a large doughnut open at both ends
--The technician moves the table with your head entering the scanner first. You remain in that position for about two or three minutes
--The table moves your body through the scanner with head, neck, abdomen, and pelvic region in that order and then you go back through the scanner in reverse order.
--The scan last 20 minutes
--It’s much quieter than an MRI scan
I did not have any adverse side effects to the injected solution
A nuclear medicine radiologist read the image and posted the results on the EHR (Electronic Health Record) patient portal the same day.
(Imaging from National Cancer Institute)
Medicare approved the procedure.
Of course, it is generally normal to have a level of anxiety when a process such as a scan is involved that you have never experienced. For me, though, the goal of having an outcome that can settle this “discordant” findings issue was uppermost in my mind. The report indicates “mild PSMA expression, no extraprostatic extension or adjacent tissue involvement”; no other foci of abnormal uptake to suggest metastatic disease.” I have yet to discuss the report with my urologist, but there is a peace of mind from pursuing this approach as it appears to address my goal regarding metastatic spread.
From my conversations with the nuclear medicine technician, I believe that the PSMA PET scan will be used in the future for men on AS in the form of a staging diagnostic tool for better shared decision-making. PSMA radiogland therapy (Lutetium) is showing significant beneficial results for men with advanced metastatic disease, according to the technician.
If you would like to ask questions about my experience and case history, please contact me in the comments box and I will respond.
The Prostate Cancer Foundation is holding a webinar on PSMA PET on March 14, 2023 at 4:30 PM Pacific Time. to register:
PSMA PET is a newer, highly sensitive imaging scan that can detect prostate cancer metastases much earlier, when they are much smaller.
How does it work? Do I need one? What do the results mean for me? What happens during the scan?
PCF President and CEO Dr. Charles J. Ryan, MD, tackles these topics from the perspectives of a doctor, patient, and caregiver.
The program features Phillip J. Koo, MD, Division Chief of Diagnostic Imaging at the Banner MD Anderson Cancer Center in Arizona. He is a diplomate of both the American Board of Radiology and American Board of Nuclear Medicine and is the Chair of the Quality and Evidence Committee for the Society of Nuclear Medicine and Molecular Imaging.
Send any questions in advance to: webinar@pcf.org. The webinar will be recorded for later viewing.
About half of European prostate cancer patients left in dark on treatment choice
By Howard Wolinsky
Some European countries have been leading the way on the use of transperineal biopsies and mpMRI scanning.
But that doesn’t mean Europe is the end-all and be-all for prostate cancer care.
Europa Uomo’s second EUPROMS quality of life study found only about half of men with prostate cancer felt that they had had opportunity to thoroughly weigh treatment options with their doctor.
“That needs improvement,” Carl told 300 urologists in a webinar on patient-centered care organized by the European School of Urology. “We know that patients who are involved in shared decision-making are much less critical about the outcome, even if that outcome is not excellent. Even if there is a relapse they will take it much better if they were involved in decision making.”
More details will be released this month at European Association of Urologists.
Europa Uomo also reported on our survey of 450 men on issues confronting active surveillors, such as whether Gleason 6 lesions should be renamed noncancers: https://www.europa-uomo.org/news/should-low-grade-prostate-cancer-be-reclassified/
AS 101
ASPI at its September 24, 2022 meeting premiered the first of a new video series named "Active Surveillance 101." If you missed the first video,click here to watch part 1.
On October 15th the second video in the series was released. Part 2 features Dr. Laurence Klotz, the “father” of Active Surveillance.Click here to watch part 2.
On January 28th the third in the AS 101 series was released. In this session, Dr. Laurence Klotz, “the father of AS,” discusses the biopsy and who qualifies for AS with Larry White, a patient, and his wife Nancy. Click here to watch part 3.
Like 101-level courses in colleges, AS 101 is aimed at teaching the basics. In this case, it's the basics of active surveillance, close monitoring of low-to favorable intermediate-risk prostate cancer.
The program features conversations between actual patients and their partners/spouses and leading experts. The goal of this series is to reach all AS candidates, including those who have not yet been diagnosed with prostate cancer but have rising PSAs (prostate-specific antigen) blood levels and offer them an introduction to AS and help them formulate questions when they go to their family doctors, urologists, or oncologists.
AS 101 is sponsored by the Active Surveillance Coalition, which includes Active Surveillance Patients International, the AnCan Virtual Support Group for Active Surveillance, Prostate Cancer Support Canada, Prostate Cancer Research Institute, and TheActiveSurveillor.com newsletter. We encourage you to share this series with anyone who you know who is dealing with this issue, including your family physician.
Other AS 101 programs will be available soon.
PROMISE Registry
The PROMISE registry is an observational study intended to bring a personalized approach to prostate cancer treatments and therapies. PROMISE research will examine how particular genetic profiles can:
Influence the susceptibility of men to prostate cancer
Impact the effectiveness of existing treatments
Improve guidance for different and/or new treatment options
Suggest precise areas to explore for new discoveries
According to Heather Cheng, MD, PhD, University of Washington, and Channing Paller, MD, Johns Hopkins University, lead investigators of PROMISE, prostate cancer may be written in some men’s genes, but so are instructions for discovering new treatments and understanding family risk.
Seeking Your Help
PROMISE researchers are looking to identify prostate cancer patients ages 18+ with specific inherited genetic factors using a saliva DNA test. Participation is simple and there is no cost. Patients remain under the care of their current doctor. No travel is required. Patients don’t need to leave home.
Benefits of Joining the PROMISE Registry
Prostate cancer patients who join PROMISE will:
Learn valuable information about their genetic profile and discover if they have a critical gene mutation that may impact their personalized care plan.
Receive the most current information about new research, clinical trial opportunities, and treatments approved by the FDA.
Help family members understand their own risk of prostate cancer and risk for future generations.
Make an essential contribution to advancing research and understanding of prostate cancer by providing essential genetic information and long-term outcomes that are not available anywhere else.
To learn more, visit ProstateCancerPromise.org
Thanks, Steven. More to come soon. Howard
For Richard it sounds like this test was necessary since there was debate about whether his cancer had gotten out of the prostate or not. Glad to hear it worked for him.
I wonder if this test should also be used for any patient who has been biopsied and the pathology report shows evidence of perineurial invasion (PNI). PNI is touted as being a path for cancer to spread outside the prostate along nerves.
I know PSMA PET is covered by Medicare. If you are not yet on Medicare, my doctor said the out of pocket cost would be around $10K. I just checked all my pockets. I only found $22.18. Guess I'll have to wait a few more years to get to 65!