'Mindful surveillance' plan helps Randy Apsel get past anxious response to prostatitis
His anxiety levels rose with his PSA levels.
(Editor’s note: Randy Apsel is a man with a prostate cancer plan. He calls it Mindful Surveillance. He plotted out various scenarios to consider if his situation changes.
Randy recently was thrown for a loop when his PSA shot up. His anxiety levels rose with his PSA levels.
But Randy hung in there. Ironically, he got a prostate infection from a biopsy that resulted in the rise in his PSA, which nearly sent him scurrying to the AS (active surveillance) exits.
Randy gives me some credit for his remaining on AS. But he did it all himself. He sent me the note in “gratitude and tremendous relief” in hopes of helping others. Happy to share.)
By Randy Apsel
In February 2022, The Active Surveillor editor Howard Wolinsky was instrumental, encouraging, and collaborating in getting my Mindful Surveillance plan published in The Active Surveillor for how to manage low-grade prostate cancer with minimal anxiety optimally.
Since then, I had a very surprising 39% increase in PSA in my semi-annual re-test in May and continuing to a 68% increase by another PSA re-test six weeks later.
In addition to the exponentially increasing PSA, my BPH symptoms had significantly worsened and my gastro system had become unstable.
This was very concerning suggesting a possible exponential growth of my prostate cancer and possible spread to other organs since Gleason 3+3 prostate cancer is typically extremely slow growing or even non-growing with many urologists considering it a pre-cancer or a dysplasia (I had previously named it “BPD” for benign prostatic dysplasia, one step up from “BPH” for benign prostatic hyperplasia).
My original Mindful Surveillance plan, which was approved by my urologist, suggested that I had “progressed” to Scenario 3a, calling for another MRI and biopsy.
My urologist suggested we do another Artemis fusion biopsy to investigate further and then proceed to the next step(s) depending on the biopsy results. I was skeptical because of the rare exponential growth of low-grade prostate cancer.
I proposed to my urologist that we first rule out the scenario of an exponentially growing prostate infection (“prostatitis”), which could have occurred during my invasive transrectal biopsy (not uncommon) on Jan. 4th, causing an increasingly inflamed prostate and even an unstable gastro system if such an infection had spread to other organs.
I had a prostate infection 11 years ago with exponentially growing PSA and BPH symptoms, after which antibiotics reversed all the elevated symptoms with my PSA eventually returning to pre-infection levels. Since I didn’t have prostate cancer back then, I went on finasteride to shrink the prostate by 30% or more and am still on that medication.
My urologist agreed and I went on a 30-day regimen of antibiotics to investigate my prostatitis hypothesis. Sure enough, my symptoms started to subside within about a week and by 30 days, my elevated urinary symptoms had reverted to pre-biopsy levels.
And my gastro system was completely back to normal, despite antibiotics typically destroying the good bacteria and messing up the gastro system rather than stabilizing it (especially since I avoided all probiotics rather than consuming them two or three hours on either side of the antibiotics).
I immediately got a PSA re-test after the antibiotics and was totally relieved and thrilled to confirm that my PSA level had dropped halfway back to pre-biopsy levels. I am currently on an additional 30-day regimen of antibiotics to eradicate any residual prostate infection.
So the prostatitis scenario was confirmed, likely and ironically caused by the invasive biopsy testing.
What an incredible anxiety relief and rollercoaster ride after almost falling into the medical system trap of additional invasive testing, treatment or prostatectomy, and negative or morbid side effects.
My father was diagnosed with low-grade prostate cancer 18 years ago after an invasive random prostate biopsy and his urologist decided to treat it with Lupron injections, which caused serious side effects that indirectly led to his death from pneumonia in the hospital about two years later.
I feel that I have a second chance at life and am continuing to live with an even more positive mindset.
I have updated my Mindful Surveillance plan accordingly to include taking antibiotics for 30 days following any invasive biopsy to avert the common infection scenario from an invasive transrectal biopsy. I also included a step for ruling out prostatitis after an exponentially increasing PSA level. Attached is my updated Mindful Surveillance plan in both PowerPoint and PDF formats. As I mentioned in the overview section, this is my personal Mindful Surveillance plan to manage or eliminate anxieties from active surveillance of low-grade prostate cancer. While the exact plan may not apply, I suspect at least some or most aspects of it would apply for men with low-grade prostate cancer.
My very best wishes and best regards,
~Randy
Randy’s plan:
Debate on biopsies
I’m moderating this event. So I expect you’ll attend. K? Sparks will fly as two titans debate transperineal vs. transrectal biopsies.
Register. If you can’t make it, you’ll get a video link.
Please join AnCan’s Virtual Support Group for Patients on Active Surveillance for a program, “Prostate Cancer Biopsies...The Great Debate,” on whether transrectal biopsies or transperineal biopsies are better for patients.
The program will be 8-9:30 p.m. Eastern on August 29. Register here: https://register.gotowebinar.com/register/1375984251183869452
Deborah Kaye, MD, Assistant Professor Duke UniversityDivision of Urology and Duke Clinical Research Institute Margolis Policy Center, will argue for transrectal biopsies.
Arvin George, MD, a urologic surgeon specializing in the diagnosis and management of genitourinary cancers at the University of Michigan Health, will argue for transperineal procedures.
Co-sponsors include ASPI, Prostate Cancer Support Canada, the Prostate Forum of Orange County, and TheActiveSurveillor.com.
Please submit questions in advance to moderator Joe Gallo at joeg@ancan.org
HOW AND WHEN SHOULD I DO A GENETICS TEST?
AUGUST ZOOM MEETING
August 27, 2022
REGISTER
HOW AND WHEN SHOULD I DO A GENETICS TEST?
Men, loved ones, and families can gain valuable facts from a cancer genetic test. While the use of genetics testing for cancers is still growing, the existing state of the art for prostate and related cancers is a powerful tool for identifying men and persons at risk. This 60-minute expert presentation will feature expert Geneticist Robert Finch, MS, a Certified Genetic Counselor and Medical Oncologist Michael Glode, MD. You will be reacquainted with prostate cancer screening biomarkers such as the PSA test and a variety of genomic tests, receive a thorough explanation of how and when to get a cancer genetics test along with genomics tests, and finally a moment for you the patient or family to ask questions.
As ASPI does not provide medical advice, this program will educate you and your family about medical details of a family history from a genetics test, which genetics tests are not useful for medical care, the pertinent genetic relationships between breast, ovarian, pancreatic and prostate cancers and how any of these genes may affect your health. and Getting more educated not only better serves the prostate cancer patient, but also the family.
Big doings in Canada
Note from Richelle Green :
Wondering if you wouldn’t mind sharing some info on our 2022 Prostate Cancer Virtual Conference that’s coming up on September 17th and 18th in honor of Awareness Month.
It will be taking place over Saturday, September 17th and Sunday, September 18th.
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.
We are especially excited to announce that Dr. Brian Goldman, best-selling author and host of White Coat, Black Art on CBC radio, has agreed to be one of our speakers on Day 1: The ‘New Normal’ for Support Groups. He will be speaking on The Power of Teamwork: How We Can All Work Better Together – something that will be crucial as we strengthen our network of support group leaders across the country (and even into the States with you guys!).
Here are a few ways you can share the Conference depending on what works best for you and/or your organization:
Conference program ‘flipbook’ with session + speaker details and registration link: https://bit.ly/2022PCVCprogram
*If you’re not sure what would be best to share, I’d suggest this as it has the most complete info
Conference registration page: https://bit.ly/2022PCVC
Facebook event: https://fb.me/e/239vDHm7x
Conference Poster (attached)
Sharing our posts on Facebook (facebook.com/prostatecancerbc), Twitter (@ProstateCancrBC), or Instagram (@ProstateCancerBC)
Another neat resource you may wish to share is our Awareness website, https://bit.ly/prostatecanceraware2022, which links to:
Conference program and registration
Light Up in Blue, our national awareness campaign (also directly available at https://bit.ly/2022lightupinblue)
Posts you can share to raise awareness
Profile picture frames for Twitter and Facebook
We have an incredible lineup of speakers joining us from across Canada and we want to ensure that as many people as possible are able to take advantage of the information and support that will be shared at this free Conference.
Prostate Cancer Foundation 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 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
Randy notes: In case you talk with a substack.com IT person about this, the exact issue is the “Read now” button is not enabled in the emailed article, but is active when you open the article from the title link.