Joel Axler's amazing genetic journey with BRCA 2 mutation--from Active Surveillance to radical surgery

(Editor’s note: Joel Axler with his favorable intermediate-risk Gleason 3+4 looked like a great candidate for Active Surveillance (AS) when he joined our young virtual support group for AS at AnCan in 2021. But he had one nagging issue. He was diagnosed with a BRCA 2 mutation. Joel was the first such patient with genetic issues and PCa that we had encountered. We had no idea Joel would end up with a Gleason 9—and a radical prostatectomy.

(BRCA—is short for breast cancer, and this mutation is often linked with breast cancer. But it can be associated with other cancers, including prostate cancer.

(In Joel’s family, the BRCA mutation came from his father’s maternal side. It affected his father’s mother mother, Joel’s half-brother, his sister, an aunt and her daughter. A couple family members had been diagnosed young with breast or ovarian cancer.

(His sister did not have cancer but underwent a double mastectomy and a hysterectomy. Hie paternal aunt and cousin both had cancer. His aunt had ovarian and a cousin had breast cancer. There was no prostate cancer in the family. His aunt recently told hi, that her mother, his grandmother, used to joke, ‘We all get cancer in this family but don't die from it.’ My grandmother had breast cancer as a younger woman but lived well into her 80’s.’

(The BRCA 2 mutation was identified in Joel’s family 15 years ago. He didn’t think much about BRCA 2 because he thought the mutation mainly affected women. When his blood panel came back with a PSA of 4.7, the doctor thought I should get tested, too.

(

(Outdoorsman Joe Axler on the trail.)

He wrote an essay for The Active Suveillor about his genetic journeyl in 2022. Below is an update.

(This is why we need to be treated to rule in or out mutations like BRCA 2 that can impact us and our closest family members.

Cases like Joel’s are why Active Surveillance Patients International is holding a webinar on why all men with prostate cancer should undergo germline testing on whether genes they have inherited from their parents and may have spread to their children may be linked to cancer or other diseases.

ASPI has assembled panel of genetics experts to address the topic. The session will run from noon to 1:30 pm Eastern time on Saturday, July 26.

Please register for the meeting here.

There will be a Question-and-Answer session following remarks by the panel. Please send questions in advance to: contactus@aspatients.org

Free germline spit tests are available from the Promise study. Get more information here: https://www.prostatecancerpromise.org/

Please respond to my confidential survey on genetic testing and PCa. I will present the findings in this newslatter. Click here: https://forms.gle/Uv9d5gaZYHadZ5Qh9

—Howard Wolinsky)

(Joel Axler’s BRCA story.)

My genetic journey: an update

By Joel Axler

I chose surgery to treat my prostate cancer over three years ago.

Coming to that decision was agonizing. At the time, my cancer was rated Gleason 7 - intermediate favorable risk, but I had a mutation of the BRCA-2 gene.

It’s not uncommon for someone with Gleason 7 PCa to engage in Active Surveillance or, perhaps, focal therapy.

My urologist outlined the continuum of treatments but offered no real recommendation. The decision was mine.

There didn’t seem to be much information guiding people like me. I was in my early 50s, had detected the disease early, and was fit and otherwise healthy.

I had learned that those diagnosed with later stage prostate cancer and the BRCA-2 mutation often faced more aggressive disease and poorer outcomes.

I wanted to know what the course of my disease might be so that I could choose how best to address it. My overarching goal was to avoid the undesirable consequences of treatment as long as possible without risking spread of the cancer outside of the prostate.

Consults with a couple of leading researchers in the field of prostate cancer and genetics led me to the conclusion that I would need definitive treatment, likely sooner than later. There would be no way to know for certain how quickly my cancer would progress, but the budding evidence was that it would be quicker than for those without a genetic component. Within a few months, I was scheduled for a prostatectomy.

Now, I made the treatment decision based on my knowledge of a Gleason 7, Intermediate Favorable tumor. My post-surgical pathology, though, identified a previously unseen and undiagnosed Gleason 9 tumor.

There was an invasion to my left seminal vesicle and a likely positive margin. The cancer was already leaving the prostate. I struggled to understand how this was missed during the diagnostic processes. I still struggle with that.

More importantly, fear set in. What do we do now? My surgeon and others I consulted with assured me that regular monitoring of PSA with quick action following any significant rise was still the appropriate plan.

I actively worked on my recovery from surgery. I started walking immediately, short distances at first then steadily increasing to miles. I tried jogging early and desperately wanted to get back to running on the trails near my home.

Within a month, I was running again and even started a little mountain biking. Three and half months after surgery, I completed a 100-mile backpack over six days in the Sierras.

I wanted to get back to my life before being diagnosed. I would learn, though, that you don’t just go back. Things have changed, physically, mentally, and emotionally.

I’m not a victim. I don’t consider myself a “survivor”. This is all now just part of my life script.

Physically, I’ve been able to do most of the things I was doing before treatment. I’m still active but find my energy level has changed a bit. It’s not clear if it’s related to my medical journey or just aging.

I tend to focus more on strength training than aerobic activity. Somehow feeling stronger makes me feel better.

Surgery has had clear consequences, though. As my surgeon said before the prostatectomy, it’s not going to make erectile functioning better. He was right about that and I now take a prescription to help with performance.

I’ve never had difficulty with incontinence, though I understand it is a common consequence for some.

I did have a chronic infection on and off for over a year after surgery at one of the incision sites, but that has resolved. I’ve had to go into the lab for a blood sample every three months for the first two years, and now every four months. My PSA has consistently been found to be below the sensitivity of the test, non-detectable. That’s expected for someone without a prostate but on my most recent test, my PSA was just above the sensitivity level of the test but still very low. I’ll be watching that closely.

Prostate cancer and, more importantly, my general health is more on my mind than ever before. I’m frequently thinking about prostate cancer, reading research on BRCA-2, looking out for breakthrough medical treatments, or planning for my next appointment. I often look for new information and think about whether there’s anything else I should be doing.

I think about my two sons, in their mid-twenties, and how to help them with decisions around testing for BRCA-2 and planning for prostate cancer screening. I think about my lifespan and whether my prostate cancer journey should impact practical decisions around planning for potential future medical care, timing of retirement, and financial preparedness for me and my wife.

I usually don’t go more than a week, but often more frequently, thinking about how prostate cancer and the BRCA-2 mutation impact my life.

Finally, while many aspects of this journey have been incredibly stressful, the broad emotional toll has been mild. There have been occasional intense moments of fear and of sadness but much more common is frequent occurrence of worry, particularly as a PSA test nears.

Mild anxiety can also arise quickly when I start thinking about the future and my potential need for additional treatment. Though a bit cliche, this experience has also led me to grapple with what is important and to look at life with much more gratitude.

I try to remember to be present and to appreciate those moments with family, playing with the dog, or hiking in the forest. It’s often a challenge to remember to be present in the moment, to appreciate that which makes me feel full, but in some ways I feel I wouldn’t be experiencing the richness of life without having gone through this process. And for that, I’m thankful.

Joel lives in Flagstaff, Arizona with his wife, Randi, and dog, Blue. You can often find them together on the trails and in the forests near their home. Recently, Joel has been trying to perfect the art of pulling the perfect espresso shot. Once appropriately caffeinated, he works as a school psychologist for the local school district. Joel's greatest joy is watching his two young adult son's pursue their dreams.

Also, please can you fill in my survey on prostate biopsies?

—Please answer this questionnaire on transperineal biopsies vs. transrectal biopsies: https://forms.gle/GShpHwegEPtAVgTs9 I have a relevant story coming, and you can take a few minutes and help if you haven’t already. One more and I’ll have 100 respondents.—Howard Wolinsky.

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Active Surveillance Patients International has presented Dr. Matthew Cooperberg, of UCSF, with its 2025 Special Patient Advocacy Award.

Dr. Coops has stood up for AS in his research but also in overturning a policy of NCCN to try to “demote” AS. Read more here: https://aspatients.org/wp-content/uploads/2025/06/Dr.-Cooperberg-Press-Release.docx.pdf

He gave a fantastic, don’t-miss acceptance speech on “Active Surveillance: Past, Present, and Future”: https://aspatients.org/meeting/active-surveillance-past-present-and-future/

He presents a journey through Active Surveillance for prostate cancer—starting with its earliest days in the 1990s, through the ups and downs of PSA screening and treatment trends, and into today’s era of MRI, genomic tests, and AI-guided risk assessment.

You’ll hear how landmark trials like PIVOT and ProtecT proved that careful monitoring can spare many men the side effects of surgery or radiation, and how ongoing research is refining who needs a biopsy, when to intervene—and even whether we should rethink calling low-grade lesions “cancer” at all.

Dr. Cooperberg is a Professor of Urology and Epidemiology at UCSF, where he directs the Active Surveillance Program. A renowned clinician-researcher, he helped pioneer long-term surveillance cohorts at UCSF, Johns Hopkins, and Toronto, and co-leads the Canary Prostate Consortium’s efforts in risk stratification. His work—spanning large community registries, landmark clinical trials, and innovative biomarker studies—has reshaped guidelines worldwide and improved quality of life for countless men with prostate cancer. In recognition of his advocacy for patient-centered care and evidence-driven policy,

Cracking the Code on Pathology Reports: Helping Patients Navigate Medicalese and Get Better Health Results

In Cracking the Code on Pathology Reports, Dr. Cathryn Lapedis, pf the University of Michigan, guides ASPI members through the confusing language of biopsy reports—explaining what normal and cancerous prostate cells look like under the microscope, how Gleason scoring works, and why standard reports often leave patients and even doctors in the dark.

You’ll learn:

• Why immediate patient access to pathology results can trigger panic, and what critical information is most often missed

• How a “patient-centered” report (Q&A style) boosts understanding of cancer presence, grade, and risk—and eases worry

• The power of a Pathology Explanation Clinic, where patients meet directly with their pathologist to review slides, clarify terminology, and catch hidden errors

• Real-world outcomes: improved decision quality, reduced anxiety, and important patient-safety fixes uncovered in VA and academic settings

• Practical next steps: trusted resources for decoding terms like high-grade PIN, and even AI tools that can translate “medicalese” into plain English

Whether you’ve just received your first report or are years into active surveillance, this webinar will help you read between the lines, ask the right questions, and partner more confidently with your care team.

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