High PSA, low Gleason score: Therapist talks about Active Surveillance,and how he handles emotional distress

(Editor’s note: Anxiety is not an uncommon problem in patients with low-risk prostate cancer. A recent study showed that over half of us on Active Surveillance are anxious. Ten percent say they are anxious all the time.

(Every urologist visit, prostate-specific antigen (PSA) level, MRI, or biopsy can trigger emotional distress. Just learning to co-exist with a lame cancer can be upsetting ,

(Michael Jon Altman knows all about anxious surveillance--as a patient with Gleason 6 with HIGH PSAs and a psychotherapist. Here’s what he has to say about managing anxiety and his philosophy toward life.)

By Michael Jon Altman

I must have been around nine or 10 years old when mortality smacked me in the face. I was reading the New York Daily News, while eating breakfast. and came across an article about scientists predicting the Earth would be burning up in 180 million years--give or take--as its orbit grows ever closer to the sun.

Fast forward to a couple of years ago when my 14.4 PSA score made an even greater impact: more like a punch in the solar plexus. My primary-care physician took the liberty, unbeknownst to me, of ordering a PSA (prostate-specific antigen) blood level screening. 

I was furious, and admittedly, the high score fueled my confrontation with the doctor, having learned how unethical it was to do that without my permission. He apologized profusely, and I really liked him, so we moved on. That all took place during my biennial physical. 

Thankfully, I haven't been a regular customer in doctors’ offices. I never had an operation and only once had stayed overnight in a hospital to have my broken tibia (basketball injury) treated. I don't care for the environment. 

The corporate intrusion doesn't mesh well with healing. Waiting time is usually twice the length of the actual visit, and the docs seem to get antsy after 15 minutes. UroLift posters in each office don't help the ambiance. After a total of four visits with three different urologists, I found a doctor with whom I could relate.

He had a sense of humor, and I felt like my prostate didn't walk in alone. I had done extensive reading, attended international conferences on YouTube, discovered Prostate Cancer Research Institute, and felt prepared to participate in the decision-making process. The previous three urologists were very condescending and paid lip service to anything I learned along the way. I felt I was interrupting their script.

Over the course of these visits, the following tests were performed: genomic test, urine retention, Digital Rectal Exam, MRI, a guided biopsy, and PSMA/PET scan. I have three lesions: 3mm., 4mm., and 5mm.—all classified as Gleason 3+3 Grade Group 1) by Dr. Jonathan Epstein and his team at Johns Hopkins.

I suspect the high PSA score cleared me for the PSMA/PET scan. However, I’m still awaiting a response from my appeal to Medicare Advantage concerning the $1,100 for which I’m still held responsible.

The overall results from the PSMA/PET profoundly relieved me because they showed my cancer was confined to the prostate. But I’m sure that the results left my doctor puzzled.

How’s a guy with a 14.4 PSA that rose to 17.2 within a year's time getting a Gleason 6 (Grade Group 1) score backed up with no sign of metastases? No explanation was offered for my high PSA.

The doctors didn't know what to make of those results. I was an anomaly, a happy one at that.

 (Michael Jon Altman.)

And just recently, I declared to my wife Lori and select friends that I'm on hiatus from further visits for the time being. I'm eating more carefully than ever (mostly, but not fanatically vegan), and taking my curated supplements (powdered mushrooms, various prostate herbs: saw palmetto, nettle, lemon balm), and deepening my meditation practice. I trained in Vipassana meditation [https://www.dhamma.org/en/index], or mindful meditation), and stayed faithful to my yoga and exercise regimens.

Here are some thoughts from my psychotherapeutic perspective: Throughout the above ordeal, my anxiety was intense. Sleep became more problematic, especially knowing that insomnia could only weaken my immune system.  I was caught in a loop.

We call it anxiety, but at the root, it's fear. Death was no longer a second cousin twice removed. It had become my new roommate stomping around the house. All anxiety is the same, only distinguished by its intensity and intrusive frequency. It encroaches upon whatever we're doing and often sabotages what we're doing because we feel unable to engage in our activities fully. 

When we can't seem to take a full breath, we're paying a toll to anxiety.

That pesky walnut-sized gland hiding behind the bladder, ever elusive to the prodding, pricking, and filming protocols, resistant to revealing its secrets, has become our nemesis. It has become our challenge to confront ourselves; nothing wrong with that. Indeed, that's the blessing of illness; we are going to die, and truly coming to terms with that can be quite liberating.

Here's a passage from the Gnostic Gospels which guides my life and my work:

"If you bring forth that which is within you

Then that which is within you

Will be your salvation

If you do not bring forth that which is within you

Then that which is within you

Will destroy you.”

We often live our lives with the belief that the bell somehow never rings for us; or it peals faintly out there in the distant future. We consider Death our enemy and that it must remain so, thereby keeping us in fear and trepidation. 

The question arises: Should all men with prostate cancer be screened for anxiety? I can only offer up a qualified answer: yes, but not the perfunctory 10-question diagnostic tool. The true screening for anxiety involves a candid discussion with your doctor in which you can speak to the fears and concerns, and strategies you've developed in coping with this new "influence" in your life.

Ideally, your doctor would have a list of providers that have been vetted and deemed worthy of referral. As a therapist, I believe almost everyone could benefit from psychotherapy (see Gnostic Gospel above). But ultimately, we are responsible for all the choices we make. 

That being said, allow me to offer some considerations, AKA, how not to be a nervous wreck:

--What if the PSA score is not sacrosanct? Why has Richard Ablin, PhD., a scientist who discovered a form of PSA chosen not to get tested? (Ablin co-authored “The Great Prostate Hoax.: How Big Medicine Hijacked the PSA Test and Caused a Public Health Disaster.”)

--What if the biopsy is not accurate? ....Do I get a 2^nd or 3^rd opinion?

--What if my urologist and radiologist is not really deserving my trust? Or maybe they are simply too inexperienced?

--What if I choose the wrong procedure?

--What if I wait too long and now it's too late?

--What if the DaVinci robot is just hype?

--What if the best breakthrough treatment is just around the corner?

--What if: diapers and a farewell to erections are the outcomes?

--What if: your turn.................................................................

What other measures can we take? 

We're always advised to take care of ourselves. Having agency in our own health is of utmost importance. Of course, we should exercise, eat carefully, and be disciplined in our behavioral choices. 

Meditation is defined in various ways. I consider it to be a practice in which we learn to go beyond the turbulent waves of thinking and enter the quiet depths of our being. (https://www.dhamma.org/en/index)

Active surveillance? Well, yes, if you feel you qualify and are willing to be responsible for making that choice. The ultimate decision is yours to make.

Attend support groups? Again, yes, if you find them helpful and supportive. Sometimes they can prove too myopic and narrow in defining who we are. I believe the most valuable groups are those where the participants can freely share without the prostate always having to be the main focus.

Finally, here are some exercises and activities, and discoveries that I have found to be very useful:

•Do not resist anxiety; resistance only strengthens the discomfort. Anxiety is a symptom that reveals to us that we are not being fully present in the moment. Immerse yourself in your activities, and if you should find that difficult to do, then do something else!

•If you're continually second-guessing your choices, find a doctor you can trust and accept his/her guidance and leave it at that.

•Do your due diligence in learning all you can about prostate cancer and then give yourself some breathing room. Don't let it consume your waking state.

•Remain aware that you are responsible for the choices you make and live without self-reproach. Life is very mysterious, and trust you're doing the best you can.

•Remember: healing is an innate capacity available to us all and not canceled out by death.

•Focus on your breathing. Without effort, become intimately aware of your breathing experience.

•If you find yourself obsessing, move your eyes several times from the far left to the far right, back and forth, to break the spell.

•The vagus nerve can balance and harmonize our energies. One simple exercise: lie on your back, head facing the ceiling, and move just your eyes to the far left and keep looking there until a yawn, or sigh, or swallow occurs, and then do the same with your eyes to the far right. You'll be pleasantly surprised.

•And most importantly: Open yourself fully to Living. Learn to be truly present and thankful to all that Life provides us. Trust that wherever you are is where you need to be.

Michael Jon Altman, 74, was diagnosed with Gleason 6 at age 72, He received his Bachelor's degree from City College of New York (CCNY) and his Master's degree in psychology from the University of Vermont. He has been a psychotherapist since 1978. He has served as the Education Director of Boulder County Jail and at the Mental Health Center of Boulder County as an Interventionist in Boulder Valley schools. He has been involved in various pursuits of healing spanning decades. His training and certifications include: Yoga, Vipassana Meditation, Applied Kinesiology, Process-Oriented/ Dreambody Work, NLP, Hypnotherapy, Trauma Informed Therapy and Brainspotting.

He's been in private practice for over 40 years and continues his practice currently in Lafayette, Colorado, where he lives with his wife Lori and their dog Maple. He's an avid fly fisherman, gardener, and mountain wanderer. His four grown children and four grandchildren reside in Colorado and Upstate NY. You can hear an interview with Michael in the KGNU archives from 1/17/2020. You can reach him at mjonaltman@msn.com.

Dr. Jonathan Epstein’s video and Q&A

By Howard Wolinsky

Jonathan Epstein, MD, of Johns Hopkins, is an international pathology rockstar.

He drew about 650 registrants to his April 29 videos from Active Surveillance Patients International’s event. Many just wanted to view the videos later. More than 250 patients attended the meeting.

So ASPI’s Bill Manning posted the videos STAT.

Here is the video from Active Surveillance 101 in biopsies and second opinions along with a Q&A with Dr. E.: https://aspatients.org/meeting/as-101-episode-5-second-opinions-and-biopsies/

The ActiveSurveillor.com will report more soon.

The full AS 101 series is available at https://aspatients.org/meeting/second-opinions-and-biopsies/