A man with a ('mindful' AS) plan
Why not make your own?
(Editor’s note: If you want to share your personal journey, send me a note at howard@theactivesurveillor.com)
By Howard Wolinsky
Back in eighth grade in Chicago Luella Elementary School, I won a speech contest about Daniel H. Burnham, the famed Chicago architect, and power broker. I think my fellow students were getting back at me for being a weisenheimer.
A successful Chicago architect, Burnham was selected as Director of Works for the 1892–93 World's Columbian Exposition, referred to as "The White City.” (See my photo below.) He had prominent roles in the creation of master plans for the development of a number of cities, including the 1909 Plan of Chicago, which preserved our lakefront and prevented overdevelopment.
So the speech contest was on the 50th anniversary of the Plan of Chicago.
Planning. I have planned for my prostate cancer care should my prostate blow up.
Brian Helfand, MD, my urologist, and I have veered from the guidelines—as do 70% of patients with low-risk prostate cancer.
Here’s Dr. Helfand about to give me the finger:
I will continue taking the PHI (Prostate Health Index), a more sophisticated type of PSA test annually. If my PSA rises, I will step things up with a mpMRI and/or a micro-ultrasound at the Cleveland Clinic and transperineal biopsy.
I haven’t had an MRI or biopsy in almost six years. No anxiety. Things can change.
I have noticed that newly diagnosed men increasingly are making prostate care plans.
It’s a good move to reduce anxiety.
Randy Apsel is a man with a prostate plan.
Apsel, 68, of Seattle, was diagnosed on January 12 with Gleason 3+3=6, the lowest grade of prostate cancer. His MRI indicated a 1.3cm lesion, prompting the need to investigate further with an Artemis fusion biopsy, which found a small carcinoma in one prostate core out of 16, representing approximately 5% of the tissue in that core.
Apsel recently retired after 40 years in various technical fields, including geophysics, health-care information technology, and high-tech project management. So he has long career in risk management and problem-solving.
After getting the recommendation to go on Active Surveillance (AS), he became anxious about possible future cancer “progression” scenarios as do many men on AS.
To mitigate those anxieties, Apsel created a plan to think through and document how he would deal with each “progression” scenario to reduce the fretting and then “park” the plan in his “anxiety parking lot” to live more mindfully in the present.
He called his plan “Mindful Surveillance” (MiSurv) to address both the clinical and emotional aspects of managing his prostate cancer. He reviewed the plan with his medical team and many others, including The Active Surveillor, and he received positive feedback and encouragement to share it with other low-grade cancer patients who might benefit from considering such an approach for themselves.
I am posting Apsel’s personal Mindful Surveillance plan in Adobe PDF format.
(A PPT version is the source document and could be used as a template or framework to create your own plan. The PDF version might be easier for some of you to read, especially if you aren’t comfortable with PowerPoint. But Substack does not support PPT. Write to me at howard@theactivesurveillor.com if you want a copy.)
(Apsel included an IMPORTANT NOTE after his personal narrative that he prefers to not receive feedback on his personal choices to keep it “parked” for as long as possible, but he is happy to consider feedback to make it easier for others to use as a template. I hope his Mindful Surveillance plan helps some of your manage your AS anxieties/anxious surveillance.)
So, as Burnham said, make no little plans.
Why not let The Active Surveillor know what you think about prostate cancer planning in this Quick Survey.
Commemorating the Great Planner’s Columbian Expo:
(Howard Wolinsky)
This is a great way to manage AS. I'm building my plan, to discuss with the Urologist at my June appointment.