“How old would you be if you didn't know how old you are?”

Satchel Paige

(Editor’s note: Allan Greenberg is a good friend from the AnCan Active Surveillance Virtual Support Group. He attends when he can break away from his square dancing group. He often brings up important questions related to age and active surveillance.

When do we get off the AS train? Do we get off AS—ever?

Allan is inaugurating a new section of The Active Surveillor newsletter: “My Active Surveillance Journey.” If you want to tell your story, please write to me at howardwolinsky@substack.com. I’ll tell mine next time.)

Allan tells the poignant story of his life and his process in deciding whether to stay on active surveillance.

My urologist, Brian Helfand, MD, says chronological age is less important than your physical age determined through an exam and some mathematical formulas in deciding whether to be on AS or following the path of watchful waiting. The oldest man he has had on AS is 89. The patient comes from a family in which the males routinely live to over 100.

How many years do you need to be on AS? Should you go on watchful waiting? Afterall, chances are men on AS, like others with prostate cancer, will die from something else. Take care of your ticker.

Some men tire of all the poking and prodding (read biopsies and MRIs and digital rectal exams) that AS patients go through.

Allan is asking more fundamental questions. Here is his story:)

By Allan Greenberg

She was in a coma. There had been a massive brain aneurism. The surgeon indicated that another surgery might work, with about a 10% chance of full success. At an earlier time, she had clearly said that she was not interested in a life without the quality that she enjoyed at that time. Surgery without complete success? Damn the decision-maker-- bitter resentment towards him for as long as she might live.

A second surgery? No way! Much too risky, given the context we had long ago established. Despite my qualms, I said “No surgery”—let her die peacefully and not have to, in all likelihood, live a life of resentment, regret, and despair. And for me, ever since, there has been the recurring thought that had the surgery been successful, life with my first real love would have been so different for me and my son. I was 50 at the time, my son 17 and one week from his senior prom.  

(Allan Greenberg)

She had just undergone her 10th or 11th experimental treatment for Stage 4 metastasized breast cancer. She again suffered side effects that were expected for only 10% of patients. Each attempt at treatment involved guesswork, medicine practiced as an art as much as a science. Her life was without wine, without chocolate, and with pain, despite efforts to control it: her quality of life was almost completely missing. 

Decisions to continue those experimental treatments were made in part with me in mind: we did have a wonderful life together, and she remembered how she had felt in the time after her first husband had died suddenly. My second wife chose to end treatment: her choice. I was left again to grapple with the effects, as I had to during the nine years of her treatment watching her periods of suffering, unable to do much more than provide a shoulder and help her cope. I was 64 at the time of her death.

Breast cancer—my third wife’s unexpected diagnosis in the summer of 2021. Her treatment was relatively easy, and apparently successful. She wondered why I was so much more affected by this than was she. But she understands that my history significantly affects my attitude. Age 81 at the time.

Context, context, context. Age and life expectancy, including hopes for a life with quality. These significantly form the situation for my decision-making. There is no question that my decisions about prostate cancer and treatment would have differed when I was 49 or 51, 54 or 65, and now at 81. 

Every man diagnosed with prostate cancer faces it within his own context. Life experience, family hopes, and expectations, life expectancy, co-morbidities. This is not vanilla—the situations are personal, individual, and there is no one correct answer or approach. In addition to experiential bases, there is one’s own attitude towards life. 

Do you believe in individual choice as the final determinant for the actions you take? Do you believe in some kind of fate determined by a force or forces outside your control? Are you a risk-taker? Are you a realist or an idealist? Do you let others make decisions for you, whether significant other, family members, doctor(s), or do you make your own decisions, based on your own understanding of your context? Do you expect (or hope realistically) to live for 5 years, 10 years, 30 years? Do you hope to live a life with all the quality that you enjoy today? Including all the activities alone, with significant other, with family? Are you committed to doing everything possible to avoid having your significant other and/or family members suffer as they watch you grapple with life-defining decisions that include no guarantees?

Were I unable to square dance, bird watching, bicycle ride, practice all components of tai chi that I currently do, have a satisfying sex life and have to worry about side effects that I, as an older man, have no interest in suffering, my quality of life would be questionable, to say the least. And this would be another component of the context for MY decision-making.

In a recent interaction with another prostate cancer patient, questions arose about how you would approach treatment. Active surveillance? Watchful waiting? Nothing? 

At 69, as a Gleason 6 diagnosee (this may not be a word, but you know what I mean), I chose active surveillance. 

After two transrectal biopsies and periodic PSA tests, I chose to change my urologist—this is a decision many of us have to make because we have to be comfortable with our doctor(s) and believe that their recommendations and actions are in our own best interests.  And it is tough if they are hurt or upset by our decisions—after all, it is my life or our life that is at issue, not theirs. 

After a third biopsy and an experimental MRI (using a coil, and that resulted in nothing particularly defining), my urologist and I came to a decision that I would have my PSA tested twice a year, we would watch for a significant rate of increase, and review my decision as we moved on. There is no question that by the time I was 75 my approach to AS had become something between AS and the so-called “Watchful Waiting” (note my context for decision-making, my history, my view of life). And now, at 81 ½, I am considering another change, even while I have scheduled another MRI (after having gone through one in May of 2021). 

If I decide, regardless of the outcome of the coming MRI, to opt out of AS, it will be in light of the entire context of my approach to life. I do not believe, if I choose to do nothing more—and this would not mean switching to WW, but rather actively and thoughtfully deciding that diagnosis and possible treatment were no longer truly meaningful for me, were no longer desirable options for me. This is not “giving up,” but taking a carefully considered control of my own life. 

What, in fact, does "giving up" mean?  Living a life that has lost much of its quality?  Recognizing that a desirable active life may basically be approaching an endpoint when one reaches one's late 80's?  I watched my father "live" the last 5 years of his life as a Parkinson's sufferer with increasing dementia; I watched my mother suffer, in all awareness, essentially immobile and unable to do most of the things in which she had been interested.   

I accompanied my second wife, as her caregiver, through nine years of treatment for Stage 4 metastasized breast cancer, going through innumerable experimental trials and suffering the side effects that were "rare" in virtually every one of them, until she could tolerate no more, with her quality of life declining steadily (yes, with ups and downs), and have a fairly good sense of what that's about.  In an extreme case, is the person who is suffering an incurable, increasingly debilitating, chronic disease and chooses to end their life "giving up"?  I do not think so.

I believe that each individual should be allowed to make decisions about his/ her own life without being judged by other people according to their own standards and expectations, and in light of their own contexts, whether believer or non-believer, conservative or liberal, Malthusian or Sisyphean or Sartrian, and without someone or something external to them deciding what is right or wrong for them.  People who might choose otherwise should be tolerant of those with whom they differ, so long as it does not have any adverse impact upon them.

Given all that I have enumerated, there are questions that remain unanswered, in spite of listening to experts, the reading and reflecting I have done, and my communing with nature.  Among these questions are: 

--What is the likelihood, given my initial diagnosis (which many doctors have contended may not have been completely accurate, given the nature of PSA and of transrectal biopsies 

[Note: on 1/20/2022, my urologist, in a discussion with me, arguably suggested that a guided transrectal biopsy could provide as much information as a guided transperineal biopsy and that given the proper care to how it was done, the threat of sepsis was insignificantly different—this even in the light of the fact that he indicated they were shifting increasingly to transperineal biopsies at Dana Farber/Brigham & Women’s), of my dying of prostate cancer? Or of suffering to the extent that my quality of life would be significantly impaired as a result of PC? or of either of the two occurring during a time when I would otherwise continue to be active in a manner to which I was accustomed and committed?

--What treatment would be guaranteed to not result in side effects that would significantly impair my quality of life?

--What role has my particular form of AS (probably somewhere between AS and watchful waiting) played in my situation?

--How much of a role should my closest relations play in my decision-making? (my wife, who is 12 years my junior; my son, who is 51, and his wife, who is the same age?)

Am I willing to change my lifestyle in order to gain some uncertain number of additional years of life, and if “yes,” to what extent?

--Was there a point, during my time as a patient on AS, when I would have embraced treatment, regardless of the uncertainties related to side effects?

These are some of the questions for which I have sought and explored answers. Certainly aided by my experiences with the support group which I attend (albeit somewhat irregularly at the present time due to a conflict with my square dancing) as well as by the special “expert” presentations I have sat in on, in the end, I have had reinforced the view that the final answers are entirely up to me.

About Allan Greenberg: First diagnosed October 2009. Lives in Scituate, Mass.  First urologist was associated with South Shore Hospital; changed to current urologist who is with Dana Farber/Brigham & Women's (Dr. Steven Chang).  Third (and decisive) opinion to go with AS was Dr. Mary-Ellen Taplin of Dana Farber; she was also the 2nd opinion recently when I was considering another biopsy (she was of the opinion that we should wait a year and do another MRI).  Most recent PSA went down, for what that's worth.

He has a Ph.D. in modern European history and taught college for many years, stopping when his second wife was diagnosed with Stage 4 metastatic breast cancer (death came after nine years).  He also was involved in teaching a continuing ed course (of sorts) with a medical researcher, which they called "Medicine:  Art or Science?"  (conclusion was like art AND science).