Uncertainty in cancer. This time it’s personal.

I thought very carefully about whether or not to post this blog because it is, as the title suggests, quite personal. I decided in the end it was a story worth sharing.

As oncologists and other medical professionals, we deal with uncertainty all the time. We know that even when the path forward is clear, outcomes for our patients can vary. A real challenge comes when we need to make a recommendation despite having only limited data to help guide our recommendation. This can result in multiple reasonable alternative recommendations. The patient may present with a unique health problem or have personal desires and goals that impact our interpretation of how available data applies to that patient. Health care professionals have experiences with other patients with similar scenarios that impact our perspective. The discussion with patients and their loved ones often starts at a very basic level given their limited prior knowledge. These discussions are often nuanced and time consuming given the complexity of the issues at hand. They require us to balance all of these uncertainties as we communicate to our patients our recommendations among various choices, all with the understanding that our recommendations will impact patient decisions and ultimately their lives. Doing so effectively is a large part of the art of medicine.

I wasn’t really thinking about this when my own personal physician asked me a few years back whether I wanted to have a screening PSA test. I knew the data related to PSA screening, including the uncertainties. PSA screening has its proponents and its detractors. Both groups are well meaning and knowledgeable, but put different weights on the various pros and cons of screening.

On one hand, PSA screening can lead to identification of early stage prostate cancer. There is evidence that some early stage cancers that otherwise would have gone undetected and progressed can be detected by PSA screening and cured before they progress. The death rate from prostate cancer since PSA screening was introduced has dropped, perhaps, at least in part, due to screening.

On the other hand, the actual number of “cures” made possible by PSA screening may, in fact, be relatively small. There are considerable numbers of false positives in the form of elevated PSAs that do not reflect cancer. In other cases, an elevated PSA is associated with low risk prostate cancer that is unlikely to impact on the life of the patient (more on that later). PSA screening leads to increased use of procedures and therapies with potential complications, some that can have a significant impact on quality of life. Many patients who develop complications would have lived a full life without knowing they had prostate cancer if they had not had the PSA screening. There is also the financial impact of additional medical care and psychological burden of the diagnosis of “cancer.”

For these reasons, the U.S. Preventive Services task force gives prostate cancer screening a grade of “C”.

They recommend that, for men aged 55 to 69 years, the decision to undergo periodic PSA screening for prostate cancer should be an individual one. Before deciding whether to be screened, men should have an opportunity to discuss the potential benefits and harms of screening with their clinician and to incorporate their values and preferences in the decision.

So, as a cancer professional with a better than average understanding of the advantages, limitations, risks and benefits of PSA screening, what did I do when it comes to my own PSA screening? I decided, without a lot of internal angst, to go ahead with the screening based on my perspective as a scientist that more knowledge is a good thing as long as it is put in perspective. I didn’t give it another thought as my PSA was tracked during my annual physicals. Then, in 2017, my PSA bumped up slightly. When it took another modest bump in 2018, my physician suggested I consult with a Urologist. The Urologist recommended a free PSA followed by an MRI. Again, given my belief that more knowledge is a good thing as long as it is put in perspective (I suspect you can see a pattern emerging here), I agreed. And, as you might guess based on the theme of this blog, the implications of results from my free PSA and the MRI were uncertain.

This led to a more substantial decision. Should I have a prostate biopsy done? Again, I knew the risks and benefits. These included the “inconvenience” of the procedure itself (I will spare you the details), the chances of a significant complication, and the implications the results of the biopsy would have on my future. I applied the perspective that “more knowledge is a good thing as long as it is put in perspective” differently this time given there was a potential downside to my health simply in obtaining the information. Nevertheless, after careful consideration, I decided to proceed with the biopsy. Fortunately, the procedure went smoothly without any complications.

And, of course, the results were uncertain from the point of view of their impact on my health. They revealed a very tiny amount, less than 1% of the tissue on all the biopsies, of very low risk prostate cancer (Gleason 6 for those of you in the field).

Again, I was familiar with the data and ongoing debate in the field as to the implications of such a finding (for example).

I knew that most patients with such low burden, low risk prostate cancer live full lives without further therapy. Indeed, when men my age die of other causes and the prostate is examined, more than half of them are found to have low grade prostate cancer. It would have obviously been better if the biopsies had been flat negative, but the immediate path forward for me was clear. No therapy was needed right away. Instead, we would pursue an approach called “active surveillance”.

That is not to say the uncertainty has come to an end. My risk of developing more advanced prostate cancer is higher than it would be in the general population, albeit not by much. Because of this, much of the “active surveillance” literature recommends a repeat biopsy in 1-2 years. However the data supporting a repeat biopsy for men like me with tiny amounts of very low risk cancer in their original biopsy is limited at best. While the biopsy procedure went smoothly, and the expert care and advice I received was impeccable, it goes without saying I would like to avoid a repeat biopsy if at all possible. Furthermore, there is always the chance of complications next time around. I don’t need to make a decision on a repeat biopsy right now. We will see what my PSA shows over time, and how the science advances. I can then decide on the next step. I just need to live with that uncertainty.

Why am I sharing such a personal story? My training and experience, combined with care and advice from outstanding physicians, allowed me to make, understand and accept decisions about my own care each step in the process. I recognized during this process that most patients have additional challenges that were not issues for me. Many lay people have a hard time grasping that there are uncertainties in medicine in the first place. Once they do grasp that concept, many are uncertain about whether they have enough information and background knowledge to make the right decision. Thoughtful tools have been published that can help health care professionals guide decisions made by their patients.

However, my personal experience has shown how uncertainty remains, and decisions are challenging, even when many years of professional experience are added to such decision frameworks.

Looking back, do I think I made the right decision each step of the way? I still hold to my prior position that “more knowledge is a good thing as long as it is put in perspective.” However, now the phrase “put in perspective” has yet another nuance for me. It includes the understanding that sometimes, more knowledge can actually increase uncertainty when it comes to deciding on the path forward.

Most importantly, this experience has highlighted for me how important it is to do research to reduce uncertainties as much as possible. Also, as cancer and health professionals, we must help patients make decisions despite uncertainty. Discussing the concept of uncertainty and choices with patients takes time and skill. It is more of an art than a science and is an incredibly important part of what we do. No uncertainty there…

2 thoughts on “Uncertainty in cancer. This time it’s personal.

  1. L. D.

    My grandfather passed away due to prostate cancer. Elevated PSA on screenings have caused concern for both my father and my uncle, and worry for the rest of us. I have shared your post and appreciate your insight. Thank you.

  2. Norma M. Wilhellm

    Yes, learning to live with uncertain projections is indeed a problem. More so for someone in their sixties, I think, than for those of us in their eighties. But, life always has its uncertain moments, and good advice from knowledgeable professionals is indeed a good and helpful thing.

    Thanks for sharing.

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