When it feels like a matter of life and death, especially our own, we need reliable information to move forward. As we chart our course after a cancer diagnosis, we inevitably confront the issue of trust.
In this complex world, we need help. When it comes to discovering, diagnosing, understanding, evaluating, managing, treating, and surviving prostate cancer, we depend on advisors we can trust. But where do we turn? Who do we ask? Who can we trust?
Let’s consider this by continuing the story of Pete the Newbie. In a previous post we explored how life instantly changed for Pete beginning on his D-day (diagnosis day). I understand Pete because I was him. Our Pete is a fictitious “any-Pete,” a composite newbie based on my personal experience in 2010, and many conversations with others in the club nobody wants to join (yeah, that club). We explored his new mindset, his feelings, and his concerns just after learning he had prostate cancer.
As a prostate cancer newbie, Pete has a long road ahead. He must digest and accept the fact that he has cancer—a difficult but necessary adjustment. But that is only the beginning, and Pete must then face even greater challenges on the road ahead.
What’s next for Pete? Having accepted that he is now a “man with cancer,” he must decide what to do about it. He knows there are many options for treating prostate cancer. Sifting through them will be difficult and confusing, especially in his state of emotional turmoil. Where should he begin?
Pete understands that urologists are not only diagnosticians. They are also surgeons, fully willing and able to remove a cancerous prostate …
Logically, Pete begins his quest in the office of Dr. Uro, his fictitious urologist. He is hoping that Dr. Uro, who delicately delivered Pete’s prostate cancer diagnosis, will similarly provide a roadmap to a cure. Pete very much wants to trust Dr. Uro but knows it can’t be blind trust. It must be justified.
Pete understands that urologists are not only diagnosticians. They are also surgeons, fully willing and able to remove a cancerous prostate, and therein lies his first trust-related dilemma.
A trust-related dilemma
Pete knows Dr. Uro as a knowledgeable, kind, caring person. But should he trust him to be objective about whether surgery is the right remedy for Pete? If he were to recommend a radical prostatectomy, should Pete follow that advice? Or should he wonder if there was bias in this recommendation?
Surely it would be ridiculous to expect a urologist to never recommend surgery, and it should not surprise us when they do. After all, surgeons become surgeons because they believe surgery works. But the key for Pete is to ascertain the degree to which his urologist is willing to concede that other treatments also work and are at least sometimes better.
How can Pete determine whether his urologist makes that concession? How can he tell whether Dr. Uro believes surgery is the only “real” cure—the “gold standard” of prostate cancer treatment? I’ll provide a practical approach later in this article that will help Pete make that determination, but first let’s follow Pete’s journey a little further.
Preaching what you practice
Pete is an independent thinker. He knows that his decision about how to treat his prostate cancer allows for no do-overs, so he must leave no stone unturned in his selection of therapy. He’s heard about non-surgical remedies for prostate cancer and wants to be thorough and prudent by investigating them all. He’s heard about HIFU, brachytherapy, conventional radiation, proton beam therapy, Cyberknife, and a few others. He believes he must explore those options.
First, he discovers a local facility specializing in HIFU—high intensity focused ultrasound therapy—and schedules a consultation. The physician assures him that for a man Pete’s age, in his condition, with his diagnosis, HIFU is an excellent choice. It’s a cutting edge, state-of-the-art cancer therapy, he says, and then enthusiastically explains the benefits of HIFU. It does indeed sound wonderful, and Pete is excited and hopeful. Maybe he can avoid going under the surgeon’s knife.
Conveniently, there is also a nearby hospital offering brachytherapy—radioactive seed implants—and Pete has heard a lot about this alternative. Again, he has a consultation, and again, he is met with great enthusiasm. It works, it’s fast, it’s affordable, and the results are remarkable for a man like Pete, he’s told. Hmm.
To continue his due diligence, Pete does some longer-distance driving to consult with neighboring facilities offering IMRT (conventional radiation), proton beam therapy, DaVinci surgery, and Cyberknife. By now he is not surprised to learn that he is an ideal candidate for them all, and that each therapy is better than the others.
Doctors specialize because they are excited about the benefits of the procedure they perform. They are generally not trying to mislead …
Pete has finally figured it out. Doctors specialize because they are excited about the benefits of the procedure they perform. They are generally not trying to mislead him about the therapy they offer. They offer it because they believe in it, and they are understandably and predictably enthusiastic.
They preach what they practice. It makes perfect sense.
A different approach
Despite an oversized suitcase full of information about his treatment options, Pete is still unable to determine which is best or who to believe. So he takes a new approach. He asks people who’ve been there, done it, and have no axe to grind.
He asks us, his fellow patients.
Pete contacts each treatment facility again, this time asking for patient references. Some cannot put him in touch with former patients because of HIPAA privacy concerns. Others maintain a list of voluntary patient ambassadors, and gladly provide a copy. He also knows some friends of friends who treated their prostate cancers in various ways and are willing to talk with him. Pete believes he’ll finally hear some unbiased, man-to-man, absolute truth.
In general, he’d be wrong.
Pete will soon discover that a negative answer will be rare when he asks a man how he’s doing, if he’s satisfied with the therapy he chose, and whether he would choose it again and would recommend it. If a man has had a good outcome, of course he’ll reply in the affirmative. But even if things have not gone so well, he will still likely give a positive response.
If a man has had a good outcome, of course he’ll reply in the affirmative. But even if things have not gone so well, he will still likely give a positive response.
Why? Self-preservation. For better or worse, every one of us must live with the irrevocable choice we made. There are no do-overs in this cancer treatment game. If things turn out well, there’s no problem. But if the cancer is not brought under control or if the side effects are troublesome, what are we to do? Berate ourselves forever? Remain unhappy, bitter, and angry for life?
Most men will “man up” and find a way to overcome any guilt or remorse they feel—as we must in order to psychologically survive and lead a happy life. Putting a positive spin on a disappointing experience takes a lot of effort, but once a man has done so it becomes part of who he is. Pete might hope for a brutally honest answer from such a man, but it is unfair and unrealistic to expect him to recall and rekindle the negatives of his experience merely because he was asked.
The results of cancer treatment run the gamut from great to poor. We’ll eagerly share the good results. We’ll add the necessary amount of positive spin to allow us to comfortably live with the lesser results. Either way, when we answer Pete’s questions we are answering to ourselves as well as to Pete, so it will likely be a positive response.
The right questions
So where does this leave Pete? How can he determine who to trust? How can he know when bias or positive spin is involved? We’ve seen why Pete must assume a degree of bias even from doctors and patients who have otherwise earned his trust. Despite that, he can still obtain good information by carefully crafting the right questions. But phrasing a question in a useful way is neither easy nor obvious, especially under stress.
Pete must assume a degree of bias even from doctors and patients who have otherwise earned his trust.
Questions like those in the first list below are typical, but unlikely to elicit helpful answers because of the phenomena described above. They will almost always produce positive responses that minimize the negatives. They may help move the conversation along and Pete can still ask them, but he should accept the responses with a large grain of salt.
In these examples I’ll use “XCAN” to represent the therapy offered or received, whatever it may be. Assume that each doctor and patient made a strong or irrevocable commitment to XCAN, so they need to believe it’s a good choice. With that in mind, try to imagine how they might be expected to answer each of these questions:
Dr. Jones, do you think your XCAN therapy can help me?
Dr. Smith, what are the pros and cons of XCAN?
Dr. Brown, why do you think I should have XCAN?
Dr. White, will XCAN work for me? Is it the best choice?
Dr. Green, is your XCAN procedure risky for me?
Mr. Black, are you happy you decided to have XCAN?
Mr. Silver, knowing what you know now, would choose XCAN again if you could start over?
Mr. Gold, having had XCAN yourself, do you recommend it?
Mr. Johnson, have you had any side effects?
Mr. Jackson, how are you doing now, after XCAN?
Pete might obtain better information and greater insight into the degree of bias by asking non-threatening questions more like those in the following list. Immediately after each question I’ve explained its main benefit.
Dr. Smith, if for some reason I could not have XCAN, what would be a good alternative? [This is a way to see if Dr. Smith struggles to find something positive about a therapy other than XCAN.]
Dr. Jones, in what situations might XCAN not be the best choice? [No therapy is best in every situation, so Dr. Jones should have a fair and reasonable answer to this if he is to be credible.]
Dr. Brown, have you ever offered other therapies? What did you like about them, compared to XCAN, and why did you switch? [Many doctors move from one specialty to another. Their reasons can provide useful insight into the doctor, those therapies, and how they compare to XCAN.]
Dr. White, have any of your patients had negative outcomes with XCAN? What went wrong for them? [No therapy results in 100% perfect results, and Dr. White should be willing to admit that and possibly give at least some generalized examples.]
Dr. Green, what have your patients found most surprising about XCAN, both positively and negatively so? What do you think might surprise me? [If there have been no surprises—good or bad—Dr. Green is either not very perceptive or not forthcoming.]
Mr. Black, did you consider treatment with something other than XCAN? [It not, it could be interesting to ask why he didn’t consider other options. This context will help put his other comments in perspective.]
Mr. Silver, what did your doctor not tell you about XCAN? What surprised you about it? [Doctors can’t tell us everything in advance, so there are always surprises. A patient’s view of this can provide great insight into a therapy.]
Mr. Gold, what side effects do you think I might experience if I have XCAN? [Mr. Gold will want to discount or minimize his own side effects but might more easily discuss them indirectly as possibilities for you.]
Mr. Johnson, what were the best and worst parts of XCAN? [He’ll easily offer positives and will likely want to seem fair by sharing some negatives, too. This phrasing creates a risk-free opportunity for Mr. Johnsons to divulge negatives without revisiting the irrevocable choice he must live with.]
So, who do you trust?
Just as there is no magic pill to make cancer simply disappear, there is no foolproof litmus test for trustworthiness. Still, we begin our journey with the hope that a trusted source will identify the elusive silver bullet. We soon abandon this hope, focus on the more realistic and complex choices, and seek advice.
Just as there is no magic pill to make cancer simply disappear, there is no foolproof litmus test for trustworthiness.
With today’s many excellent remedies for prostate cancer, it’s easy to find people willing to expound the many very good reasons Pete can hope for a successful outcome—valuable information, for sure. But it should now also be clear why it’s so difficult to find anyone willing and able to objectively share the other side of the story associated with their therapy.
When you do find such a person, you’ve struck gold. Listen carefully and make use of what you learn from them. But also accept that in the end, you must trust your own instincts. Do your best to understand a reasonable amount of the science of prostate cancer treatment, but also use common sense. If a therapy doesn’t make sense to you or if just doesn’t feel right, it may not be a good choice. In that case, keep exploring until you feel confident.
In the end, Pete must trust himself.
Who did you trust, and why? I’d like to hear your story, so email me. Thanks!