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?
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.
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.
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.
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.
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 *protected email*. Thanks!
For us prostate cancer patients, life changed forever on the day we were diagnosed. Like flipping a cerebral switch, our view of the world was instantly reprioritized from top to bottom. Much of what once mattered little suddenly became paramount, and what may have seemed important often became trivial.
We cancer patients know this, but the other people in our lives—our doctors, nurses, friends, and family—might not fully appreciate the intensity of this altered perspective on life. A closer look at our brain-change could help them understand us, and maybe even help us better understand ourselves.
What is it like to become a prostate cancer newbie overnight? Only men who have experienced it can know the answer on a deeply personal level. But we can all gain some insight by meeting Pete as he becomes a member of the club nobody wants to join. Maybe understanding Pete can help us more effectively help other prostate cancer newbies.
From his diagnosis day forward, what does Pete care most about? How does he change on his personal D-Day? What does he need?
First and foremost, Pete loses his peripheral vision and develops a severe case of tunnel vision aimed directly at himself. Like many of us, Pete was a gracious, generous, helpful person before cancer. After cancer many of us became even more so, and maybe Pete will, too.
But during cancer, and especially just after his diagnosis, Pete instinctively relegates his altruistic endeavors and previously important personal projects to the back burner. After D-Day he focuses all his energy on self-preservation, as he must.
Other people in Pete’s life would be well-advised to remember that this may not be the best time to ask much of Pete. There may be exceptions, but he’s probably not going to be interested in becoming treasurer of his neighborhood association. Or actively campaigning for his political causes. Or adopting a pet. Or painting the barn.
Maybe later, but not now.
Like many of us on our D-Day, Pete experiences some degree of panic, triggering the primitive “fight or flight” reaction innate in all of us. He experiences his cancer as a clear and present danger.
If it were an attacking gorilla Pete would either run from it or engage it in battle. He’d do this instinctively, quickly, and with great conviction.
But on D-Day Pete finds himself face-to-face not with a gorilla, but with a doctor, and the message he wants to convey is short and simple: fix it NOW. Whether he has a supposedly slow-growing cancer or an aggressive one, Pete is in a hurry to rid himself of it. He does not feel that time is on his side or his to waste. He knows he can’t run from it, and there’s only one remaining option: he must fight it.
Following his diagnosis, equipped with his doctor’s recommendations and possibly a list of other options, Pete begins what is often called “due diligence.” He does research, gets second and third opinions, contacts other patients, and tries his level best to make sense of the complex, messy new world in which he finds himself. And he is in a big hurry to take action and get it done.
This is why Pete is so appreciative of quick, human responses, and is grateful to those who respect the urgency he feels as he embarks onto this treacherous road. He is fighting cancer and doesn’t want to also battle his way through a telephone maze of menus to reach a helpful human. He’s not interested in leaving voicemail. Nor does he want to wait a week to receive critical information he requested and needed yesterday.
Like most cancer newbies, Pete perceives every roadblock and even small delays as putting him one step closer to being too late. For me, this happened in 2010, and I remember the feeling well. Since then, I have not met a single cancer newbie whose approach is relaxed or casual. For this reason, when new patients reach out to me via my book or this blog I reply within a day. I know first-hand that it’s urgent.
Perhaps even more than the fear of a relatively unlikely death from prostate cancer, Pete is concerned about losing his manhood. To him, facing the possible side effects of any treatment for prostate cancer is at least as terrifying as battling his cancer. Without question, he wants to win that battle, but at what cost?
We all know intellectually that continence, sexual prowess, and good urinary and bowel control do not make a male a man. We know that if we live long enough we’ll all suffer in these areas even without cancer. But while it’s easy to apply that understanding to other men, it’s different when it’s you. And Pete feels at risk of losing control and becoming what he perceives to be less of a man. He can’t help it. He feels threatened.
This will likely be Pete’s primary criterion in making the decisions he faces. He would very possibly rather risk death than what he perceives as loss of manliness. In the context of prostate cancer, many consider this to be a matter of preserving quality of life, which it certainly is.
But to Pete, it is more than that. It’s his identity.
It doesn’t take a cancer diagnosis to appreciate compassion, but Pete is especially grateful for small gestures of kindness. He doesn’t particularly need or want sympathy, but empathy accompanied by action is priceless.
Pete was fortunate in this regard. His first contact with his chosen treatment facility was with a person who knew how to listen and took the time to let him talk. Pete’s contact took ownership of guiding him through the process of beginning treatment, remained easily available throughout, and in effect became his anchor in stormy weather.
He was lucky a second time when in a rare gesture, Pete’s oncologist offered him his private mobile phone number. While this is not always wise or practical, I do know a handful of oncologists who often share their number.
I’ve asked them why, and their answer is simple: they do so because it gives their patient comfort. Furthermore, Pete’s doctor told me, if he were in Pete’s shoes he would want the number “just in case.”
Perhaps surprisingly, these doctors noted that their patients rarely use the number, but having it gives them a great feeling of security and reinforces the fact that their doctor truly cares. It’s a small, unexpected gesture of compassion with a big payoff.
Pete is especially grateful for the veteran patients who are generously willing to spend considerable time talking with him, and most importantly, listening. He may not realize it at that moment, but what he really seeks most from former patients is not more advice—he’s had plenty of that—but rather reassurance that he is not alone.
Only other patients can provide relief from the often intense loneliness felt on D-Day. Connecting with men who have made the same journey provides much-needed support along with hope that everything will be okay. It is a unique and invaluable camaraderie.
There is no shortage of doctors, friends, and family members who will tell Pete what they think he should do. Their opinions will naturally vary, which tends to add to the stress and confusion he already has. A scarcer commodity is a non-judgmental person who will patiently lend an ear.
What Pete needs most is someone to just listen.
At the time of this writing I don’t know anyone who goes by “Pete,” although I do know a couple Peters. The Pete featured here is a fictional composite prostate cancer newbie based on my own experience in that role, and that of other men I’ve spoken with since joining the PCA club. And of course, exceptions may apply.
Suffice it to say that on D-Day, a transformation takes place for a man diagnosed with prostate cancer. His world is forever changed, and now you have had a glimpse into that world.
How did your world change on D-Day? Email me *protected email*.
This article is not about fake news. Nor is it about bad news. It’s not even about good news.
This article is about no news, which contrary to popular belief, is not always good news.
When proton therapy is entirely left out of a discussion about radiotherapy for treating cancer—especially prostate cancer—my blood boils. When people use the term “radiation” with the unstated assumption that there is only one kind—the conventional type, the traditional approach, “regular” radiation—I want to tear my hair out.
As you might already detect, this article is a bit of a rant, triggered by a couple articles I recently read and will discuss here. It’s a rant about failures to mention proton therapy at blatantly appropriate opportunities. It’s about allowing proton therapy to completely lose its identity by burying it within the broader term, “radiation.”
We proton ambassadors fume when negative and inaccurate comments are made about it, and so we should. But the bigger problem is that publications and medical professionals usually say nothing at all, as if PBT were non-existent. This makes proton therapy invisible to most people. And the resulting tragedy is that patients unaware of proton therapy cannot even consider its remarkable benefits.
Love me, hate me, but please don’t ignore me
Astonishingly, even after more than a quarter century of successful use in the treatment of cancer, proton beam therapy still suffers from a severe identity crisis. Despite its accelerating proliferation, it may well be the best kept secret for cancer therapy. Why? Among other reasons, PBT remains a victim of rampant errors of omission.
It would be great if more people in the media and medical community praised proton therapy’s unique benefits at every opportunity, but this is relatively rare. The next best scenario, albeit a distant and counter-intuitive second choice, would be mentioning PBT in a negative context. This occurs mostly in fake news, editorials disguised as news, and blatantly biased reporting—all also relatively rare. Relative to what?
More prevalent and far worse than good news or even bad news is no news. The silent treatment. Lack of any mention whatsoever results in invisibility. Tragically, this remains the current plight of proton therapy. Far more often than being praised or panned, proton beam therapy is not acknowledged at all. Not by the media, not by medical publications, and not by doctors—most notably urologists.
It’s as if it doesn’t even exist. Here are two recent examples:
Proton beam therapy IS radiation
Even when radiation therapy is the topic, proton is absent from the discussion. As just one of many examples, consider this article from the Prostate Cancer Foundation. In the context of discussing radiation for prostate cancer it purports to answer the question, “What is Radiation Therapy?” Clearly proton therapy, along with conventional radiation and brachytherapy, should be part of the discussion.
The article begins with this definition: “Radiation is the strategic use of ionizing radiation or photons to kill cancer cells.” In my high school English class this definition would have earned a failing grade simply because you cannot define “radiation” by using the word “radiation.” Radiation is radiation is radiation. But let’s set the circular aspect of their definition aside and consider how a typical reader might interpret it as stated.
It all depends on how you read the “or.” Is ionizing radiation the alternative to photons? Or is it the equivalent, as in dried grapes or raisins? The latter could easily be understood to make radiation synonymous with conventional photon (x-ray) radiation, when in fact ionizing radiation is a broad category including photons, protons, and more. The “or photons” part of the definition is unnecessary, misleading, and confusing at best, and it helps bury protons even further into obscurity.
PBT is EBRT … or is it?
The second section of the Foundation’s article describes External Beam Radiation (EBRT). Giving me false hope of at least an honorable mention for PBT it correctly begins, “There are many types of EBRT, each with its own advantages and disadvantages.” But proton’s not even mentioned. A squandered opportunity to describe how the Bragg Peak phenomenon allows proton therapy to spare healthy tissue.
Could it be in their linked article specifically focusing on EBRT? Nope. Not there, either. Each of 3DCRT, IMRT, and IGRT has a bold heading and a lengthy paragraph. But PBT, unquestionably a unique form of EBRT, was not mentioned even in passing. After all, radiation is radiation.
Next, three categories of treatment duration for EBRT are explained. Conventional, moderate-hypofractionation, and ultra-hypofractionation (stereotactic body radiation therapy, SBRT) are described nicely. It appears to be sufficiently detailed and definitive, but again there’s no mention of proton therapy, which is delivered in all durations.
Searching in vain
Photons, EBRT, brachytherapy, LDR, HDR, hormones … it’s all there. Surely the Foundation will devote equal time to protons somewhere. They ignore PBT in the main article and even in the linked one on EBRT, so I set out to find where they do discuss proton therapy.
Still hopeful, I used their own search tool at the top of the Prostate Cancer Foundation Page. Upon entering “proton” as my search term I was offered links to pages containing “prolong,” “protocol,” and “photons.” Not proton. Apparently “proton” does not exist anywhere on this entire website.
In contrast, type “photon” as a search term and the first entry is “… use of ionizing radiation or photons to kill cancer cells …” Likewise, “seeds,” “brachytherapy,” and “EBRT” all hit the bullseye for relevant articles. Only “proton” has no target to hit on this website.
Another error of omission
The Prostate Cancer Foundation’s website is merely one example of failure to provide complete information to patients, and they have a lot of company. I’ll give you just one more example, the one that inspired this blog post. The article published on the UroToday website is called “ESOU 2019: Modern Radiotherapy for Prostate Cancer Treatment,” presented by Dr. De Meerlander, a radiation oncologist.
The second paragraph gave me hope that someone else was finally going to acknowledge the identity crisis facing proton therapy. With laser-like focus on the issue at hand, he begins, “Unfortunately, when radiotherapy is discussed for prostate cancer, it is all lumped together in one general category ‘radiotherapy.’ ” Yes! That is spot-on and most unfortunate, especially for PBT. I believe this “lumping together” is one of protons biggest identity problems.
He correctly continues, “… there are drastic differences in the radiotherapy given …” Yes! Let’s talk about that! The differences between proton and conventional photon (x-ray) radiation are not widely understood, mostly because few sources discuss PBT at all. So now, I expected, a credible unbiased source will finally highlight how proton therapy is different. But that was not part of the discussion. The word “proton” does not appear even once.
An incomplete conclusion
Dr. De Meerlander’s wrap-up is accurate, but incomplete. He reminds us that in order to make appropriate comparisons “when talking about RT” we must “always know the radiation dose, the schedule and the specifics of the modality.” Well, shouldn’t those specifics have included some mention of the remarkably unique and beneficial characteristics of proton therapy?
His final words are, “Radiotherapy for the prostate is rapidly changing!” And he’s right. Too bad he omitted one of the most remarkable innovations in radiotherapy. Maybe someone should remind him to remind others that proton therapy is cutting-edge radiotherapy, and it is leading the way.
To be sure, both articles I mentioned here are useful and informative. They’re not fake news, biased reporting, or editorializing. I presume that their authors are dedicated with only pure motives. The sad truth is that they, like most of the population, probably do not think of proton therapy at all, not even in the specific context of radiation therapy for cancer. It just doesn’t occur to them, so of course they don’t mention it.
Maybe silence is sometimes golden. No news might be good news. But I stand by my earlier statement: No news is even worse than bad news for spreading the word about proton therapy.
I realize I may be preaching to the choir, and that’s fine. I hope this rant will remind and inspire you, the choir of proton ambassadors, to sing loudly about the benefits of proton therapy whenever you can. Proton therapy is not the solution for every cancer patient, but each patient deserves to know it exists. If we don’t break the silence surrounding proton therapy, who will?
“… no one dare disturb the sound of silence.” — Paul Simon
Is no news worse than bad news? Email me *protected email*!
I’ve made proton predictions for the past three years and sadly, I’m not doing so well with forecasting. I did come close a couple times, but mostly not. It’s hard for me to resist making predictions because my imagination is indeed pretty good. If fact, it’s often overactive and that, along with my poor past prediction record, is reason enough to avoid making any overzealous prognostications for 2019, and I shall refrain from doing so.
If Gene Roddenberry had been my dad, maybe I would have had greater success predicting the future. The Star Trek creator accurately foresaw flip phones, video calls, location tracking, biometric measurement via handheld devices, virtual reality (the “Holodeck”), voice-controlled devices (“Alexa”), flat panel video screens, and universal translators (Google’s “translate” app), to name a few. The one I am most anxiously awaiting is teleportation. I’m not fond of flying or driving and can’t wait to issue my first “beam me up” command.
Roddenberry was a master, and we only need a quick look at my record to prove I am no Roddenberry.
First, for 2016 I predicted that insurance companies would find new excuses to deny proton coverage, but they did not. They are using the same old excuses: not medically necessary, too expensive, and experimental. Those golden oldies continue to serve insurers well, and it seems logical to expect them to continue using them as long as they do. That’s not a prediction, just a fact.
Next, you might fondly recall that throughout 2016 the U.S. Preventive Services Task Force (USPSTF) continued its 2012 “D” rating for prostate cancer screening, recommending “against prostate-specific antigen (PSA)-based screening.” Naturally, I predicted a drop in prostate cancer diagnoses from one in six or seven men, to only one in ten. My logic was that if you’re not tested you’re not diagnosed, and if you’re not diagnosed your cancer doesn’t count. The amount of cancer doesn’t change, but some of it remains unknown. But apparently there is so much prostate cancer out there that even during the dark ages of testing, the numbers reportedly remained about the same.
With one 2016 prediction I was very close. I expected to see the total demise of the beloved rectal balloon. While it is true that the SpaceOAR hydrogel has nearly eliminated use of the balloon, our inflatable friends are still hanging around the gantry, ready to burst into action if needed. Yes, even today there are some situations in which the balloon must still be used. There are a handful of reasons a patient might not be a candidate for the gel. So no, the balloon is not quite dead. Long live the balloon!
I was certain Dr. Christiaan Barnard’s great grandson would perform the first prostate transplant in 2017. To date, he has not tried it. He is apparently still waiting for the first volunteer. If you would like to step up to the plate, please let me know and I will be sure he gets the message.
And no Proton vans, either. For this 2017 prediction I was referring to vehicles carrying proton equipment to patients, not vice versa. I was convinced that by the end of 2017 we’d see fleets of PortaProton vans criss-crossing the United States, bringing proton therapy to the eagerly awaiting masses. I am tempted to renew and upgrade this prediction for 2019 or 2020, adding the inevitable element of driverless PortaProton vans, but as I said, I’m not making predictions this year.
For me and many others, 2018 was the year Amazon’s Alexa invaded our homes in a big way. I now have seven Amazon Echo devices. I’m a card-carrying member of AA (Alexaholics Anonymous). As such, maybe I went a bit overboard in predicting an Echo skill for proton therapy in 2018, but hope springs eternal and this year I predict … oops. Despite the continuing absence of a proton skill for the Echo, I still find myself saying “Alexa, give me the beam” every now and then. Just to see what happens.
Thankfully, I was wrong in predicting the weaponization of protons in 2018. However—and this is not a prediction—I think it’s only a matter of time. The military will eventually take note of the power of protons. In fact, maybe they already have. Maybe the New York Times hasn’t discovered and reported this because they (and other media) are too busy misleading the public about cancer treatment and proton therapy. Forgive my digression.
Finally, I was unrealistically optimistic about the creation of a third political party in 2018, one that focused on curing cancer and ending anti-proton discrimination by insurers and media. The election of 2016 was highly polarizing, and a Proton Party could have become a unifying option as the entire country might have rallied around a common cause. We missed a huge opportunity, but maybe it’s not too late (more on this, below).
Okay, so maybe I’m not the best authority for what will happen in the future, but surely I’m qualified to make some NON-predictions—a short list of what will not happen in 2019. Let’s give it a go.
A silver bullet cure for all cancer will NOT be discovered. Ditto for the common cold.
Controversy over whether and when men should be tested for prostate cancer will NOT end.
The DRE (digital rectal exam) will NOT be discontinued as a tool for prostate cancer diagnosis.
The DRE will NOT become the favorite diagnostic tool of an patient or doctor in 2019, or ever.
The American Urological Association will NOT give proton therapy for prostate cancer two thumbs up.
Radical Prostatectomy will NOT surrender its “gold standard” designation to proton therapy.
Private insurance companies will NOT join hands and sing Kumbaya for proton therapy.
The rectal balloon will NOT have a resurgence in popularity as men unexpectedly reject the gel.
Men diagnosed with prostate cancer will NOT happily accept it as the “good cancer.”
Bear in mind, I’m not necessarily hoping for the all of the above. Danny DeVito would make a great urologist, and guys who get the gel are being shamefully cheated out of a wonderful recurring rectal experience. But I would like to improve my prediction record, and maybe this reverse approach will have more success.
A final thought
I have one suggestion. Although there was no Proton Party on the ballot in 2018, it’s never too late. This year we should begin a grass roots effort to organize the anti-cancer, pro-proton party, and we need a candidate to lead the ticket. Do I hear you chanting, “Bob Marckini for president in 2020?”
Just to be clear, that’s not a prediction. But it sure would be interesting.
*protected email* to amuse me with your predictions for 2019. Thanks, and have a happy, healthy year!
I woke up this morning and routinely checked my newsfeeds, which include various searches for proton news. I was horrified to learn of a disastrous occurrence. I read and re-read this chilling headline several times:
Proton beam failure leaves hundreds of
child cancer patients at risk.
What? A proton beam failure? Potentially harming children? Where was that? What kind of failure? Are the children okay?
I quickly went to the full text article. I read it twice. Thankfully, there was actually no proton beam failure at all. Much to my relief, no children were hurt by any renegade proton beams.
The first paragraph accurately states the very different crux of the matter: “Hundreds of children with cancer are resorting to inferior treatment because of a failure to open two flagship specialist centres” on time in London and Manchester.
That’s quite a different story. It implies that proton therapy is the superior treatment. It states that not one, but two proton facilities will open (late) as “flagship” cancer centers. Most importantly, the children were not hurt by a proton beam failure. In fact, it was just the opposite. They were potentially hurt by a failure to provide proton beam therapy to them.
The Telegraph article carries the byline of Justin Stoneman and Henry Bodkin. They explain that many of those children might have been sent by NHS (the United Kingdom’s National Health Service) to Florida for proton therapy, if not for the expectation that the new facilities in their own country would be open for business on schedule. So the child cancer patients are now forced to consider an alternate, inferior therapy that was not explicitly identified in the article.
What a tragedy for those children. But what a relief for proton advocates who were shocked by the scary headline.
The damage is done
How many people who read that horribly misleading headline now believe proton therapy is risky business? How many think a proton beam failure can put literally hundreds of patients in jeopardy? How many readers only read the headline?
Worse yet, this damaging headline is echoed on other sites. Lifeboat.com used the exact same headline. It’s also found on English news, One News Page, Malta News, and possibly others. How hard can it be to create a headline that accurately reflects the article’s content?
This is the worst kind of irresponsible journalism. A careless headline explicitly stating the opposite of what really occurred is shameful. Sadly, it’s not the first bad headline, nor will it be the last. I recently examined another such headline in depth. That one was from the New York Times, and much of what I said about their ill-constructed headline applies to this one, so I won’t repeat myself.
I did manage to find one source reporting this important story with an appropriate headline. Pressreader.com ran it with “Children hit by delays in opening two proton beam cancer units” at the top. You’ll need a free subscription to read it there, but nevertheless—kudos to Pressreader. Although their article is nearly identical to the one at The Telegraph (which they cite), someone at Pressreader made the effort to change the headline. No byline is included, but my thanks to that responsible journalist.
Unfortunately, this is the exception that proves the rule.
In this case, the rule is exemplified by Mr. Stoneman and Mr. Bodkin. Did they read their own article? Did they intentionally mislead their readers because of a bias against proton therapy? Or did they merely neglect to give it much thought, carelessly tossing a terribly misleading headline atop an important story? Maybe they’re just not that good with words. Take your pick—it doesn’t matter. The result is the same.
A pro-proton article
I actually don’t think Stoneman and Bodkin have an anti-proton bias. I think it was just carelessness because ironically, the article is extremely complimentary and fair towards proton therapy.
They refer to the unnamed alternative to proton therapy as “inferior.” They call the two promised proton centers “flagship centres.” The phrase “state-of-the-art proton beam therapy” appears in the second paragraph. The two journalists accurately describe proton therapy as using a “high-energy beam of particles to destroy cancer cells while leaving healthy tissue unaffected.” They correctly acknowledge proton as being “particularly valuable for children, who face higher risks of permanent side effects.”
Too bad they missed the boat so badly on the headline.
The state of journalism
Stoneman and Bodkin are not atypical of today’s journalist. So-called journalism has become careless, biased, and often hasty. Stories happen at the speed of the Internet, often at the cost of accuracy and prudence. It is a challenge to sort out whether information is unbiased reporting, or editorializing disguised as news. Meeting that challenge has now become our responsibility.
In some situations the news-spin is clearly intentional. At other times—as I suspect is the case here—it can be accidental. Regardless, unless we consumers of news become highly analytical, we will be sitting ducks for misinformation. We cannot afford to be casual, trusting consumers of news. It is up to us to seek and identify the purposeful intent or accidental result of the reporter’s words.
We must analyze, evaluate, and be somewhat suspicious—starting with the headline.
What was your reaction to The Telegraph’s headline? Email me *protected email*.
One week from tomorrow is the date for my next PSA test. I know this because all my reminder systems—Alexa, Google Calendar, Microsoft Outlook, etc.—simultaneously started beeping at me today.
It’s time to prepare.
And prepare I must. For some men a PSA test is a simple blood test. For me, it is a week-long process requiring careful planning. It is more than a brief encounter with a lab tech, a needle, and a vein. It is a physical and psychological journey.
If you’re relatively new to the never-ending merry-go-round of PSA testing, you might not yet appreciate the momentous nature of this occasion and the need to manage it. With nearly eight years’ experience, I have learned exactly what should happen on each of the seven days preceding the test, as well as how to handle the time between the test and receiving the results. There is nothing haphazard about it.
You may be a PSA newbie, or perhaps you’re a PSA veteran with more experience than me. Regardless, I know of no one who has fully documented the correct approach to prepare for each test, so let’s fix that now. Here is a day-by-day checklist to manage this complex recurring event and relieve some of the stress associated with your next PSA test.
7 days prior (T-7)
Day “T-minus-seven” is kickoff day. At the outset, we must remind ourselves of the physical and mental challenges we’ll be facing. The more tests we’ve already endured, the easier this is. We remember each one as if it were only yesterday, and we know what awaits us.
Yet, despite similarities to previous PSA journeys, this trip will be unique. We are a little older, possibly a bit wiser, and have more experience to draw upon than ever before. We’ll spend day T-7 reliving our past PSA trips, mulling over them continuously throughout the day.
It is a day of introspection, but we cannot go it alone. Yes, on this day we must also rally the troops. It’s time to make sure our team is aware that it’s that time again. We need them to be ready to provide support and encouragement as our anxiety ebbs and flows.
We awaken our nearby friends and family to this need by taking every opportunity throughout the day to casually and cleverly insert a mention of the upcoming test into normal conversation. If you’re at coffee shop with a friend and the server asks what you’ll have, say “I’ll have anything that can lower my PSA! My test is just a week away, so make its strong!” Respond to any “hey, how’s it going” greeting with something like, “Not bad, but ugh, it’s PSA time again, and you know what that means!”
Of course, only those in our shoes really do know what that means, but that’s okay. An active cheerleading section is indispensable, even if they don’t personally know how it feels to play the game.
6 days prior (T-6)
On day T-6 we commence the daunting Discussion of Hypotheticals, or the DOH. This is a technical phrase for what can more simply be referred to as the “what if” game (a.k.a., the WIG). We never know what our PSA result will be—which, after all, is why we do the test. So we play game.
Thankfully, the WIG has only three possible outcomes: Our PSA may be higher, lower, or exactly the same as it was last time. We must anticipate our reaction to each result to avoid the last-minute stress and frenzy of being caught unprepared.
On T-6 we begin the DOH by first considering how we’d react to the ostensibly easiest outcome: a lower PSA. Of course, this is what we all want, and we should be able to rejoice with this outcome. But upon further reflection we realize there’s lower, and then there’s loooooooower. It’s not necessarily as simple as it appears at first glance.
Nevertheless, down is always better than up, and we are justified to feel at least some relief, if not jubilation. A respectable drop is the best possible outcome. But defining “respectable” is simultaneously subjective and statistically determined. It’s part art, part science.
If we expected or needed our PSA to be lower, we might view a very slight dip as less than respectable—insufficient to engender confidence. Why didn’t it drop more? We might worry that it was within the margin of error, maybe not really lower at all, and possibly even a bit higher. I know some men who would immediately re-test.
Others would happily accept any dip at face value, and many would celebrate. The key is to know in advance how you would respond, and avoid being caught unprepared when the results are in.
5 days prior (T-5)
Next, we focus on outcome #2. How should we react if our PSA remains unchanged? If it’s been acceptably stable for some time we can just relax and move on. If our PSA is already wonderful, we can have a small celebration. Even if our PSA was not-so-hot, we can at least be glad it held steady.
For many of us, post-radiation PSA levels are a roller coaster ride of ups and downs. If you’re on that ride (as I am), an unchanged level means we must wait another three, six, or twelve months to look for the next shift. It’s kicking the can down the road. It can be frustrating, but it’s better to look on the bright side and view it as a no-news-is-good-news reprieve.
In summary, if our PSA doesn’t change and we’re expecting a decline, we can be mildly disappointed but unworried. If we are fearful of a looming increase, we can be slightly relieved and postpone any further concern until next time. If our PSA graph has been relatively flat for quite a while, we probably expected more of the same and will be unphased.
It’s all about our pre-test expectations.
4 days prior (T-4)
This is the toughest day. There is always a chance we might have to face a higher PSA, and we better be prepared. Even though we’re aware of the benign reasons that can explain a jump, we’re not going to like it. Sure, it could be the result of prostatitis, of healthy prostate tissue producing PSA, or of prostate agitation before the test. It could also be little more than the infamous “PSA bounce” that sometimes follows any kind of radiation, which ironically might actually be a good sign.
There’s no denying that “up” always feels bad, but what does it really mean? Again, it depends. Will we be rushed into the ER for an emergency prostatectomy? Not likely. Will we need some additional testing—much improved in recent years—to see if the cancer’s back? Maybe, but not necessarily. It depends partly on prior PSA test results. Will we die tomorrow? Probably not, unless you’re a very poor driver.
About the only nearly guaranteed result of an elevated PSA is a lovely conversation with our friendly urologist and/or oncologist. Mine are both nice guys who seem to genuinely care about me, so this is not too bad. Beyond that, who knows. Living with uncertainty is something we all need to become better at. It’s the nature of life. And even if our PSA goes up, we’ll probably live another day to wax philosophical.
3 days prior (T-3)
With only three days to go, we must turn our attention to the physical side of preparation. The crux of the matter is that any stimulation of the prostate can cause our PSA level to be higher. If our PSA were to go up, we don’t want to be left wondering if it was merely because of some inadvertent prostate agitation. We all want meaningful results.
What stimulates the prostate? Sexual activity is at the top of the list. So beginning on day T-3, no sex—neither mental nor physical, and neither solo nor with others. No looking at artistic magazines for men. No lustful looks at your wife, who must cooperate by wearing only the most unflattering outfits during these few days. She’s part of the team, and everyone plays a role.
For some of us, this particular issue is not a problem. At some age, for one reason or another, that ship may naturally have sailed. For others of us, hormone therapy may have knocked out the temptation, at least temporarily. But if you still ever think about sex even briefly, for these next few days—just don’t.
2 days prior (T-2)
On day T-2 we continue our physical preparation by avoiding anything that might vibrate near our mid-section. Steer clear of motorcycles, bikes, airport massage chairs, hotel vibrating beds, horses, tractors, riding mowers, F-350s, treadmills, trampolines, and row 30+ on any commercial aircraft.
It’s also wise to avoid using anything that might rattle other parts of your body because the vibration might travel through your skeletal system to the prostate area. Don’t use a chain saw, lawn mower, food blender, electric shaver, electric toothbrush, or shotgun. The list goes on, but you get the idea.
1 day prior (T-1)
With only one day to go, we have a single dominating concern: protect the prostate at all costs. Treat it like a thin glass vase. Make sure to sit only on the softest cushions, never on a hard surface. Always sit softly—don’t plunk down. If possible, stay in bed all day. If you have one, lock yourself in a padded room. We can’t be too careful.
Don’t move at all unless absolutely necessary. Eat soft food to avoid the skeletal stress of chewing. Drink through a straw to avoid the strain of lifting a glass. Allow others on your support team to bring food and other essentials to you, rather than taking any movement-related risks. Leave nothing to chance.
Protect the prostate.
If possible, schedule your test for the early morning so you can quickly return to the business of life—mowing the lawn, walking the dog, and hugging loved ones. The pre-test physical regimen is rough, and the sooner it’s over, the better.
It’s also a good idea to drink lots of water before your test, as I am reminded each time by the lab tech. She smiles and asks me whether I’ve “plumped my veins” with plenty of water. I’ve learned to do that, and it generally seems to help her strike oil on the first try.
1 day after (T+1)
Actually, this begins as soon as the blood is drawn on PSA-day. Immediately after the test we can expect to feel an odd combination of relief and trepidation. We’ve made it through the blood draw, we protected the prostate, and we are ready for any possible outcome. Good. But there’s always an underlying fear of the unknown, fear of the future. And that’s okay, too.
Now we wait. What we need are distractions to stop our overactive imaginations. Movies, meals, family, friends, and maybe even Facebook are there to fill our time as we await the results. Use every diversion available and have some fun.
2 days after, and beyond
We made it. Another PSA test is done. Now what? We’ll get the results, and we already know how we’ll react. It’s back to the business of life.
Regardless of the test results, life goes on until it doesn’t. During the final years of his 101-year life, my mother’s fourth husband began each morning declaring, “I made it!” I’m now only 68, but I already feel the same way.
Cancer has a way of radically changing our perspective forever, at any age. If it isn’t cancer, there are plenty of other calamities in life that can do the same. I had cancer, but I know many others who’ve had much worse. Being their friend helps me remain grounded and reminds me to appreciate each day.
Admittedly, some parts of this Official PSA Planner might be just a tad (shall we say) exaggerated, but that’s okay. I have found it helpful to mix a little humor into life’s challenges, and this is no exception. I hope you can benefit from that approach, too.
We’ll both be embarking on yet another PSA excursion soon enough. Maybe next time we can breeze through it a little more easily. In the grand scheme of things, a PSA test isn’t worth getting all worked up about.
Just do your best to wake up tomorrow with a smile, saying, “I made it!” Then hop onto your motorcycle, rev your chainsaw, swim some laps, or cut a cartwheel.
Get busy. Seize the day.
How do you get ready for a PSA test? *protected email* your tips. Thanks!
Remember when it was that simple? Not so these days, especially since my encounter with cancer. Since then, a different set of brain synapses trigger when I hear that question. It actually sounds different now, and the days of mindless automatic answers are gone.
This came into focus for me when a friend recently asked me in an email, “How are you, Ron? Really.” The last word was a tipoff. She was not looking for a rote “fine, thank you” answer. It started me thinking about the many ways I could respond to that seemingly simple question.
Cancer or not, as we move through the decades of life, the implications of that perennial question become more complex. In the second half of life our answering options range from a simple “fine, thanks” to a full medical report. Our challenge is to pick the one that matches the intent of the questioner, providing just the information wanted—no more and no less.
An after-cancer guide
It’s a tricky proposition but fear not: you can use this blog post as a guide. Put a link in your smart phone. When you are hit with this challenging question you can hold up your index finger to buy an extra minute, click the link for this guide, and then confidently give precisely the kind of answer the asker was seeking.
First, we’ll outline four main types of answers. Then we’ll look at some common situations in which we must choose the appropriate reply to the big question …
How are you?
Answer Type #1 is the easy one: “Fine, thanks.” It provides no information whatsoever and might not even be true. Fine or not, it doesn’t really matter. The point in using this answer is merely to acknowledge that we heard the question. With a two-word answer, we send the message that we regarded the question as merely a salutation, and not really an information-seeking question at all. For convenience, let’s call this the EZ answer.
Answer Type #2 is a small step beyond EZ, so we’ll call it EZ+. It adds some nuance, but still doesn’t provide much insight. Rather than a bland, meaningless “fine,” we can choose from a list of short answers indicating a degree of wellness. Phrases like “absolutely great,” “pretty good,” “I’ve been better,” “getting along,” “not too bad,” “fair to middling,” and “good enough,” are common examples. EZ+ includes the ever-popular but overly optimistic “couldn’t be better,” and the needlessly glum “getting by,” both of which are generally far from the truth.
If you’re creative, you can use an EZ+ answer as an opportunity to exhibit some cleverness, or maybe to establish an identity. There’s Dave Ramsey‘s signature response, “better than I deserve.” A former employee of mine adopted “sunny side up” as his stock answer. You might already have your own favorite rejoinder. I know several people who regularly use “I’m still vertical,” so avoid that one if uniqueness matters to you.
Answer Type #3 is still brief, but it’s more informative. It provides a headline for the single specific item topping your health-news-of-the-day. CNN and Fox would call it “breaking news.” It’s mostly just a teaser, promising “details at 11.” Let’s call this one the T-ZER answer. T-ZERs open the door for the asker to request more information … or not.
Examples of the T-ZER include “I have a migraine,” “I stubbed my toe,” “my shoulder is killing me,” “better than before,” “my back is out of whack,” “my ear is barely whistling,” “I bruised my knee,” and “my tennis elbow’s acting up.” You can also allude to specific diagnostic tests, but without giving the details, as in “my PSA is steady,” “my scan looked okay,” and “my cholesterol’s up a bit.”
Answer Type #4 is full disclosure—all the health news worth reporting. Hardly anyone wants this, but when it’s warranted it’s important. It does not necessarily include specific lab results, but it must at least provide a clear indication of the significance of the underlying numbers. While still conversational, this type of answer is a reasonably complete Medical Disclosure, so we’ll call it the MD answer. As a happy coincidence, MD also stands for medical doctor— precisely the people most likely to want this level of detail.
A typical MD answer would be “Well, my PSA dropped again, my cholesterol is still fine, thyroid’s fine, but I do seem to run out of energy late in the day.” An even more specific version of this is “My PSA fell to 0.8, my total cholesterol is a solid 180, TSH is still barely normal, but every other day around 5:00 I run out of steam and sometimes get an early evening headache, probably from allergies.”
A compulsively thorough MD answer sounds like “My ears are ringing, my ocular floaters are distracting, I can’t breathe through my right nostril, I’m urinating pretty well and not too often, my PSA is steady at its nadir, my TSH is just under 4, my back aches, my sexual function is about what you’d expect for a man my age, and my bowel movements are stellar. And how are you?”
So with all these options – the EZ, EZ+, T-ZER, and MD answers – how do we choose? Through example, the following scenarios will help you respond appropriately each time you are confronted with another “how are you.”
You’re in line at Starbucks. A friend is right behind you. You don’t realize she’s there until you hear her call your name, immediately followed by the question at hand. “Hey, Ron! How are you?” This and similar chance encounters are clear-cut occasions for the EZ answer. No question about it. She’s not asking for your PSA.
One exception is hanging around the water cooler at the proton center. In that environment, a patient-to-patient greeting has a deeper implication. If you have begun to know the person reasonably well, use the EZ+ or T-ZER to show some warmth and to encourage more discussion. After all, wellness is the theme there, and it’s the reason you’re both hanging around.
You sit down at the table to dine with some friends. It could be at your home, theirs, or a restaurant. It might be one-on-one, couples, or a group. Wherever and whoever is included, someone will surely start the ball rolling with the time-tested ice-breaker, “How are you?”
Now, this is a little different than the coffee encounter. It is planned, and you have more time. You have made a commitment to spend one or more hours together, which indicates that your relationship is more intimate. These people are part of your life, and EZ won’t do.
Depending on the nature of your history with them, you can respond with either the EZ+ answer or the T-ZER. The former can be sufficiently friendly and conversational, while still providing an easy exit from further health talk. But if you’re dining with fellow proton alumni or cancer patients, the T-ZER would allow a nice segue into some detailed health talk—possibly a full MD discussion. So only offer a T-ZER if you are willing to risk moving into some serious subject matter.
When you finally make it into the examination room one-on-one with your doctor, it’s MD answer time. In fact, you should prepare your answer in advance and possibly have notes. Lay it all out there and let ol’ doc sift through the detail.
If you have an ongoing, friendly relationship with your doctor, it’s fine to precede your MD answer with an upbeat EZ one. But then move along quickly, without pausing in between. You have your doctor’s attention at that moment, so make the most of it.
What about those greetings from folks we’ve never met? In any venue, how do we respond when greeted by a total stranger? Their question might be a variation of the standard one, but whether they ask “how’s it going,” “how’re you doing,” or simply “how are you,” our response to a stranger should be different. In this case, we must proceed with caution.
In general, it’s prudent to take it down a notch. Offering too much information too quickly is inappropriate at best, and at least a little weird. If the usual answer to a known person would be EZ+, a simple EZ will suffice. The stranger behind you in line at Starbucks wants no more than an EZ answer (unless the situation is one of the exceptions described below).
Likewise, dial down a T-ZER to an EZ+. And above all, never give a full-blown MD answer to a stranger, at least not right away. Start with any other response. Then size things up and see where it goes. A new nurse in a doctor’s office might eventually warrant the MD response, but probably not in the first few minutes. If you’re optimistic, toss out a T-ZER. Otherwise, you’re not obligated to serve up more than an EZ+.
There are special situations in which our underlying motivation influences our answer. Normal protocol as described above might not apply when we have an ulterior motive or a hidden agenda. We might then use our answer in a benign, but productively manipulative manner.
Let’s return to the stranger behind you at the coffee shop, bar, hotel lobby, grocery store, or airport. What if you’re solo and hoping to strike up a new friendship? If you hear “hey, how’s it going,” you turn around, and the chemistry is instant. What then? If you answer creatively, perhaps this unexpected encounter could become more. It’s definitely time to elevate your EZ answer to an impeccably delivered EZ+, followed immediately by a sincere “… and how about you?”
Conversations with support personnel are also special situations, whether online or in person. This includes a chat to solve a computer problem, an interaction with an airline rep about a canceled flight, and a request to a banker to reverse a late fee. In situations like these, your chance of success increases if you humanize the exchange. These people tolerate a lot of undeserved hostility and will quickly become your ally once they see you’re different. Your warm EZ+ answer to their scripted question, and a genuine expression of interest in how their day is going is your ticket to a pleasant and successful outcome.
As one final example of an endless variety of special situations, consider your work environment. When your boss asks “how are you,” it’s important for you to focus quickly. It’s a golden opportunity for posturing. Your answer should subtly convey that your boss’s well-being is far more important than yours. “I’m okay, thanks, but how’s your unimaginably difficult and stressful day going, and how can I help?” BOOM! Ten brownie points in ten seconds. Good move!
As cancer survivors, we all need a little sympathy now and then. For us, any “how are you” is an opportunity to play the wild card. Friend or stranger, coffee shop or doctor’s office, whoever and wherever—if we want some sympathy we can always get it. When we’re asked “how are you” all we need to say is, “Pretty well, other than keeping an eye on that cancer.”
It always works.
So may I ask, how are you? *protected email* to send me your answer or comments.
Happy, sad, good, or bad—it’s all in the words we choose to use. Thanks to Kaiser Health News reporter Jay Hancock’s choices, readers of the New York Times might be led to believe people don’t want proton therapy and that daring to provide it is therefore unwise. His April 27, 2018, unhappy headline declares: For Cancer Centers, Proton Therapy’s Promise Is Undercut by Lagging Demand.
Undercut. Lagging demand. Sounds bleak.
Although the article is not “fake news,” the overall feeling conveyed is one of needless negativity rather than optimism, beginning with the headline itself. Hancock could have used more hopeful terminology but unfortunately chose the opposite. From a professional journalist—a wordsmith by trade—we must regard this as intentional.
The tone of a headline largely determines the reader’s mindset for interpreting what follows. A predisposition for good news or bad can be craftily created by a pro. “Undercut” and “lagging demand” create a mindset of low expectations, and with those words Hancock quickly readies his readers to view any news as bad news.
Even with much the same content, a more upbeat headline would have prepared readers to find the good news in the article. Here are a few examples of similar, but hopeful headlines Hancock could have used, had that been his intent:
Doctors and Insurers Lag Behind Cancer Centers in Promoting Proton’s Promise
Cancer Centers Commit to Proton Therapy Despite Many Challenges
Despite Lagging Support from Doctors and Insurers, Patients Increasingly Demand Proton Therapy
Undaunted by Biased Opposition, Cancer Centers Embrace the Power of Protons
Despite Obstacles, Modern Cancer Centers Beam into the Future with Proton Therapy
With Few Exceptions, Cancer Centers Succeed in Modernizing with High Tech Proton Therapy
Hancock understands the power of a headline. Had he wanted to educate and excite his readers about a promising cancer therapy, he could have done so. He missed an opportunity to encourage naysayers to be more open-minded about an advanced treatment that can help many of us. Instead, he chose to broadcast a warning about the perils of investing in proton therapy—often (he says) doomed to failure.
Jay Hancock wasted a chance to use the power of his pen to help, not impede the advancement of cancer therapy.
And it’s not just his headline. Two seemingly innocuous accompanying photographs visually convey a subtle negativity. One shows an empty gantry and a barren treatment table wrapped in contractor’s tape with a cautionary warning. Another shows an unmanned roomful of unidentified plastic-wrapped equipment roped off with prominent yellow tape in the foreground loudly repeating “CAUTION CAUTION CAUTION CAUTION.”
Why not show a patient in the gantry ready to receive a life-saving proton beam? How hard would it be to find a photograph of a team of technicians actively engaged in managing a cyclotron, the miraculous engine of proton therapy? Again, this choice of imagery can be no accident. Hancock uses it to bolster his headline’s objective.
He hands us a pessimistic headline supported by negative imagery, but that’s not all. There are flaws in the article itself.
Doomsaying without data
In various ways, Hancock repeatedly refers to “the patient shortage” but provides no supporting data, nor does he reference or link to even one data source. He just blithely infers a lack of demand from the fact that some proton centers have closed or had financial difficulty. He completely fails to explore alternate reasons and jumps directly to his biased inference that patients don’t want proton.
In my home state of South Carolina, I can think of several nearby local coffee houses that have closed. Does this indicate a lagging demand for coffee? Maybe, but could it be that those establishments were poorly managed or underfinanced? I do not have a business degree, but I am willing to bet there is a long list of potential reasons a business—any business, even a proton center—might not make it.
Hancock’s gloomy outlook is encapsulated in a single bewildering sentence in which he first tells us that “most of the proton centers in the United States are profitable.” BUT—unwilling to allow a note of optimism to be left standing—he neutralizes the good news by concluding with a contradictory reference to an industry “littered with financial failure.”
His statement is oxymoronic. Success filled with failure? We are left to picture a proton wasteland covered with discarded cyclotrons, reminders of a misguided industry.
A lack of demand is the cornerstone of Hancock’s article, but he never tells us exactly what constitutes a shortage. What number of cancer patients who could benefit from the precision of proton therapy is too few? How many are needed to justify investment in an advanced technology offering “pinpoint precision,” as he correctly describes proton?
Let’s look at some actual numbers with a source we can reference: The National Cancer Institute. For 2018, the NCI projects 1,735,350 new cases of cancer in the United States. Their estimate includes cancers of the breast, lung, bronchus, prostate, colon, rectum, skin, bladder, kidney, pancreas, thyroid, liver, and others. There is clearly no shortage of cancer. Is there a shortage of patients who would want the precision of proton therapy?
I could find no numbers indicating how many newly diagnosed patients are estimated to receive which type of treatment, nor how many are unlikely to receive treatment at all. But with nearly two million new cancer patients this year, is it unrealistic to expect 300—a mere 0.01787 percent of the 1,735,350—might want proton therapy near Washington, D.C.? Maybe so, Hancock warns Georgetown University Hospital, where they expect to treat 300 patients annually in their new proton unit.
Demand versus desire
We know there is at least some interest in proton therapy—patients are undeniably being treated with protons every day, worldwide. For the sake of argument, let’s assume the demand is indeed low compared with alternative therapies. Is that a showstopper for the advancement of proton therapy? What might it really indicate?
For starters, it could mean proton therapy is precisely what many cancer patients would want, but either they never heard of it or it’s just too expensive.
I drive a Ford Escape, which transports me with reasonable safety, comfort, and convenience. But I just learned about Rolls Royce’s Cullinan SUV, and I must admit I want one. Sadly, I cannot afford it. I suspect demand—not desire—for the little known, high-priced Cullinan is lower than for my Ford, which I’m sure comes as no surprise to Rolls Royce. Yet even with that awareness, they feel justified in making their SUV.
Proton beam therapy has been referred to as “The Rolls Royce of Radiation Oncology.” Like the Cullinan, it’s not widely known and there are cheaper alternatives—inferior in some circumstances, but not in all. Sometimes a more affordable Ford F-150 or a Honda Accord is a better choice than a luxury SUV. In some cases, IMRT, surgery, or active surveillance may be more appropriate than proton therapy. They all have their place, with differing levels of desire and demand.
Hancock targets “lagging demand” in the headline and therefore should have fully explored this issue. If demand is lagging, we need to understand the reasons. Why aren’t more patients choosing it?
There are three likely reasons people might not buy a Rolls Royce Cullinan. They may not know about it, they might not be able to afford one, or an SUV might not address their needs. The same reasons apply to proton therapy. If doctors “hesitate” to tell patients about it and insurance companies deny coverage to pay for it, then even when proton therapy is the best treatment option, potential demand is stifled.
Hancock lets his readers assume that demand for proton therapy is lagging simply because patients reject it. More accurately, he should clearly explain that demand is stifled because most patients never heard of it, many doctors don’t inform them about it, and insurers often won’t cover it. The truth is that patients who overcome those obstacles often do choose proton therapy.
Hancock leaves us wondering why more doctors don’t discuss proton therapy with their patients. Nor does he explain why more insurance companies don’t reimburse patients for proton therapy, as they do for other costly major medical expenses. He lets his readers infer that proton radiation must be ill-advised if doctors won’t suggest it and insurers won’t cover it. After all, they’re the experts.
Let’s at least postulate some alternative reasons doctors and insurers aren’t on board. Then maybe we can more intelligently pursue solutions.
Could it be that doctors who “hesitate to prescribe it” have a vested interest in alternative therapies? They might personally perform surgery, IMRT, or another competing treatment, or they might have a financial stake in a facility that does. So maybe they understandably feel threatened by new competition. Or maybe they feel intimidated by a new technology they haven’t investigated. It might feel safer to recommend only what they have done for decades with reasonable success, and not even mention proton. Don’t rock the boat.
Insurance companies commonly use three falsehoods as excuses to deny coverage for proton therapy, tragically forcing patients to divert energy from battling cancer to fighting for reimbursement. They deny claims because proton is experimental, not medically necessary, or no better than cheaper choices. I and many others have already discussed these false claims at length. Suffice it to say here that private insurers don’t want to pay the bill for proton therapy and routinely deny coverage because—so far—they can.
We turn to our doctors for objective guidance. We pay for health insurance to provide financial help with major medical costs. When proton therapy is prejudicially excluded, potential demand will be artificially stifled, to the detriment of patients.
A medical arms race
Hancock is apparently wary of the rapid pace at which cancer centers are adding proton capability to their arsenal of cancer-fighting tools. He compares this trend to an arms race, and the extremely negative connotation this carries is again no accident. The public will predictably react subconsciously, if not consciously with a nearly unanimous, “Yikes! We surely don’t want that!”
Ironically, if his analogy were valid and fully understood, it would have the opposite effect. In a military arms race, those in the game do not scramble to accumulate ineffective weaponry. They do not stockpile slingshots and BB guns. They build the most advanced weaponry within their capability. That’s how they win the race.
In the realm of battling cancer, proton therapy is among the most advanced anti-cancer weaponry available, as even Hancock admits. And because there is competition for patients in the business of medicine, cancer centers must consider offering proton therapy. In the United States, 27 facilities now do, and the number is rapidly growing.
Why? Because to succeed, a competitor must offer the best, most up-to-date treatment options available, or risk becoming outdated. Georgetown University Hospital—Hancock’s initial target—added proton therapy to their arsenal for that reason. So did Beaumont Hospital near Detroit, and many others. Good for them.
We may not want to see another military arms race that might lead to an unfortunate war, but a medical arms race to win the war against cancer is exactly what’s needed.
What about profit?
But don’t proton centers need to be profitable? Hancock claims that “nearly a third of the existing centers lose money, have defaulted on debt or have had to overhaul their finances.” He doesn’t say how he arrived at this number, but for the sake of argument let’s assume it is true.
We can concede that making a cancer center fiscally sound is not easy, nor guaranteed. It’s a tough business—probably for any medical facility, not just proton centers. Hancock ignores this possibility and lets readers assume that only proton centers face financial challenges.
One way or another, every business must eventually take in more money than is spent. This includes coffee houses, brick-and-mortar stores, online merchants, and cancer centers. But it doesn’t have to happen overnight, and it’s often worth the wait.
Consider Amazon.com, an innovative, aggressive, trailblazing online merchant. Amazon went public in 1997, lost money for years afterward, and earned very little for even longer. They are now doing more than fine, thanks to their founder’s conviction that investing in future growth is more important than short-term gains and will pay big dividends in the future. It takes time for new ideas to take hold.
If a proton center has a financially rough ride for a while, that’s okay. If they have the means to survive the growing pains, they can ultimately succeed along with the patients they serve. Sure, it would be easier with more support from doctors and insurers, but it’s worth the fight regardless. It’s how medicine advances.
The biggest problem
Dr. Peter Johnstone from Indiana University’s closed proton center has some opinions about running such facilities. Hancock quotes him to support his “lagging demand” premise. Johnstone says, “The biggest problem these guys have is extra capacity.” This brings to mind empty gantries like the one depicted in Hancock’s article.
I disagree with Johnstone. Extra capacity may sometimes be a problem, but it’s not the biggest one. Why would Jacksonville’s University of Florida Health Proton Therapy Institute—a well-established pioneer in this field—invest millions to expand their facility? Empty gantries? Too few patients? Too much capacity? Clearly for them, with patients from all over the world coming there for advanced proton therapy, too little capacity was the bigger concern.
In fact, if the real problems were effectively resolved, I suspect that too much capacity would rarely be a concern. We’ve now discussed at least three such problems I’ll repeat in no particular order. They are (1) lack of insurance coverage for proton therapy, (2) lack of support from doctors who don’t understand proton or have conflicts of interest, and (3) negative bias in the media (ahem).
Eliminate those obstacles, educate the public, and then watch what happens.
The closing statement of Jay Hancock’s editorial-disguised-as-news leaves us in an utterly hopeless place. Alas, proton therapy cannot succeed without “a huge supply of patients.” This is again a quote from Dr. Johnstone, perfect for Hancock’s dismal wrap-up. How huge is huge? Doesn’t matter. “Huge” sounds unattainable, and the implication is that we’ll never get there.
Hancock begins by targeting Georgetown University Hospital as the latest misguided entrant into the so-called medical arms race. I wish he would have ended his article with a quote from Georgetown’s Pam DeLongchamp, one of their nurse navigators. She is excited about proton therapy and its recent advances. She also understands the challenges. When asked by Nurse.com for her words of wisdom for other nurses, she said:
It is an exciting time to be an oncology nurse with new therapies and emerging technologies. Along with this progress comes the ongoing need for continuing education making the time to gain and share knowledge as important as ever. Oncology nurses have many avenues available to obtain this information ranging from online resources to attending meetings and conferences.
This observation applies not only to the many invaluable oncology nurses. It is also good advice for doctors, insurance companies, and Jay Hancock. They should all make time to gain and share knowledge about the latest medical technology—including proton therapy. There’s no excuse. As Pam DeLongchamp said, there are many avenues available.
Just be sure to consider the source and watch out not only for fake news, but for editorials disguised as news.
Is it fake news, biased reporting, or something else? *protected email*
At the end of this post I’ll discuss the important exceptions that make the rule. What rule? We proton patients are a happy bunch—maybe even happier than the rest of the general population. This is a non-scientific personal observation based on more than seven years of being a prostate cancer proton patient.
The notion occurred to me after a recent trip to my treatment alma mater, the University of Florida Health Proton Therapy Institute in Jacksonville. I visit UFHPTI several times a year to dine with patients at their Wednesday lunches, to speak at their prostate cancer clinics, and for my own annual checkups.
Jacksonville is a five-hour drive, and as a devout homebody and recluse I am loathe to leave home for any reason. So why repeatedly make the trip? At this point it’s completely optional and routine because thankfully, I’m doing fine. And although I certainly enjoy the company of my Florida oncologist, my friendly local urologist—just a 30-minute drive—is perfectly capable of effectively executing my annual DRE.
So why make the trip? The answer is simple, if not obvious: I like being around happy, upbeat people, and I find them in abundance at UFHPTI.
On the surface, this makes no sense. After all, this facility is populated by patients who without exception have had some very bad news. Who in their right mind can be happy about a cancer diagnosis? I wasn’t, and I’m 100% sure that’s universal.
Then how, under such seemingly dire circumstances, can we be so happy? I have a little insight by virtue of many conversations with others in my shoes. And there’s also the guy who is literally in my shoes. So I’ll speak for myself, and you can *protected email* if I’m also speaking for you.
I am a member of this group, and a happy guy. This was also true before my cancer diagnosis. Cancer is not the reason I’m happy, but it has undeniably changed my perspective on life.
I have become more aware of the many things to be happy about. This may sound a bit trite, but it is the crux of the matter.
Before cancer I was happy enough, but not particularly focused on that feeling. I was just living my life, day by day, without paying much attention to the big picture. Now, with a recalibrated perspective I am laser-focused on the grander scheme of life. This has not only made me happier, but also more aware of being happy.
Let me tell you why.
I appreciate life more
“You have prostate cancer.” Yikes. Was he talking to me? At that moment, at age 60, I instantly understood—I mean really understood—I could die tomorrow. Or today. Furthermore, I became acutely aware that I not only could, but surely would. This was not new information, but only then did I fully comprehend it.
I also quickly realized I still had no idea whether cancer or something else would eventually cause my inevitable demise, but the new insight lingered. From that day forward there would be a lot less lumbering through life. Without knowing it, I could be in the path of a runaway bus just around the corner, any time, any day. Best to take nothing for granted.
So how does this make me happy? With this insight comes a newly enhanced daily pleasure. I begin and end each day in a comfortable bed with the love of my life at my side, and my loyal canine companion at my feet. I am hyper-aware of their timelines as well as mine, and smile each morning at the sight of them.
This brings me a peaceful contentedness, and makes me happy.
We cancer patients have become intensely aware that as a resident of planet earth, our timeline is finite and of unknown length. Everyone surely knows this, but not everyone “gets it.” Well, we do, and it changes us forever.
I discovered proton therapy
As is the case with many of us, the challenge of cancer turned me into a researcher. And like my proton brothers, I was lucky. I found out about a lesser-known, painless, non-invasive therapy offering a high probability of knocking out my prostate cancer without side effects. I discovered proton therapy.
It was not proton that made me happy. I understood it would not be the elusive magical silver bullet, and as with any therapy, there would be no guarantees. But the way it works made sense to me. So much so that even if years later I were to find myself battling prostate cancer again, I could at least feel confident I had given myself the best shot in the first battle.
Finding proton gave me hope, and even the expectation that I would be okay. Today, seven years later, that vision continues.
I enjoy a unique camaraderie
For most of my life I was a shy, asocial introvert. I wanted to have friends and be a part of a close-knit social group, but it just didn’t come naturally. Instead, I became comfortable enough going socially solo.
In Jacksonville life was different, and the social playing field was more level. Regardless of our path to Jacksonville, we were all in the same boat. We were all at least a little bit scared, as well as thankful and hopeful.
We patients didn’t really have to become friends because we naturally were. We understood each other as no one else could, and with that comes an automatic bond and a unique camaraderie.
It’s a feeling I like, and it still makes me happy.
I have more friends
Ours is a strong, enduring bond. I have many more friends now than before cancer. It’s partly because of this camaraderie, and it’s also because I’ve admittedly become friendlier and somewhat more sociable. I’ve changed.
Some of my proton friends live nearby. In 2013—a couple years after proton—my wife Lucy and I decided quite uncharacteristically to host a little party for local proton people. It was fun, and we have partied every year since.
In 2018, our fifth annual gathering, we had over forty proton guests from near and far. For some, it clearly required some time, effort, and planning to attend. I have asked myself why they made the effort, why many have returned year after year, and why our group of proton partiers has grown.
I believe the answer is this: we want to gather with others who understand us. And we like being around happy people. We miss the uplifting and inspiring companionship experienced during treatment, and this gathering is a chance for another taste of that, if just for a few hours. Our yearly get-together is not a support group, and it’s not educational. It’s just fun and revitalizing.
I don’t sweat the small things
Size is relative. What once seemed large can quickly shrink when placed at the feet of the giant gorilla called cancer. And in an odd and slightly perverse way, I find myself in the gorilla’s debt. It has forced me to focus my attention on the truly large things that really matter.
Many of life’s little annoyances that drove me crazy before, now seem trivial by comparison. It’s not that I don’t notice them. I just don’t care so much. A lukewarm meal that should have been served piping hot is … a lukewarm meal, not a life-threatening crisis. A favorite shirt ruined in the laundry by an ink pen I left in its pocket is … a shirt I will remember fondly, not a reason to lose sleep. I have a long list of such things, and I’m sure you have your list, too.
So what matters to me now? If I were to tell you, it would sound preachy, so I won’t. After all, my list is mine, as your list is yours. But since encountering the beast, my frame of reference has changed. Yours probably has, too, and it’s for the better.
Our improved perspective of what’s important in life should make us both happier people.
Perhaps surprisingly, research has shown that happiness is not about wealth or even health. It has more to do with realistic expectations and a positive mindset. Gratitude, exercise, meditation, and random acts of kindness contribute to our happiness. Greater tolerance of others, accepting that which we cannot control, and embracing our imperfect existence as human beings all bring contentment to our lives.
Most importantly, we have given ourselves permission to be happy now because we have grasped the uncertainty of the future. Contentment cannot be contingent upon our next PSA test, the stock market movement, or the weather. If we forever kick our happiness down the road in that manner, it will never be ours. And there is a lot to be happy about today.
The exceptions that make the rule
I acknowledge that some people are not happy, including some who have had neither cancer nor proton therapy. Everyone’s life is a mixed bag, and any of us can easily find plenty to be unhappy about if that’s our focus. I do know some proton patients who are doing quite well, yet are unhappy. I know others who face greater challenges and are nevertheless remarkably content.
What makes the difference? Clearly, our circumstances do not dictate how we feel. It’s how we choose to respond to the hand we’ve been dealt that matters. We can choose to be happy, or not. Some fail to make that choice, while others try, but either can’t or don’t know how. In any case, it’s not cancer, proton, or winning the lottery that will make us happy or not. It’s our choice.
Proton brothers forever
Today I am clearly among the luckiest prostate cancer patients, but my circumstances could change tomorrow. Some of my friends—my proton brothers—have had a tougher time, battling a more advanced or aggressive prostate cancer, enduring multiple treatment modalities, side effects, or recurrence. Yet most of them still smile, laugh, and have a positive outlook.
That group could someday include me. I know it, and they know it. And regardless of our individual progress in battling the beast, we remain proton brothers. We continue to share a bond that cannot be broken, and appreciate each day in a manner unique to us.
Still, I ask myself whether I will continue to be happy when life gives me the next big kick in the pants. I say “when” and not “if” because it—whatever it will be—is inevitable. What if I have a recurrence, or develop some progressive, incurable neurological disease, or lose my eyesight? What if some Bernie Madoff drains my bank account? I like to think I’ll still notice the remaining positive aspects of my life, focus on them, and find contentment.
None of us is pleased with the bad news part of the deal. But all of us in the fight can nonetheless be happy for much the same reasons.
We discovered proton therapy and found each other. We are riding atop the gorilla’s head, and from there we have a new view of the world. We know what matters and have friends who share that view and understand us.
Such as it is, and in whatever quantity, life is good.
We can all be happy if we choose to be, so let’s have some fun. Let’s party.
What do others say about happiness?
Here are a dozen quotes on that topic. Food for thought. See if you can guess who said what (I’ve included the answers). You will ace the quiz simply by reading the quotes, so relax and enjoy!
Also, please *protected email* on happiness. Hearing from you will make me even happier.
“Folks are usually about as happy as they make their minds up to be.”
“Count your age by friends, not years. Count your life by smiles, not tears.”
“Happiness is not something ready made. It comes from your own actions.”
“Whoever is happy will make others happy.”
“Laughter is poison to fear.”
“Happiness is a choice. You can choose to be happy. There’s going to be stress in life, but it’s your choice whether you let it affect you or not.”
“I’ve got nothing to do today but smile.”
“I like money, but it’s never been about the money.”
“The real man smiles in trouble, gathers strength from distress, and grows brave by reflection.”
“True happiness is to enjoy the present, without anxious dependence upon the future, not to amuse ourselves with either hopes or fears but to rest satisfied with what we have, which is sufficient …”
“The greatest discovery of all time is that a person can change his future by merely changing his attitude.”
People say that we cancer survivors are fighting a courageous battle. The see us as brave warriors—even heroes—in the midst of a war. I have always had trouble relating to that characterization. I never wanted to fight in this war, and I don’t feel brave or heroic. But now, seven years post-treatment, I’m beginning to agree: maybe we are warriors.
Of course, neither you nor I volunteered for this. We were forced onto a battlefield of cancer-related choices full of unwanted risks. But happily, here I sit, seven years post-treatment, feeling good and still in the game. In fact, “game” is closer to how I see this. From the beginning, it’s been a game of risk.
Remember the old Hasbro game in a box? As a child, Risk seemed too complicated, and I preferred the more mindless and stress-free Chutes and Ladders. Today, Hasbro’s description of their classic game reminds me a little of the real-life one you and I are playing now. See if you agree:
The analogy isn’t perfect, but it’s not half bad. Attacks, defense, boldness, dangers, rewards … all parts of our life with cancer, and of the war we are waging so well. But the specific element I want to explore here—the essence of the game—is the name on the box: RISK.
Risk-taker, or not?
Do you consider yourself to be a risk-taker? Do you thrive on the thrill of playing the odds, or do you shudder when a risky situation presents itself? I probably fall mostly into the latter group, although I’ve learned to manage my risk-aversion reasonably well.
Since my diagnosis in 2010 I have become much more consciously and acutely aware of the role risk plays in my life. Having spoken with many others whose lives have been touched by cancer, I know the same is true for them. Some handle it with relative ease, while others have a difficult time dealing with the new risks they must face.
But face them we must, and we prostate cancer survivors confront each new risky decision head-on, like true warriors.
Preparing for battle
We all had plenty of pre-diagnosis preparation because life is full of risks. Driving a car is life-and-death risky. So is crossing the street. Eating a hot dog is a life-threatening choking hazard. To give us perspective, others may remind us of these when we feel an allegedly irrational fear. Afraid of flying? Someone is sure to point out that more people die in car accidents than plane crashes. Scared of snakes? Why? After all, you are nine times more likely to die from being struck by lightning than from a venomous snakebite. Feel better now?
So why don’t people say we are fighting a courageous battle with hot dogs? Well, if we don’t like planes or snakes we can generally avoid or at least minimize our exposure to them, and we don’t have to eat hot dogs. But with a cancer diagnosis we have no choice and little control. It’s a war into which we’re conscripted, and it’s no hot dog.
There’s no way out. We’re in the game, fighting the fight, battle by risky battle.
Battle #1: To test, or not to test?
That is the question, and it’s not without controversy. Inevitably, every man must answer it. Either we will, or we won’t obtain a PSA test and/or a DRE. No law requires us to have these (or other) tests that provide clues about prostate cancer. Likewise, no law prevents us from having them. It’s totally up to us, and it’s a critical decision.
To some of us, it seems obvious: have the tests, get the information, and respond accordingly. In reality, this has become a heated public debate, which can make it feel like risky business. There are prominent people who loudly discourage these tests, and others who adamantly promote them. The former warn that we’ll be panicked into having a biopsy we don’t need, followed by treatment we shouldn’t have. Others disagree, fearing we’ll miss a chance to catch cancer early and treat it more effectively.
It can be a tough decision, one we’ll have to revisit many times. Each time we opt out of these tests, we risk letting an asymptomatic early prostate cancer progress to a later stage, more challenging to treat. If we have the tests and they indicate the possibility of prostate cancer, we must face the next perilous fork on this risky road.
Battle #2: To biopsy, or not to biopsy?
With iffy test results, what’s our battle strategy now? Do we explore further, periodically repeating PSAs and DREs? Maybe we should seek newer, more sophisticated testing. More commonly, we opt to have a biopsy. Those who discouraged testing in the first place are likely to warn us of the perils of biopsy. Those who value information will urge us to proceed.
If the biopsy is negative, we can’t know if we have a tumor the biopsy missed. We’d have to loop back on the timeline and decide again whether to resume monitoring and testing. This could lead us back to the option of repeating the biopsy. It’s a nerve-racking merry-go-round ride.
However, a positive biopsy is definitive. It means we have cancer, and we must move closer to the front lines of this war.
Battle #3: To treat, or not to treat?
With a positive biopsy, we’ll need a new strategy. We can postpone treatment and take our chances with active surveillance—a wise choice, according to many. In that case, it’s back on the merry-go-round of testing and biopsies to monitor our newly identified adversary’s aggressiveness and speed of progression. We bet on winning the race by outliving the onset of symptoms from the typically slow-growing prostate cancer.
If we find those odds to be too risky, we could decide to proactively treat our cancer—exactly what the anti-testing, anti-biopsy group fearfully warned. With this strategy, we bet that choosing the right treatment will stop the cancer without significant side effects.
Treat it or watch it—unavoidably risky business. This stuff takes nerves of steel.
Battle #4: To cut, zap, or burn?
So we waited, then tested, biopsied, and diagnosed our prostate cancer. If we decide to treat it—to launch a direct attack against the enemy—we must move to the front line of this war. Hopefully, it will be the final battle.
What will be our plan of attack? Of the many weapons in our arsenal, which shall we choose? Open surgery? Robotic surgery? IMRT? Proton beam therapy? Brachytherapy? SBRT? HIFU? Laser ablation? Cryosurgery? Hormones? Chemotherapy? Maybe we should consider even newer weapons, not yet fully tested, but potentially more powerful.
In choosing our plan of attack, we might also have to engage our insurance company in battle. This is a topic for another blog post. Suffice it to say here that insurance issues complicate what we’d rather be a purely medical and personal decision. It complicates an already messy maze of decisions.
Which will give us the best cancer control with the fewest side effects? Better yet, which guarantees total cancer control with no side effects? Sadly, nobody has the answers. So we research the options and make an educated guess. Risk-taker or not, we’re still in the game and it’s our move. We’ll choose our weapon, engage the enemy, and hope for victory.
Before, during, and after treatment, we men are all in this game—or war—together. When our treatment has been highly successful, we celebrate together. When it’s been less than perfect, we support each other. We are a brotherhood, and we understand the mutual risks we face and the battles we fight. We understand that our future is unknowable, and we have no guarantee of anything.
After treatment, we’ll likely be tested periodically to make sure we’re still okay. Most of us will be fine, and a thankfully small percentage will have new issues to face. Such is our life, and we will never be free of all the risks life hands us.
Well, we’ve made it this far. Can we handle the uncertainty of our future?
The biggest risk of all
Cancer, cars, snakes, or hot dogs—living this life can be perilous. But the biggest risk of all does not occur at the decision points of our battles. What matters most is not how well we did with our prior decision, or how wise we’ll be for the next one. The massively more important question is, what are we doing between decisions?
I know men with consistently excellent results after treatment, yet they are overwrought with daily anxiety about what might happen tomorrow. Their life between PSA tests is filled with dread. This is tragic, because those are the days, weeks, and months during which they could enjoy life. It’s what they are fighting for.
At the other extreme, I know men who have had challenging issues, yet are highly focused on not squandering a precious minute. They have found a way to compartmentalize their cancer concerns, taking their enemy off the radar between tests or treatments. They focus on living each day to the fullest between tests, treatments, and decisions.
For most of us prostate cancer survivors, life now exists between PSA tests. If we don’t find a way to live it, we’ll lose it. We must remember and remind each other to use that time wisely, and not allow the gaps between tests to become filled with worry instead of wonder.
Consider yourself reminded.
Cancer or otherwise, I’m curious: what’s the greatest risk you are facing today? *protected email*. Thanks!