This is a difficult article to write. In fact, I don’t really want to write about this topic at all. It’s not a pleasant subject for anyone, least of all a prostate cancer survivor like me. Or to be more precise, least of all for a prostate cancer survivor who has already tussled with this elephant, which thankfully I have not. Yet.
Make no mistake about it. The elephant is here, whether we acknowledge it or not. If it’s not already in your room it is most certainly in your house or biding its time somewhere in your neighborhood. And we should talk about it. After all, nearly every one of us prostate cancer survivors, regardless of our personal PSA history, has at least thought about recurrence—the return of prostate cancer—the elephant.
Just like our initial diagnosis, prostate cancer recurrence is usually first identified by specific patterns of a rising PSA, which is why we monitor our PSA post-proton. When we are originally diagnosed with cancer we do our best to control or get rid of it—that’s job #1. Then afterward, sometimes obsessively, but at least for a fleeting moment we wonder if it we “got it all.” And even if we did, we are always aware it could return. Finally, we do our best not to think about that possibility.
Some of you are now battling a recurrence, or maybe have already fought that battle. This does not (yet) include me, and I therefore must admit I am perhaps not the most qualified person to explore it. But I have walked with friends traveling the recurrence road, and they have taught me a lot. I have also walked a fine line along the edge of that road myself as my PSA almost reached the critical level that would have nudged me squarely onto Recurrence Road. A near miss.
This article is not about the medical side of recurrence. It is about the rest of the story.
Recurrence is a complex medical matter. There is a ton of readily available information about it online and from medical professionals who will explain it in scientific or clinical terms. You can find an abundance of statistics for a seemingly endless combination of circumstances. Useful information, to be sure, but it is not the whole story.
This article is not about the medical side of recurrence. It is about the rest of the story.
Fear of recurrence
All of us prostate cancer survivors have no choice but to live with the omnipresent possibility of recurrence, and some of us must navigate through its actuality. It is not an easy road to travel, and only a small minority of us would not feel at least a glimmer of fear.
In fact, fear of recurrence is so common that it has its own 3-letter moniker: FCR: Fear of Cancer Recurrence. Of course, we want to measure the degree of our FCR, and I discovered there is a standardized rating scale with yet another 3-letter designation: CWS: Cancer Worry Scale. To measure our FCR on the CWS, there is a 42-item Fear of Cancer Recurrence Inventory—FCRI, for short. Lots of letters. Must be important.
So okay, we fear it and we can measure our fear. But day by day, how do we live with the knowledge that it could return? How do we deal with the ever-present possibility of reliving the horrible day of our original diagnosis and battling the same beast yet again? What would we do? How would our lives change?
This is the elephant in the room, and we survivors generally avoid the topic, even among other survivors. Of course, pretending we don’t see it does not make it any less real. It is still in the room, and even though the odds are in our favor that our cancer will not return, we know that odds are odds because there is a chance it will.
What we really need is more conversation, especially among ourselves, the prostate cancer survivors everyone else is measuring.
So we measure those odds, and we measure our fear on the CWS—just one of a plethora of rating scales to quantify the likes of our PSA-related anxiety, our level of distress, our quality of life, and more. Numbers, numbers, and more numbers. What we really need is more conversation, especially among ourselves, the prostate cancer survivors everyone else is measuring.
So why don’t we talk about it more? Why has it taken me so many years to even write about it? I’ll begin my answer by sharing a memory that still haunts me.
My encounter with Ben
I first became aware of the very personal psychological impact of recurrence several years ago. My introduction to this topic came courtesy of Ben, a proton brother I met for just a few impactful minutes I still think about today.
I had arrived early at a neighborhood restaurant to rearrange tables and grab some chairs for a group of local proton brothers meeting for a casual lunch. Before any others arrived, I was approached by a man I had never met, but he somehow knew about our lunch. With a smile and an outreached hand, I introduced myself.
Ben told me quite simply that he stopped by to let me know that—in his words—he was a failure. I had no earthly idea what he meant, and he explained with a simple, succinct statement that his therapy did not work for him. He apparently had a biochemical recurrence (BCR) of his prostate cancer. Ben then said he could not stay and turned to leave.
… there is no admission requirement of a PSA level or anything else. Prostate cancer and proton therapy are our bond …
I encouraged him—maybe even implored him—to stay, reminding him that we are all in this together for better or worse, that in no way was he a failure, and we would certainly welcome him to join us for lunch. He is one of us, and there is no admission requirement of a PSA level or anything else. Prostate cancer and proton therapy are our bond, regardless of the outcome.
Sadly, I failed to convince him to stay for lunch, and I have not heard from him since. To this day I feel that I somehow let him down. After all, why did he make the effort to stop by, only to declare failure and leave? I still have no answer.
I have used Ben’s actual first name in case he happens to read this. I would love for him to contact me. He remains as welcome as anyone in our group of local proton alumni and would assuredly find friendship and kinship among us, some of whom are also dealing with recurrence issues.
Failure and disenfranchisement
I can still hear Ben’s voice as he declared himself a failure. I’ll never know for certain why he felt so, but I can imagine how I might feel in his shoes.
It is a glorious victory we share with our many new proton brothers, a bond that is fueled for many years …
Upon completion of proton therapy many of us—probably including Ben—experience a feeling of euphoria. Having reached the finish line, our expectation of being cured and joyfully going home to resume our normal life is intense. We are cheered by our treatment team and by other patients as we complete our final proton session. It is a glorious victory we share with our many new proton brothers, a bond that is fueled for many years at least partly by this initial euphoria.
But inevitably some of us face recurrence, and for those who do, the jubilation abruptly ends.
When our initial therapy for prostate cancer does not eliminate or “control” the cancer, the medical world calls it a failure, not of us, but of the therapy. But a patient can see it as a more personal failure. From Ben’s skewed perspective, he—Ben—failed to respond to the treatment, failed to control the cancer, maybe even failed to choose the right therapy, and ultimately failed to find his way back to a normal pre-cancer life. Worse yet, he failed not only himself, but also his friends and family who were counting on him to win this battle.
It can feel as though we ourselves are a failure, no longer measuring up to the more successful results of our many proton brothers who had stellar outcomes. As such, we feel like we have let them down, possibly feeling ashamed to admit our unfortunate result even to those who would most certainly understand. This can leave us feeling alone and disenfranchised from the tightly knit group of proton alumni continuing to celebrate their good fortune. In our mind we no longer fit in, and furthermore, we don’t want to rain on their parade.
Adding insult to injury, I have also heard from men who feel abandoned by their original treatment facility. This is understandable, even if unfair to the facility. After all, the original treatment team is no longer in the driver’s seat, and any subsequent management, planning, or salvage treatment of a man’s recurrent cancer will likely be elsewhere. Expecting the same degree of engagement from the original team during salvage efforts makes no sense. Nevertheless, the feeling is real and further amplifies our isolation.
Some men understandably require a brief period of solitude to regroup and come to terms with their new challenge, which is not the type of isolation described above. Once these men are ready to face the world, they are totally open and up front about their situation and continue to engage and communicate with their proton brothers and alma mater. But in my experience, such men are unfortunately the exception.
The blame game
As I continue to contemplate my brief encounter with Ben, I recall and wonder about the subtle undertone of anger I detected. He did not seem angry with me, and only later did I have time to think about the target of his anger. Who did Ben blame for what he called “failure?”
If we have a recurrence we surely must attribute blame, mustn’t we? There are several candidates we could be tempted to blame. And make no mistake about it, we do want to assign blame. It’s a losing proposition, but it is nevertheless what we tend to do when bad things happen. Eventually we might reach the “oh well, such is life” or “stuff happens” stage, but not until we attempt to identify the culprit.
Let’s begin with the obvious target: proton therapy. Is it fair to say it didn’t work? Tricky question. If it kept cancer at bay for a while, maybe for years, then it worked at least that much. If it saved us the ordeal of severe side effects, we’d also have to concede that. But did it break a promise by not preventing another round of prostate cancer? Well, no. We know there was no such promise. There are no treatments for prostate cancer that can make such a promise. Not even proton.
Well then, what about our medical team? Can we blame the urologists, oncologists, physicists, and dosimetrists for devising a faulty plan? For example, would we have been better off with 41 zaps rather than 39, or maybe a 28 or 20 zap hypofractionated regimen? We had a recurrence, so it seems fair to say their plan that was less than perfect. Or was it? Maybe their plan was the absolute best approach for the circumstances at hand, and if not for their skill in devising it our outcome might have been much worse. Argh!
the blame game is a losing one that accomplishes nothing.
It looks like we are left with no choice but to blame ourselves. We chose proton, it failed us, so clearly we should have chosen something else. Except … how do we know something else would have had a better result? Maybe an alternative therapy would have given us a shorter cancer-free period or worse side effects? We’ll never know. Drat!
Regardless of how we ultimately deal with the issue of blame, the recurrence remains. So again, the blame game is a losing one that accomplishes nothing.
Let’s return again to Ben’s story. His sudden unexpected appearance at the restaurant followed by a quick and abrupt exit left me hanging out to dry, so to speak. Even without knowing Ben I felt a connection, and for me there was an unintended consequence of his behavior. In a word, I felt abandoned.
I realize that I am relatively unimportant in this scenario, but it is important to see that there is indeed a flipside to this coin. When a man experiencing recurrence withdraws from his previous connections—groups of men still celebrating their good fortune—we can hardly blame him. And as we should, most of us recognize and acknowledge the difficult road ahead for Ben, and we have not withdrawn from him. We want to support him on this next difficult journey because he matters to us, we care about him, and despite the odds, we know we could someday find ourselves in his shoes.
I have several friends who had a recurrence, and thankfully we still communicate, remain friends, and support each other. But I have other friends battling a second round of prostate cancer who have all but disappeared from my life, undoubtedly for reasons already described. I miss them and feel sadness at the premature and unnecessary loss of their presence in my life.
So no, this is not about me, but I nevertheless do feel abandoned. Those friends—proton brothers—matter to me and are part of my life. We have been through a unique experience together, and a recurrence does not alter the bond. Or at least it should not.
What if I have a recurrence? I have thought about this quite a bit. Would I continue writing …
What if I have a recurrence? I have thought about this quite a bit. Would I continue writing for The After Proton Blog? Would I no longer be qualified to speak on behalf of proton therapy? Should I remove my name from the proton ambassador list? Would it be best if I were to just disappear, relegating myself to the “damaged goods” shelf? What would I do? What should I do?
What would you want me to do?
The road we travel
Many of us view a cancer diagnosis as one isolated incident and recurrence as another. But I think it makes more sense and is more useful to think of our first encounter with prostate cancer as the opening salvo to a life change. Once we embark on our new road of life after cancer, recurrence becomes an instant possibility and is just one of many bridges we may have to cross before we reach the finish line.
Despite the fact that with proton therapy we are unlikely to have debilitating side effects or a second round of prostate cancer, we might. And every possible outcome is one of many side streets of the main road we travel together. When one of us finds himself in uncharted territory, the rest of us will be there to support him and help navigate if we can.
We prostate cancer survivors have a unique and special bond made even stronger by virtue of having shared the experience of proton therapy. Our connection does not depend on future eventualities, and we want and need that connection with all our brothers, not just the luckiest. Regardless of what tomorrow brings we should continue to cherish and nurture our rare bond, and to do so we must continue talking—even about recurrence—among ourselves. All of us.
Our connection does not depend on future eventualities, and we want and need that connection with all our brothers, not just the luckiest.
There is no way to sugarcoat it: recurrence—or even just the possibility of it—sucks. And as I expected, this was a difficult article to write. But my message, trite as it may sound, is simple:
We are all in this together, for better or worse, through thick and thin.
If we have lost touch or if you would like to share your recurrence story with me, please email me here.