My alarm bells going off, I naturally ask what the number was. I had just taken my tenth follow-up PSA test after high-dose radiation treatment 28 months earlier, but I didn’t know the result. The nurse tells me 1.5 (ng/ml), which initially was a relief but I realized too it had risen from a nadir of 0.9 to 1.3 and now 1.5 in just six months. I wasn’t sure what a little bump up like that meant. A year ago I had experienced a full point jump, the phantom “bounce” which happens to a lot of guys who have radiation therapy; it settled back to the nadir within three months.
Like most guys with prostate cancer, I also had a history of BPH and prostatitis, which can influence PSA levels, so my initial reaction was not to worry. A small rise could be attributable to lots of things, including sex. So I asked the nurse to have the urologist to please call me, but she explained the doctor didn’t make phone calls to patients “otherwise he’d be doing that all the time.” She insisted Dr. JM wanted to see me “as soon as possible” — which, she said, would have to be next Friday, a full week away.
Huh? Doctor raises my anxiety level to Defcon 5, he won’t call me, and he won’t see me for seven days—what crappy patient care is that? Is that how the “cancer may be returning” message is generally delivered?
I asked again, “Would you please have him call me,” and she said very nicely she would talk to the doctor but no guarantees. Great. Meanwhile, I’ll let my imagination go wild for a week., thank you very much …
Surprisingly, a day later, the urologist actually does call me, sounding irritated that he’s on the phone with me instead of delivering a digital rectal exam. But he insists, “I need to check you out right away because three rises in a row could indicate another biopsy and radiation failure” but adds that I should not worry because I have options for failed radiation, “like freezing the cancer …”
What fucking cancer? I’m in a state of shock, I’m cancer free. Or thought I was. One minute I’m a prostate cancer survivor, the horror show of biopsies and confusing treatment choices and massive radiation two-and-a-half years ago behind me — the next moment, out of the blue, I’m confronting “radiation failure” and “another biopsy.”
In a blink it seems, I’m staring into the blunt junkyard language of the prostate cancer still stalking me: Salvage therapy.
Over and over again in The Prostate Storm, I drum the point that if you catch prostate cancer earlier enough with PSA tests, meaning it’s been found localized to the prostate, the cure rate is the absolute best in the cancer business — around 95 percent for the first five years with surgery or radiation.
But for that 1-in-20 guy, of course, those stats provide little solace. For that guy, he eventually gets the word the cancer is back. Was that me? Am I the poor schmuck?
We can all worry about being that guy who lost the statistical lottery, but I didn’t really think that would be me. Nobody does, with such favorable odds. Not until hearing “radiation failure” from Dr. JM — and even then I wasn’t buying it.
“Any time you have three rises, it suggests radiation failure,” he says to me.
“And you think these two incremental rises (from .9 to 1.3 to 1.5) are significant?”
“Yes.”
Trying not to panic, I’m also fully aware of my troubled history with prostatitis and BPH, both diseases of the prostate, that can drive up PSA levels. Since the radiation treatment, I haven’t experienced any pronounced symptoms, but still — I had a history. The PSA test is also influenced by so many arbitrary things like sex the night before the test and strenuous exercise. Maybe something is artificially elevating the PSA level, I’m thinking.
“Why can’t I just have another PSA is three months and then see where I’m at?” I ask.
“What, are you trying to be in a urologist?” he snaps at me, increasingly aggitated with this phone call and my questions. “I need you to come in so I can do the research.” The research? The only research he could do is a DRE, a feeling around for any new hardness on the surface of the prostate.
Granted, I probably should’ve gone to the appointment. But I didn’t. Instead, I talked with three other doctors, including one urologist, to see how worried I should be about the two incremental rises. All of them told me not to worry, that the PSA can bounce around at this level.
“Plus you do have a history with prostatitis,” my family physician said. Sit tight, they all advised me, and have another PSA in three months and take it from there. But if it rises over 2 ng/ml, I should take the pattern serious and be prepared that a biopsy may be recommended.
While their advice was somewhat of a relief, my as*hole urologist’s premature warning had served a purpose: He made me realize that despite the high-dose radiation treatment, I still lived in the cancer world, I’d never left it, and I never would. Whether the trend of a couple rising PSAs is not my friend, or an inconsequential blip, I shouldn’t assume anything, good or bad.
Several days after that phone call with Dr. JM, his office sent me a letter, telling me that I had a medical situation that needed immediate care but that his practice would not give it to me any longer.
Paraphrasing, I was fired as a patient.
Whatever. The guy was a jerk. The conversation should’ve gone something like, “Steve, the PSA can bounce around but let’s just be conservative because of the two rises, let me examine you, and then we’ll have a PSA in three months and take it from there. If it gets over 2.0, we may need to consider a biopsy. Hopefully, it’s nothing.”
I could’ve lived with that. He would have put me on notice, without undue alarm, got the DRE and let me know we’re watching the PSA closely now. I would’ve gone in and felt like my doctor was being typically conservative but looking out for me.
Instead, he just scared the piss out of me.
For two days, I was an emotional wreck, more of a mess than when I got the original cancer diagnosis. I knew more now. I did radiation, and survived the treatment and, worst of all, the six-month recovery suffering through overactive bladder syndrome, nasty rectal burn, long bouts with hemorrhoids and the onset of mild erectile dysfunction.
I thought I’d got to the other side of these miseries. What I knew about salvage therapy — whether your initial major treatment is radiation or surgery — is that the collateral damage from a second treatment can be devastating.
For starters, they won’t do surgery to radiation patients. Nor will they do more high-dose radiation. I really didn’t know what my options were, although I was getting way ahead of the data to get myself tied up in knots about What’s Next.
I need another PSA first. I need to see if a rising PSA is a pattern, or an anomaly. If it keeps going up, I’ll have to start looking into my options all over again.
Starting with a new urologist.
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