Over the last few years I've discovered that there's a whole spectrum of prostate thinking out there, ranging from ignorance (the major mode, where most men are) through denial (it won't happen to me), and then into a branching labyrinth of medical and quasi-medical takes, some of which are contradictory and most of which point to specific courses of action, each of which has down sides, risks, and possible complications. Details of my pathways through this territory follow, with the notion that there may be something in my experiences that could make others' journeys in Prostatelandia a bit easier.
The first question is often: is there any history of prostate issues in your family? It's overwhelmingly a genetically-linked affliction, so if dad or brothers had issues, the chance that YOU will increases. There's a problem right there, especially for New Englanders who don't talk about that area of the body—what my brother John called "the gland that dare not speak its name". I didn't really know IF my father had had a prostatectomy, just that he'd had some sort of procedure "down there" sometime in his 60s (i.e., 50-some years ago, in the medical Dark Ages). My brother John DID have a prostatectomy when he was mid-60s (in the late 1990s), but I never knew any details. My brother David's [third] wife didn't think he'd ever had any problems in that line, but sorta just didn't know...
The first line of diagnosis involves DRE (digital rectal exam) by one's primary care physician, with the objective of gauging the size of the prostate (which enlarges with age, mechanism unknown and often a source of urinary issues) and detecting any palpable abnormalities (lumps, bumps, etc.). The indignity of the procedure is something (almost) nobody would be likely to look forward to. The next step is a PSA (prostate-specific antigen) test, which requires blood to be drawn and so means engagement with a phlebotomist. PSA testing is controversial, but for some people (those with familial history of prostate cancer, and disproportionately for some racial groups) it seems worth the slight risks accompanying the blood drawing and the anxiety that attends reports of results.
Somebody whose primary care physician orders PSA tests as a part of regular bloodwork is pretty sure to eventually be nudged to see a urologist (the triggering value seems to be PSA 4.0). While there's buzz out there saying that PSA isn't a sensitive measure of anything (and suggesting that too many PSA tests are done), thusfar there's no other diagnostic tool that comes close to what the PSA can indicate. The main criterion is rate of change: a rapidly-increasing PSA is an alarm bell, and sometimes is heard too late.
If the PSA comes back over 4.0, the local urologist is pretty sure to want to do a prostate biopsy, and that's the first really scary fence for most men who bide in the urologist's chambers. The procedure itself seems medieval and degrading (anal probe, random tissue samples, ew...) and, once undergone, doesn't make you a fan eager to repeat the adventure. But you're on the bus by that time.
So tissue samples go off to the pathologist and back comes an analysis, usually involving a Gleason score that tells the urologist how much potentially cancer-harboring Tissue of Interest is present. If the Gleason score is no higher than 3+3, the urologist says let's try again in a year. So you go home and start reading about prostate cancer, and discover that if you are "lucky" you have a slow-growing form that, as they say, "you'll die with and not of" and you may therefore enter "watchful waiting", involving periodic PSA tests and occasional biopsies. My first biopsy was 3+3, occasioning a sigh of relief and favoring an expectation that I could watchfully wait.
BUT one of the side effects of informing oneself about prostate issues is that one learns about others who have experience of the same embuggerance. In my case it was one of my closest friends from high school, and his was the "aggressive" form, undiagnosed until the cancer had already "left the envelope" (escaped the confines of his prostate, spread, metastasized). I followed his treatment struggles over 5+ years, until he died in November 2016 (after cryosurgery, side effects including incontinence, eventually radiation and chemotherapy). That potent negative example inclined me to seek better tools than the local urologist had in his quiver, so (having read about the enhanced diagnostic powers of MRI-guided biopsy procedures) I requested a referral to a Boston prostate specialist, in lieu of a second biopsy with the local urologist.
Because I could, I essentially leapt up 2 or 3 orders of the urological hierarchy, bypassing the regional treatment center (Maine Medical, in Portland) and going directly to the purlieus of Harvard Medical School, to specialists at Beth Israel Deaconess who were trained at Johns Hopkins and Stanford (the gold standards for robotic surgery and CyberKnife radiation therapy, respectively). The wonder is that it was easy to get an appointment with Dr. Peter Chang, and soon afterward I began his process of diagnosis: an MRI, a targeted biopsy, a consultation when the Gleason result came back 3+4 (ruling out watchful waiting), a choice between surgery and radiation therapy (I had a very helpful talk about the CyberKnife option with Dr. Irving Kaplan, a Beth Israel/Harvard radiation oncologist), and (once I'd opted for surgery) an appointment for laparoscopic robotic prostatectomy on 16 February, 4 months after the first contact.
The choice of surgery over radiation wasn't immediate or obvious for me, but the main deciding factors were the relative uncertainty of radiation side effects 5+ years hence, and the tangible probability of a "cure" with successful surgery. As Dr. Chang put it, with surgery you take the hit up front. With radiation there might be a hit somewhere in the future. There's the added element that it's not clear that surgery is even possible after radiation, but radiation can still be used if surgery is not successful. The ideal outcome of prostatectomy is /no prostate=no prostate cancer/. There are risks of incontinence and impotence, but no treatment option is risk-free.
Both of these leading-edge treatment modalities are not your father's prostate treatment. They have come a long way in the last decade, and seem no longer to be considered "experimental", but they require very expensive equipment, operated by specialists who have done many hundreds of iterations of the procedures, require large teams of support personnel, and so are not widely distributed. Medicare does cover the procedures (so woe betide those under 65, and those outside the US), but there are plenty of additional costs, since patients often must travel to distant locations.