Having been afflicted on and off for maybe three decades with the discomforts of urethritis, prostatitis, and recurrent kidney stones, I coped uneasily with minor flare-up in my urinary tract. These discomforts included burning after urination, weak- and split-stream pees, and once only terrific pelvic floor pain. What finally drove me to the urologist's office, however, was the gradual onset of erectile dysfunction ("E.D."), which initially I had declined to discuss with my doctor owing mostly to personal embarrassment and my stupidity.
My testosterone level tested quite low in May, 2009. I was diagnosed with hypogonadism. Separately, my PSA level had increased from about 2.3 to 4.0 over the course of the past three years. The urologist was willing to prescribe me with testosterone replacement therapy ("TRT") for hypogonadism, but only after I submitted to a prostate biopsy to determine whether I had prostate cancer. The biopsy showed bilateral cancer with a Gleason 3 + 5 = 8 on one side and a Gleason 4 + 5 = 9 on the other side. Extraprostatic extension in the soft tissue and perineural invasion were noted as well on the left side. There would no TRT for me. Testosterone is not a cause, but science regards male hormone to be an accelerant for extant prostate cancer. What followed for me was more limp dick and my prolonged study of cancer treatment options.
Misgivings about the decline in my sexual function and a search for its cure led me to accept an unsought biopsy. Setting about in high hopes to my restore potency, I had embarked on an entirely different and slippery path. Was I was looking for happiness in all the wrong places? Maybe, but I hadn't first consulted Eros, I might never have discovered a silent enemy that, as I would see shortly, had snuck up upon me unawares and threatened to overwhelm me.
I looked at HIFU treatment and discerned between its "Sonablate" and "Ablatherm" variants. The former refers to technology developed in the USA and the latter technology developed in Europe. HIFU has not yet mustered presently ongoing trials by the FDA. Until the FDA authorizes its use, US-based surgeons may offer HIFU treatments in offshore treatment centers including Canada. So far as I can tell the Ablatherm-based surgery is a long-standing, standard operating procedure in Europe. I checked with one hospital in Germany where HIFU is preceded by a TURP (Trans Urethral Resection of the Prostate). Apparently, the Ablatherm-assisted surgery is preceded by a TURP because the Ablatherm is designed for use with less enlarged, e.g., smaller (cancerous) prostates. Sonablate-assisted surgeries treat larger (inflamed) prostates without the concurrent requirement for a TURP. I momentarily became excited about the prospects of HIFU. I didn't like the internet chatter about the possibility of post-op urinary strictures.
In its current state-of-the- art, the HIFU device itself looks like a 1950s' era vacuum bulb testing machine. It's angular shape reminds me of a prototype tool that while functional has not proved-out long enough for its owners to reinvest profits into acquiring the help of a designer who will perfect its exterior design and eye candy. The kicker, however, was that the Canadian HIFU center whose help I sought would have none of me. My Gleason score was too high. I concluded that HIFU practitioners in the USA want to practice on low hanging fruit, a sure thing, in order to increase the odds for reported HIFU success.
Next I looked at proton beam therapy. I was sold. These are $125 million dollar, gigantic cyclotron machines that suck protons out of water, accelerate the protons to the speed of light, and magnetically guide the proton beams for release at the site of the prostate cancer tissue. Unlike standard photon radiation treatment, there is less entrance and exit collateral radiation tissue damage with proton radiation. There was one problem. There are only five proton beam treatment centers around the US (many more centers under construction), and the treatment is five times the cost of the Da Vinci surgery.
Moreover, with my high Gleason score the two proton US-based treatment centers (which accepted me for treatment) wanted me to take two months of hormone ablation ("ADT") before submitting to proton treatment in order to shrink the cancer's growth. I had already experienced the extreme downside of very low testosterone --- no multi-tasking capability, low executive function, low energy levels, insomnia, depression, and E.D. No thanx, too much internet chatter about the statistically remote but nonetheless adverse side effects of Lupron that sought to shrink testosterone levels to near zero.
So, I opted for Da Vinci surgery on 27 August 2009. I am 17 or 18 days post-op. I don't think I can add any more descriptors to what others have said at this excellent web site about the Da Vinci procedure. (My post op pathology metrics are "pT3a NO MX RO" --- whatever that means?) **1 Except this. I went into surgery knowing in advance that mine would be a non-nerve sparing surgery which also would excise many lymph nodes around the prostate. I also knew that the surgeon would cut away a length of my manhood during the operation when he re-attached the urethra to the bladder after removing the prostate gland. It's good that I am entering my dotage. I would have been subjected to ridicule by my contemporaries if I had gone through middle school with my presently much diminished male member. I recollect with interest that my surgeon recently tasked his nurse to remove my catheter. It was telling, I think, that while the surgeon looked carefully 12 days post-op at the condition of his sutures in my abdomen, he never lowered my pants to the point where he would have to suffer both my gaze and the sight of my sadly diminutive member. He never acquainted me in advance that size would take such a hit. He left it to web sites like this one to acquaint his prostate cancer surgery patients with the small points and more gruesome aspects of his prospective handiwork.
Disregarding for a moment the below-the-belt visuals, I have not quite grown accustomed to the lack of libido and sexual function. After all my identify has been secure for maybe a half-century. My life's work would change, my partners come and go, every aspect in life was in flux .... but through it all I might count upon my trusty male member to rise to meet the occasion. The flesh was my temple. That's over now. Maybe this is what all the blather is on prostate cancer websites about getting spiritual. It's quite a hit. And, if one is not already depressed before a non-nerve sparing operation, I suspect most enervated patients have lost a lot more than their nerve.
Prolonged life vs. quality of life. Oh, great Western medicine, where hast thou taken us. Alive, yes, alive, but at what price? Frankly, had my wife and family not so constrained me to pursue a cure, every nostrum that medicine had to offer, alone I might have adopted a perverse variant of watchful waiting ... the sort presented by the 1950s Australian film "ON THE BEACH."
Prostate cancer survivors require a positive mental attitude ("PMA") and/or a good sense of humor. I'm not sure these defenses are the same. [Many people - and studies - indicate that humour is an integral part of a positive mental attitude, which is why TROOP C is included on the site.] The former is a sustained and practiced state-of-mind, a bulwark on which personal hope rests. The latter is a flash-in-the-pan, a momentary analgesic that cuts trough the gloom. Humor embraces irony, which --- if I had to choose between PMA and a sense of humor --- I would choose humor because humor and irony acknowledge the human condition and fate.
My surgeon was emphatic. He insisted my nerve bundles must be removed owing to the aggressiveness of the cancer. I had a Gleason 9 with "extra prostatic extension," which means that the cancer had emerged from the prostate gland into the surrounding fatty tissue. "Your situation is extreme, you're in the 10% of my client base that you don't want to be in. It's lethal if you wait. Prostate gland, nerve bundles, and lymph nodes, they are all coming out!" I liked the doctor's frankness and appreciated his black and white presentation. There was no wiggle room. I gulped and hit rock bottom.
In the pre-op meeting shortly before the scheduled surgery my wife screwed up her courage to ask a question of my surgeon: "You are doing the surgery, right?" My wife wanted assurance that this very experienced surgeon and NOT his young resident-in-training would perform the operation. The doctor responded that he employed a "team approach," and proceeded to point-out that there would be an anaesthesiologist and nurse on his team. The doctor never directly responded whether or how much his assistant surgeon would do during the operation. In retrospect the chief surgeon's oblique, nay, evasive answer was apocryphal.
The resident-in-training visited me in the hospital while I convalesced post-op and supplied me with a list of prescription medicines that I would fill after being discharged. With interest I noted that one of the prescribed meds was Cialis. At the time my catheter was removed twelve days later I asked the chief surgeon why his assistant had prescribed Cialis to me if my nerve bundles indeed had been removed?!? The chief surgeon blanched and darted out of the room. He returned five minutes later to say that the Cialis prescription was a mistake, and that I need not take Cialis. A couple of weeks later I received a billing statement that itemized the respective charges for my surgery. I was billed for the more expensive "nerve sparing" surgery. So, the question is are my nerve bundles in or out? I really haven't the nerve at present to dig deeper into the miscommunication, which would serve only to introduce an adversarial mistrust into the doctor-patient relationship.
Hmm, let's see: it's a toss-up. Will I get an erection ever again -or- will cancer spread itself along the super highway nerve bundles that the operating team meant to excise, but did not? (Educators never really equipped us in high school or in college re: the human condition, did they?)
In a month or so I will submit myself to a blood draw and learn where my post-op PSA level stands.
From time-to-time I take a peek at the on-line musings of other Yana e-posters whose Gleason scores toted to 8 or higher. Anecdotal evidence shows me the correlation between Gleason score and morbidity: the higher the Gleason, the more likely a prostate cancer survivor will face eventual cancer metastases surfacing within his system.
My immediate post-op pathology report showed no micro-cancer lingered at the prostate margins. Mindful, however, of my extracapsular extension (ECE) a couple of sources suggested that I consider radiation treatment regardless of whether my PSA test showed cancer resurgence. Specifically, a doctor at the Proton Beam Institute in Jacksonville, FL suggested emphatically I not wait for the results of a PSA test, but I should proceed directly to GO!, i.e., that I submit soonest to salvage radiation. I decided to wait for the results of my first post-op PSA test next week before deciding whether and/or how to proceed with salvage therapy.
I wish more men on this website discussed their philosophic approach to mortality and how their beliefs (or lack thereof) guided their decision(s) to seek or refrain from further treatment. The matter is very personal and our education did not supply us with words to discuss how we arrive at decisions re: life and death issues. Can I be the only chap with aggressive prostate cancer who weighs "quality of life" vs. "life at any cost?" I am thoroughly secular and not at all comforted by religious invocations or by making appeals for divine intervention.
While I am unencumbered by religious faith, I am also adrift without the flotation which faith so clearly provides to other men on these pages. I approached life without having subscribed to notions about whether any extraterrestrial influence took the dimmest interest whatsoever in my personal welfare. I still feel this way. Outside of my family and a few friends, I remain an actuarial cipher, a statistic in a dataset from which researchers will determine whether treatment "A" worked better than treatment "B." I am not complaining, mind you, I'm just facing up to my historic preoccupation with socio-economic values, the only values I can be sure of, which are of limited help as I weigh my next steps. Are most men on these page constrained by an unspoken societal expectation to remain politically correct (PC)? Or do I exceed the bounds of good taste and propriety by suggesting each of us must undergo an internal emotional calculation when we weight alternative treatments, their risks, and the eventual quality of life in which we might find ourselves?
Nearly 18 months after the dreaded Da Vinci treatment I am still taking nourishment and my spirits are fine! Of course I dribble a little each day but mild incontinence is tolerable and a USD$7.00 pack of 30 thin pads lasts me for a month.
Impotence following non-nerve sparing surgery is quite another matter, but even here I've adjusted my expectations to -zero- expectations. I feel like a fraud in those rare instances when a young thing senses my ogling gaze: "Oh, young damsel, just disregard the hot breath you feel on the back of your neck. Your're safe, I can't get it up anymore."
It's not the actual action I miss because I was not particularly active when I was still potent. It's the "potential" for engaging in action that I miss. Non-nerve sparing surgery means the surgery effectively has savaged and precluded ever engaging in or discharging in your erotic fantasizing. That's a rough trip, but you get used to it.
Out of curiosity I injected myself once only with a doctor-prescribed dose of intercavenosa "trimix" whose therapeutic effects produced a slight turgidity followed by a mild tingling sensation. I thanked the nurse who followed closely the procedure with her poker-faced interest, but declined to fill the prescription which she thrust into my empty hand. Enough is enough, I think nature has spoken louder than words. (At my age I'm still looking for the return of alchemy to re-charge the value of my flagging pension funds, which shows that between lust and greed, the latter is more potent in old age.)
Every study I've read about prostate cancer suggests it's a wily and intractible adversary. I submit to PSA testing every 90 days and then hold my breath for the results. I count myself really lucky everytime the results come back "undetectable" and I try not to think about what unattractive options await my decision-taking if the 'lil metastic sons-of-bitches overwhelm my systemic defenses. Unlike "W," I don't say "Bring 'em on!" And I do wonder how I will fare and hold-up under any future assault by a relentless intruder who brought me low once already. I'm mostly a vegetarian, and a close male friend told me that in my dotage I resemble "... a little old lady." But just to set the record straight, if it had a human face I would gladly subject prostate cancer to waterboarding and consequently be remanded to a cell in Gitmo.
Post-cancer surgery I've grown more philosophic and (tritely-put) have begun "... to treasure the now."?
Note 1: An explanation of the TNM staging system is available here From this we can interpret the results as
T3a: the tumor has spread through the capsule on one or both sides;
N0: there has been no spread to the regional lymph nodes;
MX: cannot evaluate distant metastasis
I have been unable to find any reference to R0 as part of the staging. [back]
No news is of course "good news." And good news it is: I am alive and thriving, even happy. It does not get better than that, yes? And the "mild incontinence"? Yes, it's mildly annoying, like the buzzing of an infrequent mosquito on a pleasant summer evening. And the "complete 'ED'"? I'm thankful only this misfortune occurred well into my 60's. Bothersome? Not exactly. If you've seen Swedish director Ingmar Bergman's film Wild Strawberries (1957), you might understand the wistful reflections of one who became late in life an enuch. Something to do with the "roads not taken" and "too many women but NO time at all". (I won't pratter on.)
The prognosis? This is the interesting part. Frequent PSA tests (often mandated for one whose former gleason score was a nine (9)) break-up one's life into short paragraphs, full stops. Will recurrent cancer be detectible or not? If "nay," proceed blithely on. If "yea," grit your teeth for another run through the medical gauntlet. A cancer survivor's concept of time changes dramatically. A sapient cancer survivor understand s/he is on a short leash: Don't get too accustomed to the long run or you might become disappointed. Or Expect The Unexpected.
I participate in a well-run prostate cancer support group which meets semi-monthly by phone (via Skype.) In any one phone meeting four-to-nine participants collaborate. Laughing at one another and at oneself is the most helpful part. Several co-participants are having a very rough time, judging not so much by their demeanor but by the number of failed protocols and treatments to which they have submitted. While I am usually a little flip in the phone meetings, I grow quiet when I hear what some of the other group members are experiencing. I am not sure my gallows humor is shared by all.
I'll check-in next year at this time with YANA (I hope.)
I am nearly four years out from da Vinci robotic surgery which removed my prostate gland and presumably excised the cancer that grew within the gland. Funny place for cancer to rear itself: this area is a nexus for piss, shit and semen. If cancer had eyes and enjoyed pornography, then I could understand why cancer would set-up shop here; but otherwise my cancer was just in for dirty business. Anyway, just yesterday I received the results from my most recent "venipuncture specimen collection", a fancy expression which justifies hefty fees for drawing a blood sample. My PSA test result was "undetectible". I heaved a sigh of relief and beat a hasty retreat from the clinic where I had presented myself. The gods were with me. I don't take it for granted. Never have.
Pre-op mine was a Gleason nine (9) score. Doctors suggested post-op that I be watched like a hawk. Operationally this means I submit myself for PSA-testing more frequently than the average prostate cancer survivor. Every three-to-six months I submit myself for a PSA test. The fairly short lead times between PSA tests focus me upon ... well .... upon short-term time horizons. The net effect is psychological: My sense of humor is sharper. Not much gets under my skin anymore. No-one suffers fools gladly, and my short(er)-term horizons lead me to think and say: "Buzz-off, I really don't have any time for (your) nonsense." (Of course, it helps that I am largely retired and don't have to kiss-ass anymore on a work chain.)
For anyone who is curious: I am post-op an enuch without any sexual function and I am slightly incontinent ("one slim pad-a-day"). And, although it took me a long time post-op to reach the opinion and say it, I am "okay" with my post-op adverse side effects. (Again, it helps to be of retirement age for one to say he does not mind wetting his pants and being without sexual function.)
On an altogether different topic: recent news in major media re: the da Vinci robotic procedure. Seems there is enough post-op data collected which shows (to my way of thinking) the need by hospitals for a return-on-investment on these expensive machines (not to mention a need for business survival & profitability by the sole (?) da Vinci robot manufacturer) has racheted-up and over-hyped both the machine and patient expectations. Would I have turned to da Vinci surgery if I knew then what I know now? Probably. Proton beam therapy is the only other prostate cancer treatment which I considered and would consider again.
A-OK, and nothing new to report save my continued opinion that commercial bankers and licensed physicians all should be re-cast as salaried employees within regulated utilities.
Listing slightly to starboard with a diesel oil slick trailing behind, the tramp steamer slowly makes its way for port to undergo repairs. No, it's not an outtake from the 1950's movie African Queen featuring Humphrey Bogart and Lauren Becall. The simile comports well, however, with a PCa surgery survivor who submits hesitantly to "salvage radiation treatment" ("SRT").
Let's be clear: Doctors seek on behalf of their patients a "home run" which will knock cancer entirely out of the park. Their patients might settle, however, for a "base hit", i.e., for treatments which "manage" cancer without causing any terrible side effects. And therein is the trade-off: "Dial-up" the daily treatment's radiation gray ("gy") level and it certainly will suppress cancer … as well as entail unwelcome side effects. "Dial-down" the daily radiation gray and there might not be any adverse side effects, but the cancer still could survive & flourish. "Save the pisser, save the pooper", I implored the radiation oncologist. "Please 'dial-down' the daily gray!"
Radiation is a deadly science
It's very plain to see
First it killed the Japanese
And now it's killing me
But, of course, it does not work that way when trying to acquaint the doctor re: what quality of life you would settle for post-SRT. Once you submit to "best practices" and prescribed protocol which the radiation oncologist presumably has customized for your situation, all you can do is buckle-up, stroke the fuzzy dice beneath the rear-view mirror, and mutter: "I'm ready to run the medical gantlet: Game On!"
If the seas are high and choppy, life in a windowless engine room takes on a grim, even surrealistic cast. Even if the sailor faces fate with stone-cold emotion, his mind paints with unsinkable clarity alternative horizons on the bridge. Beset by high winds and tossed to & fro below deck the sailor's reptilian brain assumes command. When German soldiers chattered mindlessly to no-one in particular during the final Russian offensive to take Berlin in April, 1945, the German defenders --- certain of their grisly end --- were credited with these audible, probably alcohol-fueled, grunts: "Lieben und toeten!" Politically-correct hagiographers might translate the words as "Love and kill". But the sailor below deck knows the meaning of the soldiers' grunts: "Fu*k & kill!" --- the only primeval notions which their fear-addled minds could grasp.
Whoever said "There are no atheists in foxholes!" is wrong.
"….Choline C-11 PET scan." If your oncologist utters these words during an appointment in a clinical setting it's probably because your PCa surgery has failed; your follow-up salvage radiation treatment/s also have failed; your PSA tests just went from "undetectable" to "detectable"; and your oncologist is trying to sanitize & divert your attention with the words "Choline C-1" when the doc really should be saying: "I'm sorry, but you're fucked and your doctor is lost!". That the road diverges and you are constrained to choose, nay, pursue one path rather than another path did NOT start during the course of the above-ref. doctor's appointment, but path divergence began possibly decades earlier when you were too young to understand that the shortest distance between two points entails choosing between or among two or more straight lines. Let me explain.
As a teenager I observed two very different orders of car ornaments which reflected their respective drivers' belief system/s : The first was a plastic statue of the Virgin Mary secured by unknown means on top of the car's dashboard; and the other order of ornament were dice, i.e., two gambling dice, which drivers suspended beneath their rear-view mirror. The meaning of the Virgin Mary was easy to figure-out, but even then I was dubious whether invoking & pleading before a plastic statuary would keep me out of harm's way. More than a half-century ago I leaned towards showing "lucky dice" as a way of describing my understanding of the natural order. That I did NOT buy & suspend dice below my rear-view mirror owed to the fact I was driving my dad's car; and I certainly perceived my parents' cultural prohibition against making any reference to "lady luck" in the scheme of things. A few months ago I looked online to purchase a corded pendant with two dice. The dice which I might have purchased online were enormous, fluffy, unattractive, and available only through an overseas distributor. Instead I bought online a plastic decal which features two dice and the word "LUCKY". The decal is now affixed to my car's rear side-window. Fifty years' gestation period vexed to naught, and I finally have the courage to publicize my convictions (or lack thereof)!
For seven weeks last summer I took-up residence within a "cancer house" occupied also by other cancer patients who awaited their daily turn for treatment under our medical clinic's salvage radiation X-ray machine. The short-term, cancer residential facility was filled, too, with religious statuary which was too big and omnipresent to ignore. In public space stood a huge dry-erase board which beckons residents to chalk their greetings, musings, and, for all I knew or cared, local theater recommendations. One evening I observed these words which a co-resident had written on the public, dry-erase board: "IT'S ALL GOOD". Peevishly and with the mischief of a juvenile I added this addendum in brackets behind "IT'S ALL GOOD": (….until it's not!). By the next morning someone had erased "... until it's not". The original public message remained.
I concede the "Lucky" sticker which I plastered on my rear car window has become a personal embarrassment: the window sticker which reflects my (cosmic) belief system is so "juvenile"! The stenciled word "Lucky" is too faint for easy reading unless sunlight hits the rear window just right. I'm too lazy to remove the sticker itself.
This past year the results of my frequent PSA testing fluctuate wildly like a broken compass needle between "detectable" and "undetectable". I suspect the little PCa shits are hiding-out, waiting their chance to re-emerge unless I die first of a heart attack.
Several years ago I became a dues-paying member of "FINAL EXIT NETWORK" which is based in Tallahassee, FL. I support the human right to "death with dignity", and I'd prefer to leave my last few dollars to my wife & children rather than let them be drained by doctors & nurses during my last few months. ("All's well that ends well", and I have hope, too!)
L's e-mail address is: sotolvision AT gmail.com (replace "AT" with "@")