YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

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L Anon and M live in Minnesota, USA. He was 62 when he was diagnosed in June, 2009. His initial PSA was 5.2 ng/ml, his Gleason Score was 9 and although he does not state his staging it appears from his narrative that he would have been staged T1c. His choice of treatment was Da Vinci surgery. Here is his story.

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.**2 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.

 

UPDATED

October 2009

 

 

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.

 

UPDATED

December 2009

 

 

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?

L's e-mail address is: lglindsay@juno.com

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]

Note 2: 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.[back]