I finally told my son, Nick, that I had prostate cancer. We sat around the kitchen counter at breakfast. It was a full week after my diagnosis. I wasn’t sure how Nick’d take it. He’s fifteen. We’re real close. I waited the week until I’d made a treatment decision. My intent was to be reassuring, to be able to tell him with absolute certainty that everything would be just fine. I had a plan – eight weeks of radiation. We’d be okay. Not to worry.
“Hey, I won’t even lose my hair,” I told him, and smiled. He cut his waffles. Then I asked, “Any questions…. anything at all you want to know?”
He poured some syrup and thought for a long moment and finally looked up at me.
“Is there going to be any mood swings?”
Saturday, April 26, 2008
Into The Aftershock: Now Choose The Right Cancer Treatment
...
For the week following my diagnosis, the middle of the night was my Ground Hog Day. It kept repeating. A half Ambien would wear off by three a.m, when I would crawl out of bed in a fog to pee. I’d sit on the toilet, and the neon would flash….
Hey Bud, you have prostate cancer!
Talk about a morning jolt. It seemed like some mysterious internal mechanism was processing my new reality -- on my behalf -- and I was just sitting there, on the can, in the dark, being re-programmed. Night after night, I’d hear the words, shake my head, as if to say, You're screwed now -- and then shake off the last dribbles and go back to bed.
But the sleeping, that was over.
Eventually I’d get up and turn on the computer and continue to scale up the steep learning curve that is prostate cancer. I devoured PC research and websites and four books like saw palmetto tabs for my prostatitis (more later), and hung out on PC discussion boards, where posters talked of diapers and popping Viagra and penile implants. All nice guys, but they scared the crap out of me.
Oh sure, there were success stories too. But mostly not. Mostly I read more horror stories than even Stephen King could dream up.
Nevertheless…
My choices
Okay, here’s the smorgasbord of treatment choices that I discovered medical science had to offer me: open radical prostectomy, Da Vinci robotic surgery, brachytherapy, external beam radiation, androgen hormone therapy, crytotherapy, and watchful waiting. Waiting was not an option – because of my age, 55, the cancer was feasting on my testosterone and promising an early retirement.
I eliminated a couple of other options right off the bat. Crytotherapy freezes the prostate and kills malignant clusters, while ALSO destroying nerve bundles associated with an erection. We pass. Androgen deprivation therapy blocks production of testosterone, PC's favorite food -- but the Boys start shriveling up as you grow pointy tits. While reversible, this is not a good visual. Generally ADT is an adjunct therapy for men with advance-staged prostate cancer. If possible, we pass here too.
Which brings me to the big two entrees on the menu – surgery vs. radiation. There are different flavors of each.
What I quickly learned is that the medical community cannot tell me which treatment gives me my best shot for survival. Urologists are biased toward surgery, radiologists want to radiate it; but neither can brag on a superior cure rate. In terms of a survival, it’s a tie game. Catch it early, which I did with my annual PSA, and I have a 95 percent chance to remain cancer-free – with either treatment. And because there’s no consensus ‘gold standard’ therapy for prostate cancer, it’s up to the patient to choose.
Repeat: Up to the patient to choose.
Only problem here is, the choice I make in treatment – surgery or radiation – will determine the extent of collateral damage, in terms of incontinence and impotency, for the coming months, year and even longer.
If the biopsy invoked wariness and my Diagnosis Day (My Diagnosis) cool resolve, here I finally stumbled on a real fear: I choose my treatment – not a doctor who’d gone to med school for eight years. No no….let’s hand this one off to me, the English major.
Go with the alliteration: Save sex, protect peeing
With the survival question out of the way, I dwelled on two issues during my week of no sleep, middle-of-the night discussion board horror stories, and anxious indecision: Sex and peeing. Which treatment would deliver as little collateral damage as possible to both acts.
Simple. Focused. Real. I had a mission.
For 'younger' PC patients my age, open radical prostectomy surgery has been the ‘gold standard’ treatment for localized prostate cancer, if a bit medieval. Eight-inch incision. Dig the little bastard out. Be done with it for the next 20, 30 years.
More recently, a variation is the ‘nerve-sparring’ open prostectomy, where surgeons cut around the sensitive nerve bundles that cling to the sides of the prostate – all part of a guy’s delicate sexual apparatus. Still, this is a bloody operation, requiring anesthesia, at least a five-day hospital stay, and maybe two weeks wearing a catheter to pee.
My best case after – I’m off diapers in three months and boners return in a year. Worst case – I wait for Alzheimer's so I can forget this massive life-blunder.
For a full day, I considered Da Vinci robotics surgery, in which a machine performs the surgery awhile a surgeon remotely operates the machine. The idea is that by making smaller incisions and working with finer tools, the robot can do better than a surgeon in removing the prostate and minimizing the collateral damage. But when I talked with a local surgeon, he told me the procedure required such a high level of skill, even good surgeons (and thusly, their patients) had more problems with it than open surgery.
“Do you really want to be a data point on somebody’s learning curve?” he asked me.
Good point. Pass.
Moving on to brachytherapy seeds
There was immediate appeal here. About 40 permanent radioactive “seeds” – the size of a grain of rice – would be strategically implanted into my prostate, each radiating a bubble of death to malignant cells. It’s a few days of outpatient procedures, no extended hospital stay. No cutting. No catheters. No drugs to kill the post-procedure pain. I'd walk around for six weeks, radiating my cancer. (And no one's the wiser.) Just stay away from pregnant women. Side effects? Maybe a little rectal burning, or possibly some temporary incontinence, should the radiation in the seeds 'spill' outside the prostate.
Okay.....I’m thinking, seeds are a no-brainer compared to surgery. Then I discover brachytherapy without permanent seeds. Hey, even better. Again, it’s an outpatient procedure where a radiation oncologist can deliver higher doses of radiation in a more targeted fashion – MEANING….better outcomes with less chance of collateral damage.
I'm psyched.
But I know nothing
Finally, after my week-long PC crash course, I think the English major is ready to choose his fate. I know exactly what I want to do (temporary seeds), how to save my own life and my Guys and another 30 years of uninterrupted, diaperless peeing and on-demand, ah....my Mother's reading. But you get the Big Picture.
Until I meet Dr. BG.
Dr. BG is a radiation oncologist. He heads a large Cancer Care Center, in South Florida, which is also an affiliate of the prestigious H. Moffit Comprehensive Cancer Care Center in Tampa. All Big Dogs.
For over an hour, Dr. BG gave my wife, Lorraine, and me the most comprehensive rundown of my prostate cancer situation to date, reviewed my treatment options in detail....and then quickly shot down my idea of the brachytherapy seeds, telling me my Gleason 7 score is too high. I need high-dose radiation and he has the latest delivery system to get it done.
“The absolute cutting-edge,” he tells me. Image-Guided Radiation Therapy. IGRT. Dr. BG said it was perfect for my situation.
Based on the pathology report from my biopsy and subsequent CT and MRI scans on my bones and lymph nodes, Dr. BG tells us my cancer is likely localized to the prostate. This is great news but…I'm stuck on "likely." Reality is, scans can’t see cancer at the molecular level, just the bigger clusters. But based on my last PSA (5.6), Gleason score (7), cancer stage (T1c), and negative scans, there's a damn good chance it's localized.
Just no guarantees. Once you get cancer, you treat it, you go live your life, and you test regularly and forever.
What Dr. BG did assure me of, however, is that with IGRT, the usual side effects of conventional prostate surgeries and external beam radiation treatments are pretty much history. Shouldn't be any problems. Maybe a little rectal burning, he said, but that’s easy to treat.
I 'm still playing it cool and tell him I gotta think about it, but....ALRIGHT! IGRT. The cutting edge. YES! Save the sex, protect the peeing....This is good, real good.
By the way, what’s rectal burning?
***
Next up. So Radiate Me: I Pick IGRT (Or, Betting All My Marbles On The Latest In High Dose Radiation for Prostate Cancer)
For the week following my diagnosis, the middle of the night was my Ground Hog Day. It kept repeating. A half Ambien would wear off by three a.m, when I would crawl out of bed in a fog to pee. I’d sit on the toilet, and the neon would flash….
Hey Bud, you have prostate cancer!
Talk about a morning jolt. It seemed like some mysterious internal mechanism was processing my new reality -- on my behalf -- and I was just sitting there, on the can, in the dark, being re-programmed. Night after night, I’d hear the words, shake my head, as if to say, You're screwed now -- and then shake off the last dribbles and go back to bed.
But the sleeping, that was over.
Eventually I’d get up and turn on the computer and continue to scale up the steep learning curve that is prostate cancer. I devoured PC research and websites and four books like saw palmetto tabs for my prostatitis (more later), and hung out on PC discussion boards, where posters talked of diapers and popping Viagra and penile implants. All nice guys, but they scared the crap out of me.
Oh sure, there were success stories too. But mostly not. Mostly I read more horror stories than even Stephen King could dream up.
Nevertheless…
My choices
Okay, here’s the smorgasbord of treatment choices that I discovered medical science had to offer me: open radical prostectomy, Da Vinci robotic surgery, brachytherapy, external beam radiation, androgen hormone therapy, crytotherapy, and watchful waiting. Waiting was not an option – because of my age, 55, the cancer was feasting on my testosterone and promising an early retirement.
I eliminated a couple of other options right off the bat. Crytotherapy freezes the prostate and kills malignant clusters, while ALSO destroying nerve bundles associated with an erection. We pass. Androgen deprivation therapy blocks production of testosterone, PC's favorite food -- but the Boys start shriveling up as you grow pointy tits. While reversible, this is not a good visual. Generally ADT is an adjunct therapy for men with advance-staged prostate cancer. If possible, we pass here too.
Which brings me to the big two entrees on the menu – surgery vs. radiation. There are different flavors of each.
What I quickly learned is that the medical community cannot tell me which treatment gives me my best shot for survival. Urologists are biased toward surgery, radiologists want to radiate it; but neither can brag on a superior cure rate. In terms of a survival, it’s a tie game. Catch it early, which I did with my annual PSA, and I have a 95 percent chance to remain cancer-free – with either treatment. And because there’s no consensus ‘gold standard’ therapy for prostate cancer, it’s up to the patient to choose.
Repeat: Up to the patient to choose.
Only problem here is, the choice I make in treatment – surgery or radiation – will determine the extent of collateral damage, in terms of incontinence and impotency, for the coming months, year and even longer.
If the biopsy invoked wariness and my Diagnosis Day (My Diagnosis) cool resolve, here I finally stumbled on a real fear: I choose my treatment – not a doctor who’d gone to med school for eight years. No no….let’s hand this one off to me, the English major.
Go with the alliteration: Save sex, protect peeing
With the survival question out of the way, I dwelled on two issues during my week of no sleep, middle-of-the night discussion board horror stories, and anxious indecision: Sex and peeing. Which treatment would deliver as little collateral damage as possible to both acts.
Simple. Focused. Real. I had a mission.
For 'younger' PC patients my age, open radical prostectomy surgery has been the ‘gold standard’ treatment for localized prostate cancer, if a bit medieval. Eight-inch incision. Dig the little bastard out. Be done with it for the next 20, 30 years.
More recently, a variation is the ‘nerve-sparring’ open prostectomy, where surgeons cut around the sensitive nerve bundles that cling to the sides of the prostate – all part of a guy’s delicate sexual apparatus. Still, this is a bloody operation, requiring anesthesia, at least a five-day hospital stay, and maybe two weeks wearing a catheter to pee.
My best case after – I’m off diapers in three months and boners return in a year. Worst case – I wait for Alzheimer's so I can forget this massive life-blunder.
For a full day, I considered Da Vinci robotics surgery, in which a machine performs the surgery awhile a surgeon remotely operates the machine. The idea is that by making smaller incisions and working with finer tools, the robot can do better than a surgeon in removing the prostate and minimizing the collateral damage. But when I talked with a local surgeon, he told me the procedure required such a high level of skill, even good surgeons (and thusly, their patients) had more problems with it than open surgery.
“Do you really want to be a data point on somebody’s learning curve?” he asked me.
Good point. Pass.
Moving on to brachytherapy seeds
There was immediate appeal here. About 40 permanent radioactive “seeds” – the size of a grain of rice – would be strategically implanted into my prostate, each radiating a bubble of death to malignant cells. It’s a few days of outpatient procedures, no extended hospital stay. No cutting. No catheters. No drugs to kill the post-procedure pain. I'd walk around for six weeks, radiating my cancer. (And no one's the wiser.) Just stay away from pregnant women. Side effects? Maybe a little rectal burning, or possibly some temporary incontinence, should the radiation in the seeds 'spill' outside the prostate.
Okay.....I’m thinking, seeds are a no-brainer compared to surgery. Then I discover brachytherapy without permanent seeds. Hey, even better. Again, it’s an outpatient procedure where a radiation oncologist can deliver higher doses of radiation in a more targeted fashion – MEANING….better outcomes with less chance of collateral damage.
I'm psyched.
But I know nothing
Finally, after my week-long PC crash course, I think the English major is ready to choose his fate. I know exactly what I want to do (temporary seeds), how to save my own life and my Guys and another 30 years of uninterrupted, diaperless peeing and on-demand, ah....my Mother's reading. But you get the Big Picture.
Until I meet Dr. BG.
Dr. BG is a radiation oncologist. He heads a large Cancer Care Center, in South Florida, which is also an affiliate of the prestigious H. Moffit Comprehensive Cancer Care Center in Tampa. All Big Dogs.
For over an hour, Dr. BG gave my wife, Lorraine, and me the most comprehensive rundown of my prostate cancer situation to date, reviewed my treatment options in detail....and then quickly shot down my idea of the brachytherapy seeds, telling me my Gleason 7 score is too high. I need high-dose radiation and he has the latest delivery system to get it done.
“The absolute cutting-edge,” he tells me. Image-Guided Radiation Therapy. IGRT. Dr. BG said it was perfect for my situation.
Based on the pathology report from my biopsy and subsequent CT and MRI scans on my bones and lymph nodes, Dr. BG tells us my cancer is likely localized to the prostate. This is great news but…I'm stuck on "likely." Reality is, scans can’t see cancer at the molecular level, just the bigger clusters. But based on my last PSA (5.6), Gleason score (7), cancer stage (T1c), and negative scans, there's a damn good chance it's localized.
Just no guarantees. Once you get cancer, you treat it, you go live your life, and you test regularly and forever.
What Dr. BG did assure me of, however, is that with IGRT, the usual side effects of conventional prostate surgeries and external beam radiation treatments are pretty much history. Shouldn't be any problems. Maybe a little rectal burning, he said, but that’s easy to treat.
I 'm still playing it cool and tell him I gotta think about it, but....ALRIGHT! IGRT. The cutting edge. YES! Save the sex, protect the peeing....This is good, real good.
By the way, what’s rectal burning?
***
Next up. So Radiate Me: I Pick IGRT (Or, Betting All My Marbles On The Latest In High Dose Radiation for Prostate Cancer)
Sunday, April 20, 2008
My Diagnosis (March 2008)
(This post served as the basis for the second chapter in The Prostate Storm)
A slightly cracked plastic model of a penile implant rested near the elbow of my urologist, who was about to deliver the news on my biopsy. He dropped his eyes just as he started to speak, so I figured this wasn't going to go well.
"Steve," he says, "your biopsy came back positive. You have prostate cancer."
Nothing, no reaction. I was a blank. Staring at the busted implant.
Not a sickening panic in my gut. No gripping fear. My urologist, Dr. WS, had just told me that the biopsy on my prostate had come back with cancer and....I barely nodded.
I was having a brush with my mortality, and nothing was happening. It was almost disappointing.
Instead, I took out a folded piece of yellow paper and a blue-ink pen and prepared to take notes. Like I was gonna do an interview with a new client.
Either I had lapsed into some kind of serious denial or my coping mechanism for really, really bad news was extraordinarily evolved. I knew it was the former. But taking notes was working for me. My memory is so bad. I need to get the facts first....fret later. Which I did do, thankfully, with many sleepless nights and Ambien. More on that later.
First my notes:
Dr. WS told me one of my 12 biopsy samples came back showing cancer, which I figured wasn’t bad. One in 12, okay. At least it wasn’t a huge tumor, right? But just when I started thinking about the half-full glass, he said the Gleason number was 7, “your cancer is on the verge of being aggressive.”
Aggressive gave me a little jolt. Hello, Steve....shit’s happening here, pay attention....
I already knew that a pathologist looks at the biopsy samples and assigns the cancer cells a rating, based on shape and other factors. The more ragged the shape of the cancerous cells, the higher the Gleason score and the worst your situation. Having a 1-4 is pretty good, 5-7 is the middle ground, 8-10 is the worst case. So I was borderline. But stuck on that word ‘aggressive.’
Dr. WS told me that I couldn’t afford to wait “at my age” to see what happens. ‘Watchful waiting’ is an option for older guys who generally have the slow-growing cells. Fifty-five is relatively young for prostate cancer -- so when it occurs, the cancer is generally more -- here’s the word again -- aggressive.
He gave me a primer on the surgical and radiation options, and immediately launches into the risks, so nothing sounds appealing. As a urologist, he wants to surgically remove the entire prostate for me. Slice around all the sensitive sexual equipment and peeing apparatus, and pluck it out. Visions of incontinence, diapers and a bonerless life danced in my head. I told him I want to talk to a radiation oncologist first, and he said he would arrange that for me.
I also asked him if I didn’t do anything, how long would it take for the cancer to kill me? This was purely roadside rubbernecking, I had no intention of sitting on this. But I want to know. How long would I have? He shrugged initially, but I pressed, Two years? And he replied, Probably, if you do nothing.
Wow. Two years....
Dan Fogelberg immediately came to mind. He had just died of prostate cancer, never had an annual PSA till the cancer was raging -- which was too late. Two years later, the music died.
PSA’s saving grace
Fortunately, I had had my annual PSA (prostate-specific antigen) test every year since turning 50 -- five years ago -- when my family doctor discovered my prostate had become slightly enlarged. Year after year, the PSA level came back around 1.0 -- normal. Then, this December, a spike to 6.6 -- and red flags started waving. I suspected prostatitis, a common bacterial infection of the prostate. So they put me on six weeks of hard-core antibiotics. But the PSA barely budged -- to 5.2 and 5.6 -- suggesting something more sinister than bacteria.
So I had the biopsy and waited. And I read. From what I learned, some 230,000+ men are diagnosed with prostate cancer every year, and about 27,000 die from it. The rest die from something else. Catch it early and the chances for survival are excellent -- up to 95 percent. Hey, you can’t get 100% survivability walking down the street; besides, I've run marathons for 25 years. I'm all fight in the 23rd mile. My chances had to be better than excellent.
Game time
Four days after my diagnosis, I find myself few sitting at a baseball game, watching my son, Nick, take the mound in the seventh inning of a 4-3 game. We're winning. It’s up to Nick now, on a beautiful night in early April. Close this thing down. Three other games had ended in our quad, so all the coaches and dozens of players crowded behind the fence to catch the finish. All eyes on Nick.
All the years of playing baseball, the practices, travel and thousands of hours coaching and playing with Nick -- now here he stood, in full 15-year-old bloom, pitching his brains out on a big game with a big crowd. A gentle breeze starts blowing in my face, and my eyes start to water, as Nick strikes out the first batter who goes down spinning in the dirt. Then he gets the second batter to chase a low-outside curve and ground out to second. One more to go.... Nick's on fire.
Suddenly the emotions of the last four days start to wash over me, as Nick fires two fastball strikes and then drops a sick knucklecurve to punch out the last batter and end the game. Behind the fence, I watch Nick get mobbed by his teammates, as big old fat tears well up and run down my face, until I can barely see him.
Coming Next in Into the Aftershock: Now Choose A Cancer Treatment
A slightly cracked plastic model of a penile implant rested near the elbow of my urologist, who was about to deliver the news on my biopsy. He dropped his eyes just as he started to speak, so I figured this wasn't going to go well.
"Steve," he says, "your biopsy came back positive. You have prostate cancer."
Nothing, no reaction. I was a blank. Staring at the busted implant.
Not a sickening panic in my gut. No gripping fear. My urologist, Dr. WS, had just told me that the biopsy on my prostate had come back with cancer and....I barely nodded.
I was having a brush with my mortality, and nothing was happening. It was almost disappointing.
Instead, I took out a folded piece of yellow paper and a blue-ink pen and prepared to take notes. Like I was gonna do an interview with a new client.
Either I had lapsed into some kind of serious denial or my coping mechanism for really, really bad news was extraordinarily evolved. I knew it was the former. But taking notes was working for me. My memory is so bad. I need to get the facts first....fret later. Which I did do, thankfully, with many sleepless nights and Ambien. More on that later.
First my notes:
Dr. WS told me one of my 12 biopsy samples came back showing cancer, which I figured wasn’t bad. One in 12, okay. At least it wasn’t a huge tumor, right? But just when I started thinking about the half-full glass, he said the Gleason number was 7, “your cancer is on the verge of being aggressive.”
Aggressive gave me a little jolt. Hello, Steve....shit’s happening here, pay attention....
I already knew that a pathologist looks at the biopsy samples and assigns the cancer cells a rating, based on shape and other factors. The more ragged the shape of the cancerous cells, the higher the Gleason score and the worst your situation. Having a 1-4 is pretty good, 5-7 is the middle ground, 8-10 is the worst case. So I was borderline. But stuck on that word ‘aggressive.’
Dr. WS told me that I couldn’t afford to wait “at my age” to see what happens. ‘Watchful waiting’ is an option for older guys who generally have the slow-growing cells. Fifty-five is relatively young for prostate cancer -- so when it occurs, the cancer is generally more -- here’s the word again -- aggressive.
He gave me a primer on the surgical and radiation options, and immediately launches into the risks, so nothing sounds appealing. As a urologist, he wants to surgically remove the entire prostate for me. Slice around all the sensitive sexual equipment and peeing apparatus, and pluck it out. Visions of incontinence, diapers and a bonerless life danced in my head. I told him I want to talk to a radiation oncologist first, and he said he would arrange that for me.
I also asked him if I didn’t do anything, how long would it take for the cancer to kill me? This was purely roadside rubbernecking, I had no intention of sitting on this. But I want to know. How long would I have? He shrugged initially, but I pressed, Two years? And he replied, Probably, if you do nothing.
Wow. Two years....
Dan Fogelberg immediately came to mind. He had just died of prostate cancer, never had an annual PSA till the cancer was raging -- which was too late. Two years later, the music died.
PSA’s saving grace
Fortunately, I had had my annual PSA (prostate-specific antigen) test every year since turning 50 -- five years ago -- when my family doctor discovered my prostate had become slightly enlarged. Year after year, the PSA level came back around 1.0 -- normal. Then, this December, a spike to 6.6 -- and red flags started waving. I suspected prostatitis, a common bacterial infection of the prostate. So they put me on six weeks of hard-core antibiotics. But the PSA barely budged -- to 5.2 and 5.6 -- suggesting something more sinister than bacteria.
So I had the biopsy and waited. And I read. From what I learned, some 230,000+ men are diagnosed with prostate cancer every year, and about 27,000 die from it. The rest die from something else. Catch it early and the chances for survival are excellent -- up to 95 percent. Hey, you can’t get 100% survivability walking down the street; besides, I've run marathons for 25 years. I'm all fight in the 23rd mile. My chances had to be better than excellent.
Game time
Four days after my diagnosis, I find myself few sitting at a baseball game, watching my son, Nick, take the mound in the seventh inning of a 4-3 game. We're winning. It’s up to Nick now, on a beautiful night in early April. Close this thing down. Three other games had ended in our quad, so all the coaches and dozens of players crowded behind the fence to catch the finish. All eyes on Nick.
All the years of playing baseball, the practices, travel and thousands of hours coaching and playing with Nick -- now here he stood, in full 15-year-old bloom, pitching his brains out on a big game with a big crowd. A gentle breeze starts blowing in my face, and my eyes start to water, as Nick strikes out the first batter who goes down spinning in the dirt. Then he gets the second batter to chase a low-outside curve and ground out to second. One more to go.... Nick's on fire.
Suddenly the emotions of the last four days start to wash over me, as Nick fires two fastball strikes and then drops a sick knucklecurve to punch out the last batter and end the game. Behind the fence, I watch Nick get mobbed by his teammates, as big old fat tears well up and run down my face, until I can barely see him.
Coming Next in Into the Aftershock: Now Choose A Cancer Treatment
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