Update from yesterday: I heard from Kevin's wife, the surgery went well. We continue our thoughts and prayers for Kevin's continued well being and recovery.
In an email from a regular reader, Greg Campbell asked one of the questions I found myself asking when first diagnosed.
“Wow. And as an uneducated patient, how do you make the choice? Faith in your doctors I guess.”
I understand Greg's comment. Just as you are trying to deal with the fact you have cancer, you're told there are a number of treatment modalities from which to choose. "No problem Doc...which one do you suggest?"............(insert the sound of crickets chirping here) He only tells you each choice has pros and cons to consider.
Like Greg, I had grown up trusting my doctors and following their advice/direction. However, in today's environment, once diagnosed with a cancer like mine (good outcomes almost assured regardless of the treatment chosen) my trusted physician would only provide information on the options, suggest I further educate myself as much as possible on the advantages and disadvantages of each option, and then make my own selection.
This was my exact response to Greg:
“Trust in doctors is important, but they can't make a choice for you, nor will they. A diagnosis of cancer has a way of focusing your attention and commitment to educate yourself...then, you make the best decision you can and go with it.”
I was lost for about two weeks, talking to anyone who would listen, seeking the advice of survivors about their choices, and reading every article I could find online. It was information overload. "Why the hell won't he just tell me what I ought to do?" I asked myself, "At least he could tell me what he would do if he were in my place."
Of particular frustration was the very knowledge that my chances for a good outcome from the cancer seemed excellent...but the resulting effects of the treatment, should I choose incorrectly, could change my life for weeks, months, years, even...for life. It could change the life of everyone close to me as well.
Once I made my decision, with agreement from Lucia, although still not certain I knew enough to arrive at the best possible decision, I refused to allow any shadow of doubt to cloud my commitment. I had to.
In the end, I found the experience an affirming and liberating one. I now understand and acknowledge I am in control of my health care...a full partner with the medical community.
Tuesday, January 31, 2012
Monday, January 30, 2012
He's on the table today...
As I write this, a friend, business partner, and mentor is undergoing prostate surgery in Phoenix. Kevin, of whom I have written in an earlier post, was diagnosed with nearly identical numbers to mine at about the same time. In our subsequent conversations, it was Kevin who made the first cogent argument for the surgical option as I was debating a treatment choice.
We have had a few conversations following my surgery/recovery during which I was pleased to be able to provide Kevin with experiences and impressions from my perspective (recognizing that my experience cannot be generalized to anyone else). Many of Kevin's questions were the same questions I had...catheter, discomfort, catheter, complications, catheter, and, of course, that pesky catheter.
Unlike my experience, Kevin's surgery is an open surgery as his surgeon favors the open technique much as the surgeon with whom I was comfortable favored robotic prostatectomy. Just as with the choice of treatment option, the choice of approach is a personal decision and not a matter for argument or comparison.
Prostate cancer, like any disease, is an intensely personal thing. No two patients will have the same experiences or reactions and it is not our place to advocate for any specific treatment choice. Rather, it is our call to be advocates for prostate health education, continued research, and to provide support for those who find themselves facing the decisions/events we have faced.
I wish you well Kevin. Just ten weeks ago today I was back in my room wondering what the next several weeks would hold (and how the hell I was going to put up with the catheter for ten days or so).
May your next ten weeks be as rewarding a period of personal growth and renewal as mine have been.
We have had a few conversations following my surgery/recovery during which I was pleased to be able to provide Kevin with experiences and impressions from my perspective (recognizing that my experience cannot be generalized to anyone else). Many of Kevin's questions were the same questions I had...catheter, discomfort, catheter, complications, catheter, and, of course, that pesky catheter.
Unlike my experience, Kevin's surgery is an open surgery as his surgeon favors the open technique much as the surgeon with whom I was comfortable favored robotic prostatectomy. Just as with the choice of treatment option, the choice of approach is a personal decision and not a matter for argument or comparison.
Prostate cancer, like any disease, is an intensely personal thing. No two patients will have the same experiences or reactions and it is not our place to advocate for any specific treatment choice. Rather, it is our call to be advocates for prostate health education, continued research, and to provide support for those who find themselves facing the decisions/events we have faced.
I wish you well Kevin. Just ten weeks ago today I was back in my room wondering what the next several weeks would hold (and how the hell I was going to put up with the catheter for ten days or so).
May your next ten weeks be as rewarding a period of personal growth and renewal as mine have been.
Friday, January 27, 2012
Of prayer and prostates
At a meeting this morning, I learned of a friend who received about the worst cancer news one can receive. It was suggested notes of encouragement would be appreciated...I'll write mine as soon as I'm through here.
I served a church for four years after leaving seminary (more than 30 years ago) and discovered, to everyone's benefit, I lacked the temperament to be an effective minister; it's a sure sign when your first instinct is to strangle any parent who volunteered to chaperon a teen dance only to cancel at the last minute. But this isn't about that.
I'm a very good prayer, I write terrific prayers...but I never had any visceral attachment to prayer...until my prostatectomy. If I had to be placed on a theological continuum from screaming fundamentalist to existential secular humanist, for most of my thinking life I would have fallen close to the latter.
Whenever people offered thoughts and prayers (T&P) I graciously accepted the offer but had no feeling of having received anything. Similarly, when I offered T&P I was sincere in the offer, but never felt any metaphysical reality in the act.
I have neither an explanation nor intellectual understanding of my change, but those feelings (or lack thereof) have been replaced with both acceptance and true appreciation for the importance and absolute value of prayer in times of distress.
In the hospital, I felt the prayers people offered on my behalf, I was strengthened by them. And, when I offer the same today I feel the power of the words and believe they are received and efficacious.
OK, it took me sixty-plus years and prostate cancer to accept what most five year olds know instinctively. It's a better way to be.
I served a church for four years after leaving seminary (more than 30 years ago) and discovered, to everyone's benefit, I lacked the temperament to be an effective minister; it's a sure sign when your first instinct is to strangle any parent who volunteered to chaperon a teen dance only to cancel at the last minute. But this isn't about that.
I'm a very good prayer, I write terrific prayers...but I never had any visceral attachment to prayer...until my prostatectomy. If I had to be placed on a theological continuum from screaming fundamentalist to existential secular humanist, for most of my thinking life I would have fallen close to the latter.
Whenever people offered thoughts and prayers (T&P) I graciously accepted the offer but had no feeling of having received anything. Similarly, when I offered T&P I was sincere in the offer, but never felt any metaphysical reality in the act.
I have neither an explanation nor intellectual understanding of my change, but those feelings (or lack thereof) have been replaced with both acceptance and true appreciation for the importance and absolute value of prayer in times of distress.
In the hospital, I felt the prayers people offered on my behalf, I was strengthened by them. And, when I offer the same today I feel the power of the words and believe they are received and efficacious.
OK, it took me sixty-plus years and prostate cancer to accept what most five year olds know instinctively. It's a better way to be.
Thursday, January 26, 2012
A hot spot for a cold day
It's a dreary, damp, cold day in Ohio today...here's something that warmed me up. And while it doesn't target prostate cancer, it's in the area.
Watch all the way through! Warning...adult content.
Another one of those great British commercials that will never get airplay in North America. It sure as hell gets one’s attention and the message across.
Sent in the interest of public safety.
You may have to copy and paste into your browser...it's worth the effort!
http://adsoftheworld.com/media/tv/mcac_rhian_touches_herself
Watch all the way through! Warning...adult content.
Another one of those great British commercials that will never get airplay in North America. It sure as hell gets one’s attention and the message across.
Sent in the interest of public safety.
You may have to copy and paste into your browser...it's worth the effort!
http://adsoftheworld.com/media/tv/mcac_rhian_touches_herself
Wednesday, January 25, 2012
You be the judge
The following are a few more comments recently received...I try not to judge, but it seems the Masons of New Zealand are taking the more measured approach. Note: I have not altered, nor do I take responsibility for, spelling or capitalization in the following comments:
1) Greetings - The Grand Lodge of New Zealand has had a focus on prostate cancer (P.C.) awareness for a couple of years now with every Lodge in New Zealand holding open meetings with a invited specialist doctors to come and talk to Freemasons and their friends about P.C.
Gary Severinsen PM & Past Grand DC
2) I've heard of a man in Europe (Austria) with the general cure, using herbs. If need be, I can try and find a way to get in touch with him. Otherwise, one friend told me about a clinic in Texas, which has proven they've cured over 10k+ people. Here is some info, and the link to their site. Good Luck, stay happy and healthy.
Burzynski Clinic is a unique organization providing a wide variety of advanced cancer treatments, including Antineoplaston treatment and personalized treatment plans.At the Burzynski Clinic we offer a variety of Personalized Treatment options - advanced gene-targeted medications custom-selected for each patient, based on the identification of the ontogenesis involved in their particular cancer. We do not use the same old cooker-cutter treatment plans that you may find at other oncology facilities big and small. Our cancer therapies are groundbreaking, non-surgical, non or low toxic cancer treatment regimens, some available within clinical trials.
3) Stories abound..my aunt recently overcame a bout of cancer that almost had her..sloan kittering..and the mayo clinic had to surgically implant a metallic device to her liver..infused with chemo and medicine...it worked she is cured...however..what intrigues me ..are the stores of rene the canadian nurse whom with an extract of native american herbs made into a tea alledgedly cured over 30 million of cancer..i believe homeopathic as well as chemo and western medications work..it has to do with a build up of toxins in the body, that cause aggravated cell mutations and thus cancer..the key a clean system excercise..pleanty of sweating out toxins..a balanced diet..and a keen and happy mind..devoid of as much stress as possible..it may sound..too "vegan" hortocultural for some..but by god it works..
I understand the appeal of alternative approaches and the sincerity of those who espouse them. I understand, too, the desire to find a “magic bullet” for prostate, and other, cancer (particularly if traditional treatments have proven ineffective or offer no hope). I fear, however, some may unnecessarily delay treatment of what is often a very curable disease.
Sermon: Don't Delay! End of sermon.
1) Greetings - The Grand Lodge of New Zealand has had a focus on prostate cancer (P.C.) awareness for a couple of years now with every Lodge in New Zealand holding open meetings with a invited specialist doctors to come and talk to Freemasons and their friends about P.C.
Gary Severinsen PM & Past Grand DC
2) I've heard of a man in Europe (Austria) with the general cure, using herbs. If need be, I can try and find a way to get in touch with him. Otherwise, one friend told me about a clinic in Texas, which has proven they've cured over 10k+ people. Here is some info, and the link to their site. Good Luck, stay happy and healthy.
Burzynski Clinic is a unique organization providing a wide variety of advanced cancer treatments, including Antineoplaston treatment and personalized treatment plans.At the Burzynski Clinic we offer a variety of Personalized Treatment options - advanced gene-targeted medications custom-selected for each patient, based on the identification of the ontogenesis involved in their particular cancer. We do not use the same old cooker-cutter treatment plans that you may find at other oncology facilities big and small. Our cancer therapies are groundbreaking, non-surgical, non or low toxic cancer treatment regimens, some available within clinical trials.
3) Stories abound..my aunt recently overcame a bout of cancer that almost had her..sloan kittering..and the mayo clinic had to surgically implant a metallic device to her liver..infused with chemo and medicine...it worked she is cured...however..what intrigues me ..are the stores of rene the canadian nurse whom with an extract of native american herbs made into a tea alledgedly cured over 30 million of cancer..i believe homeopathic as well as chemo and western medications work..it has to do with a build up of toxins in the body, that cause aggravated cell mutations and thus cancer..the key a clean system excercise..pleanty of sweating out toxins..a balanced diet..and a keen and happy mind..devoid of as much stress as possible..it may sound..too "vegan" hortocultural for some..but by god it works..
I understand the appeal of alternative approaches and the sincerity of those who espouse them. I understand, too, the desire to find a “magic bullet” for prostate, and other, cancer (particularly if traditional treatments have proven ineffective or offer no hope). I fear, however, some may unnecessarily delay treatment of what is often a very curable disease.
Sermon: Don't Delay! End of sermon.
Tuesday, January 24, 2012
Up Yours
In thinking more about the article in February's "Scientific American," a very basic flaw struck me. In the discussion of testing for prostate cancer, I don't recall any mention of DRE (digital rectal examination)...a glaring omission. The importance of regular DRE cannot be overstated.
Ask Ken Jones who never had a PSA score above 2, yet a DRE presented as abnormal; during subsequent surgery, a tennis ball sized tumor was revealed growing outside the prostate. Note: Ken, feel free to correct and/or expand upon my recollection.
Certainly no one looks forward to the doctor snapping on the rubber glove and flexing, what feels like, his (or, God forbid, her...sorry, I've not evolved to that degree) fourteen inch finger...I'm quite sure the doctor isn't thrilled about it either. Yet it is, none-the-less, an indispensable diagnostic procedure.
However, just as one should not rely upon the PSA test in isolation (something the article fails to consider), the DRE is only one of a series of tests useful in constructing the profile of a patient's prostate health.
DRE is a simple procedure every adult male should insist upon at regular intervals. Let's begin a campaign to make UP YOURS a call to health!!
Ask Ken Jones who never had a PSA score above 2, yet a DRE presented as abnormal; during subsequent surgery, a tennis ball sized tumor was revealed growing outside the prostate. Note: Ken, feel free to correct and/or expand upon my recollection.
Certainly no one looks forward to the doctor snapping on the rubber glove and flexing, what feels like, his (or, God forbid, her...sorry, I've not evolved to that degree) fourteen inch finger...I'm quite sure the doctor isn't thrilled about it either. Yet it is, none-the-less, an indispensable diagnostic procedure.
However, just as one should not rely upon the PSA test in isolation (something the article fails to consider), the DRE is only one of a series of tests useful in constructing the profile of a patient's prostate health.
DRE is a simple procedure every adult male should insist upon at regular intervals. Let's begin a campaign to make UP YOURS a call to health!!
Monday, January 23, 2012
Scientific American meets Prostate Cancer
Over the weekend, I stopped at a bookstore for coffee and to look through recent magazines (I took “Plane and Pilot,” “American Handgunner,” and February's "Scientific American" (henceforward, SA). Opening SA, I was confronted with an article on Prostate Cancer...how timely!
The SA article focused on the controversies surrounding diagnosis and treatment with, what I'm choosing to cite as, three major themes: The controversy of PSA testing, the controversy of biopsy, and the controversy of existing treatment modalities.
PSA testing we know about...too many false positives resulting in...too many biopsy's which, even when cancer is present, do not provide enough information regarding the nature of the cancer identified resulting in...too many treatment procedures with their accompanying side effects and complications.
All of the above are valid concerns...and I couldn't care less. Once the biopsy confirmed the presence of cancer cells, for me there was no controversy...get this crap out of me!
Certainly our understanding is far from complete and our testing/treatment will be viewed as primitive in the not too distant future; I repeat, I could not care less. My experience, to date, has far exceeded expectations. If I could have been guaranteed that waiting would have no negative consequences, would I have delayed treatment? Perhaps, but no such guarantee exists.
The Scientific American article reports only 4% of prostate cancers will become aggressive and life-threatening. For all the others, there is no downside to delaying treatment. Those are mighty good odds...UNLESS you happen to be in that 4% for whom the number becomes 100%. At that point, I'm sure I would wish I had opted for one of the existing treatments. I'm just sayin'..........................
The SA article focused on the controversies surrounding diagnosis and treatment with, what I'm choosing to cite as, three major themes: The controversy of PSA testing, the controversy of biopsy, and the controversy of existing treatment modalities.
PSA testing we know about...too many false positives resulting in...too many biopsy's which, even when cancer is present, do not provide enough information regarding the nature of the cancer identified resulting in...too many treatment procedures with their accompanying side effects and complications.
All of the above are valid concerns...and I couldn't care less. Once the biopsy confirmed the presence of cancer cells, for me there was no controversy...get this crap out of me!
Certainly our understanding is far from complete and our testing/treatment will be viewed as primitive in the not too distant future; I repeat, I could not care less. My experience, to date, has far exceeded expectations. If I could have been guaranteed that waiting would have no negative consequences, would I have delayed treatment? Perhaps, but no such guarantee exists.
The Scientific American article reports only 4% of prostate cancers will become aggressive and life-threatening. For all the others, there is no downside to delaying treatment. Those are mighty good odds...UNLESS you happen to be in that 4% for whom the number becomes 100%. At that point, I'm sure I would wish I had opted for one of the existing treatments. I'm just sayin'..........................
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