Yesterday I drove for an hour to attend a prostate cancer support group. Once I found the place, I couldn't find the group meeting place. Each room I was referred to was vacant. I then saw five men sitting around a table in an open area and walked over. Yes, this was the place. They had decided to move, but had not left a notice of that anywhere. Not an auspicious beginning. It soon got worse.
I had to tell my story, of course, but I didn't get all that far before the group, exclusive of the leader who seemed to be up on the topic and very open minded but had to leave to attend to business, took over. The basic story was that each of the four men there had already undergone some form of treatment, and, as far as I could tell, were not thrilled with the outcome. Some talked as if they were "cured" while others worried about remission. All complained about some undesirable side effect. Incontinence was barely mentioned but alluded to of course. The focus of discussion quickly moved to the need to make a decision on treatment and get on with it. Just the opposite of my belief.
I mentioned that one good thing about waiting on any kind of treatment is the likelihood of new and better options as medicine learns more about PC. While most of the men agreed that this was true, they didn't want to linger here. Their main focus was telling stories about their treatments, their doctors, and a little about side effects. There was much discussion along the lines of "what's your PSA? What's your gleason?" Sort of like, "what's your sign."
However, running through the conversations was the fact that all of them had been rushed into a treatment decision by their doctors. One man recommended that I go to a local doctor who was an "expert" in PC. I knew of this doctor. He is a radiation oncologist, and guess what, he favors early treatment with radiation. There was also a recommendation to see this robotic surgeon. "He's really good." There was discussion about needing both seed implants and general radiation together. Some gruesome tales of treatments of various kind. Only one of the group mentioned that he wished he had waited before jumping into treatments.
I also learned that one of the urologists I had been referred to is the guy who slammed one of the group with a 6-month effective hormone shot very soon after his diagnosis. Looking back, the patient wished he had taken the time to understand his condition and options, and the possible side effects of various treatments. He would not have acted so swiftly.
In the end, these men validated what I have been learning. Most doctors will treat PC, regardless of it's severity, as something that needs treatment rather quickly. Their recommended course is whatever their specialty happens to be, naturally. Regardless of the fact that men with high risk factors are no more likely to die within ten years than are men with low risk factors. And, the likelihood is around 5%.
In addition to all this, little discussion was made of the risks of these radical treatments, especially surgery, on older men. One of the guys suffered a severe infection resulting from a biopsy, but this didn't raise any red flags. Probably because, other than him, the rest had escaped serious consequences, or didn't talk about them.
So, rather than support, I felt depressed. I need a group of men who are more understanding of PC and modern thinking on the subject and some who are refuseniks like me who prefer to keep their quality of life and wait.
I know this sounds harsh, but the general impression I left with is that these men are afraid to die. Now, I am fearful as well, but I also know that dying is the natural end of life and the manner in which we choose to live, and to die, matters. Undergoing long and difficult treatment processes, with life-altering after effects that seriously degrade those few years left does not seem worth it to me. If I was not seventy years old, I might think otherwise.
One of the men, the least educated of the group, but probably the most perceptive, said something to the effect that it really doesn't matter. You might get killed by a car tomorrow.
Exactly.
Showing posts with label risk. Show all posts
Showing posts with label risk. Show all posts
Wednesday, May 15, 2013
Monday, May 13, 2013
Support Group Meeting
Tomorrow I'm driving to Pueblo, Colorado to attend my first UsTOO support group meeting. I've never been strong on groups. All of the groups and clubs I've joined in the past have been duds, except for one, which isn't so much a club as a like-minded bunch who enjoy getting together each month and talking about their favorite hobby.
I suspect this PC support group will be different. Prostate cancer isn't a hobby. It's a reminder that life is short, we are all mortal and the journey will end sooner or later. I think having PC is a good thing in that it brings the doorway into view for the first time. We all know it's out there, the door to the undiscovered country, but I think most of us don't really believe it. Too far in the future (whatever that is), too abstract and mostly something other people have to experience. Not any more.
The more I think about this, the more I am convinced that as Lincoln was supposed to have said, "It's not the years in the life, but the life in the years." I am not signing up for a short segment of life lived with awful and undignified side effects. Personal quality of life and medical ethics should intersect in a doctor's office, although it has been my experience that it most often does not. And, from the source materials I read, especially the book, The Invasion of the Prostate Snatchers, that healing intersection does not exist for the majority of health professionals dealing with men with prostate cancer.
One of the authors of The Invasion of the Prostate Snatchers, diagnosed with PC and unwilling to be pushed into surgery, was told variations on, 'you are stupid', 'you'll be dead in a year', 'we'll schedule you for next Tuesday." Although during the diagnosis meeting, I got the signs that my urologist was harried, new to the profession, pushy and totally unfamiliar with doctor-patient relationships and the caution to 'do no harm' and fired him later than I should have, reading his notes later told the same sad tale. Even though my incidence is low-grade and low risk with no evidence of the cancer spreading anywhere else, he noted that he thought I shouldn't do watchful waiting because, "of the risks". He didn't bother to elaborate on what those risks are. Probably because they are low to non-existent, given my condition and age.
A 2008 study by the Mayo Clinic published in the Journal of Urology, April 2008 shows that only 2% of men with Intermediate-Risk and only 5% of men with High-risk PC die from it within ten years. So, given my Low-risk status, and age of seventy years, what kind of risk drove my urologist to state that I should undergo surgery because of the "risks"? I think one of the reasons might be that he wants to operate. That's what he does.
Right after the diagnosis in his office, accompanied by "facts" from my tests and biopsy fired at a machine gun rate, without benefit of consulting or explaining the actual findings themselves (he kept all of the paperwork to himself) he launched into a commercial for robotic surgery, which, it turned out, he was specializing in. He didn't spare the details, although all of his details were good. He didn't talk about the dark side, possible complications of the surgery itself, the extreme difficulty of doing the surgery right even for those who were vastly experienced and capable. Which he was not. He didn't mention that one of the most imminent urologists in the country stated that the would only operate on a man over seventy if both of the patient's parents were also in the OR. Like, never happen.
I subsequently learned that in order for a surgeon to be very good at robotic PC surgery, the average level of experience needed is 240 operations. Taking into account the number of years my guy had been in practice, multiplied by the standing of the medical school he'd graduated from, I figured he was going to need another ten or fifteen years before he would be at the level I'd trust to even seriously consider him doing such a procedure on me.
One of the big reasons I want to attend the support group meeting is that I need the reality-based opinions, knowledge and experience of others who have gone down this road before. It is too often the patient, hearing the words, "you've got cancer", is so vulnerable that he is too open to bad advice given by authority figures at the time. Good thing for me that I am stubborn, cynical and a born "refusenik", to use Ralph Blum's term, or I might have put myself in the hands of a doctor who was not so much concerned about the overall health and well being of his patient, but his own career and practice. If I sound harsh, well, it is a harsh reality.
It's a minefield out there and you have to choose your path carefully. Make sure it is your path, not someone else's. After all, it's your life to live how you choose.
I suspect this PC support group will be different. Prostate cancer isn't a hobby. It's a reminder that life is short, we are all mortal and the journey will end sooner or later. I think having PC is a good thing in that it brings the doorway into view for the first time. We all know it's out there, the door to the undiscovered country, but I think most of us don't really believe it. Too far in the future (whatever that is), too abstract and mostly something other people have to experience. Not any more.
The more I think about this, the more I am convinced that as Lincoln was supposed to have said, "It's not the years in the life, but the life in the years." I am not signing up for a short segment of life lived with awful and undignified side effects. Personal quality of life and medical ethics should intersect in a doctor's office, although it has been my experience that it most often does not. And, from the source materials I read, especially the book, The Invasion of the Prostate Snatchers, that healing intersection does not exist for the majority of health professionals dealing with men with prostate cancer.
One of the authors of The Invasion of the Prostate Snatchers, diagnosed with PC and unwilling to be pushed into surgery, was told variations on, 'you are stupid', 'you'll be dead in a year', 'we'll schedule you for next Tuesday." Although during the diagnosis meeting, I got the signs that my urologist was harried, new to the profession, pushy and totally unfamiliar with doctor-patient relationships and the caution to 'do no harm' and fired him later than I should have, reading his notes later told the same sad tale. Even though my incidence is low-grade and low risk with no evidence of the cancer spreading anywhere else, he noted that he thought I shouldn't do watchful waiting because, "of the risks". He didn't bother to elaborate on what those risks are. Probably because they are low to non-existent, given my condition and age.
A 2008 study by the Mayo Clinic published in the Journal of Urology, April 2008 shows that only 2% of men with Intermediate-Risk and only 5% of men with High-risk PC die from it within ten years. So, given my Low-risk status, and age of seventy years, what kind of risk drove my urologist to state that I should undergo surgery because of the "risks"? I think one of the reasons might be that he wants to operate. That's what he does.
Right after the diagnosis in his office, accompanied by "facts" from my tests and biopsy fired at a machine gun rate, without benefit of consulting or explaining the actual findings themselves (he kept all of the paperwork to himself) he launched into a commercial for robotic surgery, which, it turned out, he was specializing in. He didn't spare the details, although all of his details were good. He didn't talk about the dark side, possible complications of the surgery itself, the extreme difficulty of doing the surgery right even for those who were vastly experienced and capable. Which he was not. He didn't mention that one of the most imminent urologists in the country stated that the would only operate on a man over seventy if both of the patient's parents were also in the OR. Like, never happen.
I subsequently learned that in order for a surgeon to be very good at robotic PC surgery, the average level of experience needed is 240 operations. Taking into account the number of years my guy had been in practice, multiplied by the standing of the medical school he'd graduated from, I figured he was going to need another ten or fifteen years before he would be at the level I'd trust to even seriously consider him doing such a procedure on me.
One of the big reasons I want to attend the support group meeting is that I need the reality-based opinions, knowledge and experience of others who have gone down this road before. It is too often the patient, hearing the words, "you've got cancer", is so vulnerable that he is too open to bad advice given by authority figures at the time. Good thing for me that I am stubborn, cynical and a born "refusenik", to use Ralph Blum's term, or I might have put myself in the hands of a doctor who was not so much concerned about the overall health and well being of his patient, but his own career and practice. If I sound harsh, well, it is a harsh reality.
It's a minefield out there and you have to choose your path carefully. Make sure it is your path, not someone else's. After all, it's your life to live how you choose.
Sunday, April 7, 2013
Bone Scans
After a rather extended and clinical discussion with my doc on the first day that I received the news about having prostate cancer, I left with the basic information that my risk is, "moderate-low". There was discussion of Gleason scale numbers, which are skewed to some extent in a manner that makes them rather difficult to understand. I did find out through other references, that the diagnostic procedures, tools and algorithms are all estimates. Some are estimates based on estimates. Oh, good.
The doc, as almost an afterthought, scheduled a bone scan x-ray at St. Mary Corwin hospital in Pueblo. I did this last week. It's a relatively painless procedure. The tech/nurse was an artist with an IV. I actually did not know that the needle was in until I looked. "Working on the painless needle stick," he said. Well, I think he's got it down.
I laid out on a long table that fit within a moving apparatus shaped like a high-tech donut. Had to remove all the metal objects from my pockets, and the belt, but kept my boots and clothes on. Took thirty minutes for the scan, and I fell asleep a couple of times. Then, Barb and I had a Chinese food lunch and drove home.
Next day, the Urologist office called to schedule a follow up appointment. Well, I said, I'd rather have a phone consult since I have to drive two hours and spend gas money to sit in his office and hear the same thing he can tell me over the phone. Sorry, they can't do that. I had her talk directly to the doc, but no, he won't do that, so I have to go back in on Tuesday. They wanted to schedule the follow up out about three weeks, but I want the news sooner than later.
Since this is the time in our lives when we are routinely using phones, text messages, email and the internet for almost everything, I would like to understand the reason why office visits are necessary. Is is a liability thing? Are the lawyers and insurance companies at it again?
The doc, as almost an afterthought, scheduled a bone scan x-ray at St. Mary Corwin hospital in Pueblo. I did this last week. It's a relatively painless procedure. The tech/nurse was an artist with an IV. I actually did not know that the needle was in until I looked. "Working on the painless needle stick," he said. Well, I think he's got it down.
I laid out on a long table that fit within a moving apparatus shaped like a high-tech donut. Had to remove all the metal objects from my pockets, and the belt, but kept my boots and clothes on. Took thirty minutes for the scan, and I fell asleep a couple of times. Then, Barb and I had a Chinese food lunch and drove home.
Next day, the Urologist office called to schedule a follow up appointment. Well, I said, I'd rather have a phone consult since I have to drive two hours and spend gas money to sit in his office and hear the same thing he can tell me over the phone. Sorry, they can't do that. I had her talk directly to the doc, but no, he won't do that, so I have to go back in on Tuesday. They wanted to schedule the follow up out about three weeks, but I want the news sooner than later.
Since this is the time in our lives when we are routinely using phones, text messages, email and the internet for almost everything, I would like to understand the reason why office visits are necessary. Is is a liability thing? Are the lawyers and insurance companies at it again?
Subscribe to:
Posts (Atom)