I'm a bit all over the map on this issue. On the one hand I think we do OK in remembering that nothing we say here is, should be or could be professional medical advice. On the other hand I do think some of us sound too much like doctors, and it bugs me a bit but I am not sure why. Here are a couple of thoughts as they occur to me. Feel free to stop reading when you've had enough...
1) Those of us who sound like doctors tend to sound more like doctors than doctors do.
The central fact of prostate cancer is uncertainty. There are no guarantees to be found anywhere. It is a leading killer of men and yet a diagnosis of prostate cancer often does more damage to a man's life via anxiety and the resultant over-treatment than the disease would have done if it were never diagnosed. Because doctors know that categorical statements will often come back to them -- either in the form of litigation, or simply in the disappointment of their patients when things don't go as expected -- they tend to be leery of saying anything without a fair amount of equivocation. Those of us here on healing well who have an agenda feel freer to grind, grind, grind on their grindstone, making their points as sharp and focused as possible and to leave the caveats to their 'evil' opponents. They don't deny the uncertainties but they tend to ignore them.
2) If you think about it, Purg's neighbor, the retired bank exec, may well be more sensible than most of us.
He has managed to get prostate cancer, have it treated, and get it behind him without it becoming the central reality of his life. How many of us can say that? We tend to flatter ourselves on how smart we are, doing our homework, traveling thousands of miles to get a new type of scan that may, sometimes, show micro-metastases, poo-poohing mere local doctors and only insisting on the top practitioners in the field, in short doing everything humanly possible to make the odds as good as possible. But in the process prostate cancer devours our lives far more certainly than the mutant cells would devour our physical body. There is a short story by science fiction writer Norman Spinrad that should give us pause. Here's a link: hermiene.net/short-stories/carcinoma_angels.html
3) One of the reasons we bicker here on HealingWell has to do with the two ways we deal with uncertainty.
Some of us obsess about
making the uncertainty as small as possible. Let's call them "type 1" people. Type one guys study. They research. They are always on the lookout for anything that will give them another couple of percent chance of a favorable outcome. They crave a sense of control and the pursuit of information gives it to them. They tinker with their diets, their meds, their choices, they shop for doctors, they do their homework and they try to deserve
a good result. And when they finally have to act they willfully refuse to think about
the remaining element of luck. I wrote a thread here a while back (when I was still a troublemaker) that was entitled "Smarter to be Lucky" where I talked about
the irreducible element of luck in dealing with PCa. If I made you mad you are probably a type 1 person.
Type 2 people, on the other hand, are more sympathetic to the idea that the options available are often similar in prospect, or involve difficult-to-evaluate trade-offs. They like to have information to help them make their decisions (often provided by the type 1s) but it doesn't become a holy quest for them. They are more sympathetic to the idea that treatment choices may simply be matters of personal preference or convenience. They will understand what I said about
Purg's neighbor being a smart guy.
Type 1 people tend to see the primary purpose of this forum as education. They tend to focus their attention on newcomers who are still making a decision and see educating them as their reason to participate. When they run into bad luck with their own treatment they tend to be puzzled and angry. If their own treatment goes well they tend to attribute their positive outcome 100% to the excellence of their decision-making process (and to forget that they were lucky.) They can sometimes seem unsympathetic to other members who have made choices of which they don't approve. In arguing about
abstractions they are comfortable leaving them abstract and don't feel the need to personalize.
Type 2 people tend to see the primary purpose of this forum as support. In talking to newcomers they will try to make them less afraid, to show them that there are people who have been through their situation and are doing OK. They talk more about
their personal experiences and less about
research they have read. Since they see the side effects of treatment as being, at least in large part, a result of bad luck they tend to me more comfortable to talk to when one needs help coping with side effects of treatment already received. They find it easier to respect other member's treatment decisions and tend to feel less need to criticize other member's doctors. They are not given to characterizing the motivation of whole medical specialties as greedy attempts at deception.
When discussing abstractions like the number to treat to save one life, type 1 people are comfortable leaving abstractions abstract. They can weigh many lives damaged against a few lives saved and make a decision. This impersonality is their
defense mechanism. Even in their own treatment they are more comfortable thinking about
it from the outside in. If they are getting radiation, then while the beam is passing through their body they are mentally standing with the techs in the control room pushing the buttons and planning the dose. It's a bit like Spock deciding to be a Vulcan because sometimes being Human is too painful for him.
Type 2 people can't do that. Faced with the same abstraction they will personalize it. They will create a mental image of the various people, real or imagined, who would be affected and try to see the problem from their point of view. That's how they try to understand statistical abstractions, by imagining members of the populations and seeing how they are affected. Since I used a Star Trek simile for Type 1 it's only fair to say that Type 2 guys will always risk the Enterprise to get Spock out of the room flooded with radiation. After all, he was dieing
in there. That's why in real life Spock would make a better captain than Kirk and why it's a good thing that our HealingWell Type 2 guys don't get to make health care policy.
4) A member's real doctor has stuck his fingers up the guy's butt. We haven't.
Personally, I wouldn't want to. Not the way I roll. But that means that, even if I was as smart as the guy's doctor (possible) and I knew more about
prostate cancer than did his doctor (very unlikely) there are still things about
the member that his doctor knows that I don't -- and probably some important things I don't know I don't know.
5) Some problems are hard problems or interesting problems but it is prudent to remember that they are not our problems.
Some of us have a vice of sounding too much like doctors. I agree with that statement. Some of us complain too much about
other members who sound like doctors. That's true too. But there are some topics that are very much of interest to the medical community -- PSA screening, for instance -- that are simply not our problem to solve. None of us are
doctors. Thank God. Those guys have some thorny problems to solve.
Slow PSA rise 2007-2012: 1.4=>8
4 bxs 2010-2012:
1)neg (some inflammation),
3)positive 1 of 14 GS6(3+3) 3-4%, 2nd opinion GS7(3+4)
Mild Pre-op ED
DaVinci RRP 6/14/12. left nerve spared
Path: pT3a pN0 R1 GS9(4+5) Pos margins on rt
Start 24 mo ADT3 7/26/12
Adjuvant IMRT 66.6 Gy 10/17/12 - 12/13/12
Leaky but better, Trimix, VEDForum Moderator - Not a Medical Professional
Post Edited (PeterDisAbelard) : 5/30/2013 11:26:37 AM (GMT-6)