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Wish we all could be like Squarf....his PCa story and flipping the bird at treatments (lol)

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Prostate Cancer
Is Squarf a wild man???
Nope - 25.0% - 4 votes
Yeap - 6.3% - 1 votes
partially insane - 25.0% - 4 votes
a genius - 12.5% - 2 votes
rebel with a prostate - 12.5% - 2 votes
needs a reality t.v. show - 18.8% - 3 votes
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Posted 3/26/2013 5:12 PM (GMT 0)
Not saying others of us can get away with this darn the torpedos mentality, but he apparently has gotten the last laugh as far as 14 yrs. of PCa history is concerned.  It is a unique story and he has a special type of attitude that is actually on the side of humorous, I enjoy a good rebel with a cause now and then.  Consider this just interesting reading and not something, that you would likely do on your own case. This is posted at yananow and been there for years now. Here's the story:

http://www.yananow.org/Squarf.shtml

He is now 81 or so years old, last yananow reply was 2011 on his World according to Squarf!!!!  tongue

Posted 3/26/2013 5:43 PM (GMT 0)
Good story. I have adopted a similar attitude and wish I had done so before my treatment. I do not have nor have I ever had a symptom of PCa. Now after hormone and radiation I have stopped all treatment and do not plan to continue unless I have symptoms. Who knows... it is all a crap shoot anyway.

Don
Posted 3/26/2013 5:59 PM (GMT 0)
Zufus, thanks for posting this. It makes for a great read as far as my own philosophy is concerned. I guess without knowing him, I have joined his fan base. I am taking my 36 PSA (at last testing in Oct 2012) and just living my life. The future will hold what it will and I may be faced with future decisions, but for the time being I am choking the life out of every one of my "Bonus Days".

Thanks again,

Sonny
Posted 3/26/2013 6:24 PM (GMT 0)
With every argument there is always an opposite viewpoint.

This analogy came to mind while reading the Wild Man's (or not Wild man's) story. Maybe it's a bit silly, but read on.

Suppose there was a ticking black box on your kitchen table. You are told that it may or may not be a bomb. If it is a bomb, it may or may not go off. You are given a choice. You can pick up the ticking black box and take it to the empty field next to your house and leave it there. If it explodes there it won't hurt anybody. But there's a catch, if you take it to the field, there's a good chance you will sprain your ankle stepping in a hole in the field.

Or, you can leave the black box on your kitchen table, assuming it isn't a bomb, or, if it is a bomb, that it won't go off.

But if you leave it on your table, you will have to listen to it going tick-tock-tick-tock all the time, night and day, with no end. Possibly driving you crazy.

Which would you prefer to do? Take it to the field and leave it there, but maybe spraining your ankle at the same time, but then returning to your house relieved, knowing it can never blow up and hurt you, or, keep it on your table, listening to the constant tick-tock-tick-tock, and knowing that it may or may not ever explode? Possibly driving you crazy.

No right or wrong answer on this one, but your decision will say much about you, and how much of a Wild Man (or not) that you are.
Posted 3/26/2013 6:51 PM (GMT 0)
Thanks zufus,
No question that PC is vastly over-diagnosed and over-treated, and it often is insignificant and follows an indolent course. We are more likely to die with it than of it. That was a good reminder of the basic natural history facts.
Posted 3/26/2013 7:31 PM (GMT 0)
Thanks your replies (brothers), Sonny and Don a man has to consider plenty and decide your own course, especially when there just isn't a guarantee or some chartered course like from like Columbus to get us to safer water or dry land. One of the warriors just passed away a day or two ago Merle P., and Tony C. would know his story the best.....but he went into home hospice and was given a few months to live (he decided enough of all the lousy treatments and side effects), well he sure showed them about the will to live, he lived 2 years into that course he decided upon. Alot of different risk levels and prognosis's within PCa, sometimes not easily defined for the patient to know where you stand. My brother has only watched his indolent case for about 9 yrs. now and so far, so good for him (no treatments).

Tall- as Dr. Strum mentioned years ago, the tigers and kittycats versions of PCa, a lesser number of patients are in the high risk, high stats, scenarios....but for them it is the sword of Damacles.
Posted 3/26/2013 9:18 PM (GMT 0)
I think it's highly likely Wild Man never did have PC, or much PC, just an elevated PSA from an infection or some other source. If he'd actually had a biopsy that indicated intermediate or higher PC, and chosen the path of ignoring it, then I'd say he had real balls--on top of being an idiot. As it is, there's nothing to learn here except that this guy's a real blowhard.
Posted 3/26/2013 9:44 PM (GMT 0)
I like stories about people who take a non-conventional path whether it has to do with health, finance, retirement or whatever. Thanks for posting it.

I think given his stats and age, he very likely had prostate cancer. I don't think it is that outside the realm of possibility that there are a percentage of men whose prostate cancer will remain relatively stable throughout their lives. That being said, taking the chance that you are one of them to this extent is probably like rolling the roulette wheel. However, it has given me something to think about - especially since I just booked another biopsy with my urologist.
Posted 3/26/2013 9:46 PM (GMT 0)
Lorenzo Q. Squarf is an example about how men can be confused when the the writer is very expressive, funny and with magnificent verbosity fails to clearly mention that he was never diagnosed with prostate cancer because he never had a biopsy. He ASSUMED he had it and avoided both a biopsy and unnecessary treatment. Wished that was the case for most of us...

RalphV
Posted 3/26/2013 10:53 PM (GMT 0)
A significantly declining PSA tells me that he never had it, or not enough to be such a braggart over not doing anything about it.
Posted 3/26/2013 11:30 PM (GMT 0)
81GyGuy,

I like your story, but I think that's only the case for a Gleason 6 bomb. In the Gleason 9 bomb, it's taken off the table, we sprain our ankle as it is taken to the big yard, and we go back to the house...only now the tick-tock is still heard after everything is done, and we know that the bomb is so explosive it doesn't matter how far from the house it is...we're going to be hurt.

I'm just trying to add a longer fuse and/or disarm it.

Jerry
Posted 3/26/2013 11:51 PM (GMT 0)
Jerry L. -

Very good point very well made, and taken.
Posted 3/27/2013 1:21 AM (GMT 0)
zufus,

add me to the list with don and sonny, I am sticking by my oncologist's advice of being a "watcher" at this point after failed surgery and failed radiation. won't be any future treatments until there is a verified reason to do so.

great story you highlighted

david
Posted 3/27/2013 3:21 AM (GMT 0)
I don't get the appeal here. This guy ignored conventional medical wisdom and has been lucky so far, that's all. Is that smart, or even ballsy? To me, it's just bullheaded stupidity. He forgoes a simple biopsy, which will give him the real information he needs, because he doesn't have the stomach for it. Does he always ignore the advice of his medical professionals? He gets lucky in this case--so far--and we have to listen to how much smarter and braver he is than everybody else who has taken action to try to keep from dying of PC. If the toss of the coin came up differently and he was dealing with the effects of metastatic cancer, somehow I don't think we'd be hearing from his self-congratulatory ass. He considers 30,000 deaths a year from PC negligible, but what would that number be with no treatment for anybody? Apparently, there IS overtreatment for low-risk PC. Is Squarf the poster boy for how to deal with it? I don't think so.
Posted 3/27/2013 10:23 PM (GMT 0)
Nice and unusual story. One thing that seems difficult to grasp though, is his claim that all along he has had no issues or symptoms from his urinary tract. At "diagnosis" his prostate was enlarged, so you would think that BPH or PC would, in the last 14 yrs give him some sort of urinary trouble. We will never know, and he will never know as he is not interested to know, but it is quite possible he has PC and is alive and well after 14 yrs. And he would not be a lone and unusual example of that.
Posted 3/28/2013 3:21 AM (GMT 0)
I suspect that he is a little more ballsy in print than in reality. I would be very surprised if he hadn't gone through some trying times of self-reflection. I think basically he made up his mind to accept the consequences if he was wrong in order to continue with his lifestyle as long as possible. Not an easy decision and no more worthy of praise than someone who decides to seek treatment in order to share as much time with their family as possible. But also equally valid.

He touched upon statistics and it got me thinking that I would like to see more raw stats from people with no emotional or economic ties to the disease. Just raw stats from boring statisticians. I've been googling to see what's out there but it is very difficult to find statistics that aren't backed by a self-interest group. And perhaps some stats that I would like to see don't have enough of a sample size to be valid. For example, it would be interesting to know the average life expectancy of a Gleason 6 patient who followed Squarf's route (after an initial biopsy confirming Gleason 6) compared to someone who went for treatment and someone who followed AS.
Posted 3/28/2013 3:48 AM (GMT 0)
Regardless of whether he actually had PC or not... it was a very intriguing read!

I dug a little farther and read much of his archived web site. He certainly is a very entertaining writer and gives much food for thought on many things aside from PC.

I like the guy! :)
Posted 3/28/2013 4:32 PM (GMT 0)
I didn't have to get any farther than his assertion that "prostate cancer is a trifling disease" to see that Squarf was full of it (and himself.)

And after all of his self-congratulatory braying, he summarizes with these pearls of wisdom:

1) "We are all going to die eventually and from something;" (Brilliant. So why do anything about anything?)

2) "Nothing has ever been proven to lengthen the life of a PCa patient;" (Pure BS. PCa mortality is dropping like a rock from early detection and treatment.)

3) "Virtually everything that is done to interfere with real or imaginary PCa has horrific side effects ... and if they don't, then they are truly extraordinary exceptions." (More BS. The SE's for most are quite manageable, probably more so than those of being grossly overweight as is so much of the population. What IS horrific is dealing with the consequences of metastatic disease.)

To conclude, his advice is not to treat (he calls it "interfere with") PCa at all. Thank you, Dr. Squarf. And of course, with all of his bragging about how smart he's been about it, there's not a shred of evidence that he ever had any to begin with!

Post Edited (Phenom) : 3/28/2013 10:48:09 AM (GMT-6)

Posted 3/28/2013 4:56 PM (GMT 0)
Phenom -- ROFL!  choose your heroes wisely.  my heroes are proactive.  i can tell you a story of a guy who blew off his cancer and now that he is really sick and wants to be treated it's too late -- but you all probably know someone like that.

ed

 

Posted 3/29/2013 4:28 PM (GMT 0)
 

Mind over matter, if he doesn't mind I guess it doesn't matter. We all have our own reasons for the treatment protocol we chose. Here's hoping that everyone will win their battle!

yeah BB

Posted 3/29/2013 4:43 PM (GMT 0)
With out a bona fide diagnosis, the whole " legend" tells me zip about courage or grace…. with a diagnosis, even less, as these qualities are silent…...
Posted 3/30/2013 12:16 AM (GMT 0)
Ya' ever have one of those threads you started and later, thought maybe that wasn't the greatest topic to bring up???? As Larry the cable guy would say 'Lord I apologize'.....it was obvious that Squarf's thing is highly controversial as many PCa issues really are. I don't personally suffer from S.S. = Squarf Syndrome and do not decide such things on the flip of a coin or a gut feeling. I do have some rebel in me though and maybe a few similar chromosomes that other S.S. patients might have, but they are not a match and a different profile (lol). So I have not been abducted or Squarf'd by anyone, just to be on the record as to this particular, thread.
Posted 3/30/2013 3:57 AM (GMT 0)
Hey Zufus, we know…. You are just a wild and crazy guy……..
Posted 3/30/2013 1:50 PM (GMT 0)
Even they occasionally "hit a nerve", I think it is healthy to expose ourselves to outlier attitudes be they in one direction or the other and regardless of the topic. While such attitudes are by their nature usually wrongheaded, many and perhaps even most big leaps in progress come from what first appear to be renegade and even ridiculous opinions. One that comes to mind is ulcers where the consensus was that this was an ailment that one was doomed to suffer from for their lifetime until one "renegade" doctor proposed that they were usually caused by bacterial infections.
Posted 3/30/2013 4:02 PM (GMT 0)
Squarf's attitude toward medical intervention is not uncommon. I have a friend who believes that any concession to signs of apparent illness is giving in to it, and he bulls his way through colds, flu, etc., by continuing his normal routine no matter how bad he feels. He laughs at the idea of doctors, physicals, tests, shots, etc., and has smoked nonstop since he was a teenager, almost 60 years ago now (he's 72.) So far this has worked out for him. Me, when I'm not feeling good, I can't wait to get into bed and take whatever will make me more comfortable until it passes. Another smoker friend came down with apparent lung cancer in his early 60s and never did go to a doctor, dying at home when he couldn't breathe any more. To each his own, and good for Squarf that he's doing so well, but as I said originally, I don't think there's anything to learn from him. I assume that Squarf would never allow invasion of his body for a colonoscopy or any other invasive test, and maybe not for preventative shots, either, and that just doesn't seem very smart to me, just as not getting a biopsy to see whether and what kind of PCa he might have seems like putting your head in the sand. I really don't care what other people choose to do, but Squarf's attitude reeked of such self- congratulations for being smarter than the rest of us who have foolishly fallen prey to the conventional wisdom and suffered the consequences. That's what bothered me. In fact, I'm not sure why he ever posted about PCa in the first place when there was never any evidence he had it. But if he did, he's been lucky, that's all, and nobody should pretend his story proves anything more than that.
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