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An article designed to anger all of us with PC

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Posted 3/4/2010 2:53 PM (GMT 0)
Well, these guys with the new guidelines would have killed me. Mine was caught just in time with the PSA at just an early enough stage to be treated.
Posted 3/4/2010 4:35 PM (GMT 0)
Is there no one on this board who understands that this is a complex and nuanced

public health issue with compelling arguments on all sides (and, yes, there are more than two sides)?

Zen9

Posted 3/4/2010 5:06 PM (GMT 0)
Zen I agree there are at least 2 sides and maybe more. Even with tx you will find a lot of pros and cons regarding tx and quality of life issues. For me it was having a very good PCP who saw a spike in the PSA but a normal DRE. At that point she was wise enough to refer me to a urologist. The PSA was 3.5 but the year before it was 2.5. With a Gleason 8, robotic surgery and now IMRT I am forever thankful for her wisdom. Men are somewhat famous for avoiding Dr.'s and the dreaded DRE so any info that encourages that avoidance seems to me to do more harm than good. Just my take.

Michael

Posted 3/4/2010 5:20 PM (GMT 0)
My PCP was a strong believer in not doing screening PSAs. If not for a required insurance physical I would not have had a PSA and treatment until parts fell off. My PSA was 17 and rose to 23 within a few weeks.

Nowhere in that survey did I see mention of Quality of life issues. Just life expectancy.
If I had been given a screening PSA a couple of years ago maybe a would not be sitting here in a diaper and sticking my bits with a trimix loaded syinge.

I want to know if there were any men on the committee who did not know their PSA.
Jeff
Posted 3/4/2010 5:24 PM (GMT 0)
 

I agree this type of article will scare men away from needed testing.  I am glad that my doctors felt it was necessary to keep testing even when my PSA was never above 4.0.

My final pathology was a Gleason 8 the testing hopefully gave me many more years.

Jerry1

Posted 3/4/2010 5:44 PM (GMT 0)

Zen9 said...

Is there no one on this board who understands that this is a complex and nuanced
public health issue with compelling arguments on all sides (and, yes, there are more than two sides)?


Zen9


I would absolutely agree. It is complex, nuanced, and emotional. Waiting for the emotional furor to subside...

There are parts of the ACS statement that I agree with, and part I don't agree with. Dealing with public health on such a massive scale, they have "dumbed-down" the position statement too far and not taken into proper consideration the nuanced, complex scenarios.
Posted 3/4/2010 6:09 PM (GMT 0)
The American Cancer Society has not, for well over a decade, recommended routine PSA testing - only that the testing be made available to men 50 and older.
Posted 3/4/2010 7:08 PM (GMT 0)
I don't think we need to tweak the ACS statement and position to make them look good. From the responses here, and we are just a small, but probably typical sampling of men dealing with PC, it's overwhelming in favor of PSA testing, early testing, and DRE's as well. Most of us are survivors right now because of PSA testing. Can't speak for all, but most are probably glad to be alive and fighting this cancer, then to be in the dark and not even know they have it. There may be an exception here and there to that.

I am just a regular joe, nothing special, no great fame or name, for me, without the standard testing of my PSA simply being checked off on a blood lab paper at age 50, I would be numb and dumb to the prescence of PC. There's no telling what a raging unstoppable storm I would have going on in my prostate region at this point.

I feel that every man has the right to know, do I or do I not have cancer. What that man does with that dx. is his business, but he has the right to know.

The medical profession, insurance companies, etc, don't have a right to dictate what we can or can not know about a disease in our body, and all the twisting of stats in the world isn't going to make that disapear.

We need to keep standing up, keep warning and educating other men in our live's paths, get tested, get DRE, at least have the option of knowing what is going on inside your own body.

David in SC
Posted 3/4/2010 10:44 PM (GMT 0)
Here are the new guidelines, which urge doctors to:

• Discuss the pros and cons of testing with patients, offering written information or videos that discuss the likelihood of false test results and the side effects of treatment.

• Stop routinely giving the rectal exam because it has not clearly shown a benefit, though it can remain an option.

• Use past PSA readings to determine how often follow-up tests are needed and to guide conversations about treatment.

I'm fine with the recommendations, and think some people are misreading or overreacting. The media outlets also seem to be fanning the flames for the sake of readership/viewing audiences.

Starting at 50 my primary care physician started talking more seriously to me about prostate cancer. He also started the PSA tests then. The DRE has always been used - during my lifetime - and probably something drilled into the heads of the physicians in medical school. When my cancer was confirmed by biopsy, and later by my surgery (at age 59), the DRE indicated nothing unusual.

For a couple of years my PSA results were rising and when in a one year period they jumped a bit more quickly than in previous years my physician had a long talk with me and suggested consultation with a Urologist for a follow up. Nothing out of the ordinary was revealed by the Urologist's DRE exam. However, he told me his instincts told him something wasn't right and he asked for permission to conduct the biopsy - which revealed the cancer. I'm thankful my doctors were pro-active because what they also thought, after the biopsy, was a small amount of cancer turned out to be something which occupied 20% of my prostate.

So, I think my physician and Urologist were already following the "new" recommendations and I'll be surprised if many other physicians/specialists haven't been doing the same thing for a long time now. And rather than focus on what the medical community is already doing the media focus has been on things it says are new or challenging to the status quo.

The early PSA testing, the biopsy and the resulting surgery have all contributed to what I expect to be a longer, healthier and happier life. Had the cancer remained in my body and spread elsewhere my options for removal/control would likely have been diminished along with my quality of life.

The American Cancer Society is shooting itself in the foot. If it cannot better handle its reports and better convey helpful messages - whatever they be - then maybe it's time to shut it down and support other, more worthwhile organizations - because the fiasco this week is likely to lead to some unnecessary deaths.

Also, too, I'm troubled that some people value their sex life over their life overall . . . and that they'd avoid testing or treatment just so they could continue to have sex. Such behavior/thinking is selfish and ignorant, IMO.
Posted 3/5/2010 2:01 AM (GMT 0)
Mavica, I think the last two lines of your post should be the subject of a whole seperate thread here sometime. Its a point that I think is sometimes missed, and with some new guys here and there in the past year, you can see that the "sex" aspect was over riding common sense and sound reasoning about having and living with PC. I commend you for stating it so bluntly. It needed saying.

David in SC
Posted 3/5/2010 3:00 AM (GMT 0)
I went to the Uro with symptoms of what I thought was BPH. Guess I'd seen too many Flo-Max commercials. He prescribed that and it worked immediately. Went back in a week, and he asked if I'd had a Psa done the previous week. Nope. He did one and it came back 13.5. Lab error? Let's do another. 14.5...followed by dre, biopsy, ultrasound, the whole 9 yards. Went through DaVinci, IMRT ,when I had a 3 month doubling time, and here I sit 1 1/2 years later, writing this to all of you good people, but still alive and knowing that there are several of you who have had experiences worse than mine. Am I one of the lucky ones? Who knows?
The point is that I had a doc who had the insight to ask the questions and find the answers. Hopefully, there are many of them out there who go with their gut and don't heed the "guidelines".
Perhaps in the future they'll come up with something that will prevent our children and grandchildren from having to go through this sort of thing. As a favor to me, my 31 yr. old son had blood work done last week and I asked him to do a Psa. It came back 0.4. He promised to do one a year at his physical.

Stay strong, my friends. Put on your socks, and pull up your jocks. We've got a long way to go.

Bob
Posted 3/5/2010 3:15 AM (GMT 0)
Bob, that was good of your son. My oldest boy will be 33 this year, and when he has his physical, he has promised to get his first PSA as a base line. My youngest, at 26, will do so around the same age as his brother. I would never want them to go through this hell of PC.
Posted 3/5/2010 5:14 AM (GMT 0)

Zen9 said...

Is there no one on this board who understands that this is a complex and nuanced
public health issue with compelling arguments on all sides (and, yes, there are more than two sides)?


Zen9



My major objection to the ACS pronouncements is because it further confuses an already muddy issue. The guidelines make the assumption that most men are too stupid to have a simple baseline test and then deal rationally with the results. The people on this forum have taken the time to learn about their disease and then try to find a solution that they can deal with. I have confidence that others can do the same.

Historically the American Cancer Society has been motivated by $$$$ money. They raise millions and spend only a small percent on meaningful cancer outreach. Their greed makes me sick every time I hear their "pitch".

The ACS should stay out of the fight. They are not neutral. They have a dog in this fight. The are the epitome of special interest. When they issue recommendations like these, they are sacrificing real people's lives. If I was one of the 20,000 + men who die each year and it was because of the ACS guidelines, then my family should have recourse to some of the illgotten gains that ACS has in it's coffers.

You are correct that there are many ways to deal with prostate cancer. Being ignorant should not be one of them. That is what the ACS is telling our doctors is best.
Posted 3/5/2010 1:38 PM (GMT 0)
Bravo, Lifeguyd - excellent post.

Years and years ago, my dear mother (who passed from advanced breast cancer after a 3 year fight) always said that a cure for cancer would not be found (or at least announced) because there is far too much money tied up in cancer research and treatment. Cancer is political and definitely big business.
Posted 3/5/2010 3:19 PM (GMT 0)
lifeguyd, excellent response, you hit the head of the nail with that one.
Posted 3/5/2010 4:31 PM (GMT 0)
My father was diagnosed with PC at 52. I was at 53/4 (I had a birthday in the middle)
When I called my dad after I was diagnosed he said, "Call your brothers."
His advice means a whole lot more than the ACS.
The younger one's doctor thought he was crazy asking to be checked. A quick review of the family history shut him up.
The only question we all have is - Who do we consider our brother?
Posted 3/5/2010 9:18 PM (GMT 0)
My first indication of PC was on a yearly physical when my PCP went over my labs. When she got to the PSA it was 4.1 and she said I had a 30% probability of PC. I was shocked, I never even thought about PC or the PSA until then. She referred me to a urologist, and the rest is history.

If she had asked me before the labs if I wanted a PSA test, given the false positives, etc, I probably would have said no, forget it. And if she had given me a counseling session with the 4.1, telling me about that I probably didn't have PC, that my chances for life threatening PC was low, there were a lot of side effects from treatment, etc, I would never have gone to a urologist. That is, if she had followed those new guidelines I would be screwed big time now.

As it was, I had aggressive PC, and it was removed just in time through daVinci. Just another three months and it would have escaped.

So with all due respect, I say nuanced schmuanced. Cancer is a potential killer, and you have to hate it with a passion and go after it aggressively at first sign.
Posted 3/5/2010 9:56 PM (GMT 0)
Well the article didn't make me angry but kind of sad that I went crazy over a cancer that maybe would never hurt me and now the surgery I had has resulted in impotence requiring trimix injection for normal sex. However I have to think of it this way to ease my mind. There ARE men dying of prostate cancer, figures for '07 in US were at 27,000. Now maybe there are 10 times that number of men who have prostate cancer (just making that number up for example) and nothing is going to happen to them. So the odds are that if we do have prostate CA and stick our  heads in the sand  and don't have PSA testing and don't know about it that we'll be ok. I don't think anybody would dispute that. So it comes down to what kind of a gambler am I.  Should I just forget about the possibility of the aggressive pca because its so rare compared to the slow growing kind and take my chances? I don't think I could do that but many others can.  I respect guys who can do that and sleep well at night. That's really what this whole discussion is about.

    If we do go ahead and have psa tests with biopsy and have the slow growing gleason 6 cancer than we face the second big question. Do we do anything? Odds are again that the gleason 6 is going nowhere so don't worry about it but maybe, just maybe there are some gleason 7, 8, 9 cells in there that the biopsy didn't pick up. You can never know that for sure, after all the biopsy is just taking a bunch of shots in the dark. And we all know that those who go on to surgery often find higher gleason scores with the pathological biopsy. So I'd do what I do again but I can see now why a lot of guys will just take their chances and say NO to PSA and yes to continued normal sex and continence.  

Posted 3/6/2010 2:20 AM (GMT 0)
"And it can lead to treatments that can cause impotence and incontinence."This has to be the stupidest sentence in a really stupid article. My PSA reading led to a treatment that caused me incontinence and impotence. And thank goodness it did. Everyone has a series of routine blood tests done during an annual physical and what does it cost to slip in another one, a PSA?

"Prostate cancer is still something to be respected if not feared, and we still need to be vigilant. I hope primary care docs or insurance companies don't use the 'softening' of the guidelines as an excuse to not do screening at all," said Dr. David Roberts, medical director of an Atlanta clinic that caters to businessmen" The &9)$@!)ing insurance companies, of course.

Steve
Posted 3/6/2010 2:53 AM (GMT 0)
I liked your answer Steve, right on target.
Posted 3/6/2010 2:42 PM (GMT 0)
ACS lost focus in this area.   I truly believe that their underlying goal was to reduce the overtreatment of PC, but lost control of their message by going down the path of screening.   The media outlets “fanned the flames” (Mavica’s phrase) with a sensationalist viewpoint as they typically do to incite emotions and catch the reader’s eye.   The fact is—which has gotten lost—that many men are overtreated, and that's a darn shame.   When you actually read their message, you can see that this is what they want to focus on, but…I think they simply need a better communications team to more effectively keep the message “on task”, as the saying goes.   Since the late 1980s, when doctors started adding the blood test for PSA , there has been a sharp increase in the number of PC cases being diagnosed.   Prior to the PSA test, patients were commonly diagnosed in late-stages of PC only when palpable evidence was found during the DRE .   In the PSA -era, most new patients diagnosed have early-stage PC .     Compared to most cancers, prostate cancer tends to grow slowly.   It may be decades from the time the earliest cell changes can be detected under a microscope until the cancer gets big enough to begin to cause symptoms.   By the age 50, one-third of American men have microscopic signs of prostate cancer, and by age 75, half to three-quarters of men's prostates will have cancerous changes. Most of these cancers either remain latent, producing no signs or symptoms, or they are so slow-growing, or indolent, that they never become a serious threat to health .   In the pre- PSA era, these cases of PC, which are now detected and often treated, would have gone unnoticed.   So, in fact, by far most men diagnosed with PC will NOT have a “raging unstoppable storm” of cancer (phrase copied/pasted from one of the earlier posts in this thread).   And in fact, some men here probably should have never pursued an aggressive treatment.   Most cancers need an aggressive treatment, but most prostate cancers don’t…PC is not the same as other cancers.   So, I think that ACS ’s message got lost.   They really should have come out with a strong position to treat the cases of PC that need treating, and don’t treat the cases of PC that don’t need treating.   Overall, I think ACS continues to do wonderful things.   In an earlier posting in this thread, someone recklessly asserted that they spend the vast majority of their revenue on fundraising.   It was actually pretty easy to find out that, in fact, they spend only about 14% on Detection/Treatment ( PSA ; PC overtreatment topical areas), but they also spend 15% on Research (funding over 40 Nobel Prize winners), 18% on Prevention (smoking cessation programs are their most visible; but of course smoking is the most preventable cause of death), and the largest percent (26%) on Patient Support (wigs for chemo patients, and the 28 ACS Hope Lodges near major cancer centers for families during extended stays, are their big programs in this category).   The money ACS has raised has done a lot of good.   So, again, I think they lost focus in their message.   I mean really...for this thread to have been titled:   “An article designed to anger all of us with PC”, ya gotta see that their message got fumbled.   And then throughout this thread, it is causing posters to question (or state) that ACS is telling guys “don’t get tested”…that’s simply not what the ACS said. On top of that, the media outlets have succeeded in catching your eye, whipping readers into a frenzy, and as a result they hope to have you coming back for more.   The best thing ACS can do now is to steer their message toward:  treat those with PC that need treating, and don't treat those that don't need treating.  This doesn't mean don't get the PSA test!
Posted 3/6/2010 3:12 PM (GMT 0)

By the way, brace yourselves for the tsunami of "overtreatment" discussions heading this way later this year when the Dr Mark Scholz book titled "Invasion of the Prostate Snatchers" gets published.

It's fundamental premise is based on a NEJM publication concluding that out of the fifty thousand prostate operations performed annually, more than forty thousand are unjustified.  The book will emphasize that close monitoring—active surveillance rather than surgery or radiation—should be the initial treatment approach for many men, and draw separation between the smaller number of high risk patients and the much higher number of low risk patients that exist in the post-PSA era (same as my comments in the post, above).

ACS missed the boat, and should have jumped more clearly on this bandwagon.  I bet they will yet later this year.

Anyhow, like I said, brace yourselves for the tsumani.

Posted 3/6/2010 4:16 PM (GMT 0)
Casey, I think the point is much simpler than you state.

The ACS or any one else in print, should not now, or ever, discourage PSA testing or the use of DRE's. Men have the right to know if there is cancer of not in their process. There are still over 25,000 dying a year from this blight.

I never have questioned the how the ACS uses their funds, like you said, that info is very available on line, and I have never heard the figures quoted above in an earlier post.

Is there overtreatment? Absolutely! That's why dr. needed to be trained to suggest/encourage AS to the many cases they get each year of low Gleason, low % cancer cores, slow rising PSA, what we consider the likely indolent cases.

But as long as surgeons and oncologists can grab a patient with the word Cancer still ringing in their ears, too many men jump the wagon to "get it out of me".

Once again, education is what is really needed at this point. Yes, I have cancer, but will it grow fast, etc, needes to be adressed in a calm and logical manner. One's primary treatment shouldn't be an emotional only driven decision.

On the other side, there are PC cases, that are diagnosed every day, that are agresseive and much faster moving, denying or delaying to that group of men is careless and selfish at the least.

The ACS position, and some others in national media spotlight, still come across as being anti- testing. That is a big, big mistake. You don't stop a needed test, just because it does what it is suppose to be doing, which is detecting PC in as earliest stage as possible, so that a cure and/or treatment is possible.

David in sC
Posted 3/6/2010 9:27 PM (GMT 0)
Seriously, now that (perhaps) the emotional furor has subsided…   How many here actually read the ACS briefing and still believe it says ANY of the following: ·           Men do not have a right to know if they have prostate cancer. ·           The American Cancer Society is anti-testing . ·           Men should remain ignorant about prostate cancer. ·           ACS guidelines direct doctors to not perform PSA testing. ·           Insurance companies have a right to dictate what we know or do not know about our cancer.   I took ALL of these bullets from earlier posts in this thread .   Seriously!   I don’t know if people didn’t actually read the new ACS guidelines, or they simply like going “flame-on” on internet chat sites just to create a furor…but it doesn’t do anybody any good, and if anything it brings unwarranted harm to an outstanding organization like the ACS .       What DOES the new ACS guideline actually say?   For those of you who might not have actually read it, here’s a summary:   ·           Men should get infomed about PC screening , and then make an informed decision about whether to have screening starting at age: o          40 for men with several first-degree relatives (father, brother, or son) who had PC at an early age, o          45 for high risk men, such as African Americans or men with a single first-degree relative who had PC at an early age, o          50 for men of average risk with a life expectancy of 10-years or more. ·           Men who choose to be tested who have a PSA of less than 2.5 ng/mL may only need to be retested every 2 years . ·           Screening should be done yearly for men whose PSA level is 2.5 ng/mL or higher . ·           Because PC grows slowly, those men without symptoms of PC who do not have a 10-year life expectancy should not be offered testing since they are not likely to benefit.   ·           Overall health status, and not age alone, is important when making decisions about screening.      Is anybody surprised to read that these bullets are what the new ACS guideline says?   Didn’t I read somewhere that ACS said I should remain ignorant about PC, and also that I didn’t have a right to know if I have prostate cancer??   I thought I read that somewhere on the internet!!   I thought I read that the ACS was anti-testing ; but if so why does their new guideline educate readers about the percent Free PSA test, and the even newer version of that test, the Complexed PSA test.   And if they don’t think I should get tested , why does the ACS educate readers about the usefulness of tracking PSA velocity (which uses multiple PSA test results over time), and also about the age-specific PSA ranges.   What about the DRE ; that relic of the pre- PSA era which used to be the primary means of pre-symptom detection?   Here’s what the new ACS guidelines says about it DRE (I'll just copy/paste this one) :   ·           DRE is less effective than the PSA blood test in finding prostate cancer, but it can sometimes find cancers in men with normal PSA levels. For this reason it may be included as a part of prostate cancer screening is done.       So, seriously folks, the American Cancer Society published an updated guideline 3-days ago, on 3/3/2010 , and it is available for free on the internet.   I’ve paraphrased (or copied/pasted) many of the key parts into this posting (above).     Don’t read the goofy media interpretation…I’ve already told you that their intent is to “fan the flames” and make sales.   Go right to the source.   I’d really like to hear back if anyone finds the wording in the ACS guideline like these from the earlier posts in this thread :   ·           do not have a right to know ·           anti-testing ·           remain ignorant ·           direct doctors to not perform PSA ·           Insurance companies have a right to dictate       Go to the new ( 3/3/2010 ) ACS document titled “ Prostate Cancer:   Early Detection ”, subtitled “Why is it important to find Prostate Cancer early” at this URL:   http://www.cancer.org/docroot/CRI/content/CRI_2_6x_Prostate_Cancer_Early_Detection.asp?sitearea=&level =     I really what to hear about how the ACS says I have no right to know if I have PC .  That one really intrigues me.     .  
Posted 3/7/2010 5:22 PM (GMT 0)
"And it can lead to treatments that can cause impotence and incontinence."

Yeah darn cancer treatments. I mean I've heard that a woman who's had breast cancer can't breast feed after double mastectomy.
And gee my wife's uncle had bladder cancer and now he can't pee at all after having his bladder removed and replaced with a bag.

The list of cancer Treatments that don't have (unpleasant) side effects is a pretty short list

Alfred
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