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What If What You ’Survived’ Wasn’t Cancer?

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Posted 8/20/2013 6:16 PM (GMT 0)
http://www.bloomberg.com/news/2013-08-18/what-if-what-you-survived-wasn-t-cancer-.html Coach Jimmy Valvano told us (1993 ESPY Awards speech) that there are three things we all should do every day:  laugh, think, and have our emotions moved to tears (either sadness or joy).  He said, " But think about it. If you laugh, you think, and you cry, that's a full day. That's a heck of a day ." This article will (should) make you think ...and also ponder your own "confirmation bias" from whence you write. An article like this may upset, or even anger some of the people who have invested heavily in their emotional identity as a “cancer survivor.”   Prostate cancer is, as we know, among the most common , and least lethal diseases, which generates a extraordinarily large pool of “survivors.”   This article was, in part, written about many of us, not necessarily  for us . One of the many points to ponder from the article:   “ Putting many patients who don’t have life-threatening diseases through traumatic treatments [is] distracting doctors from the bigger challenge of developing ways to identify and treat the really dangerous fast-growing cancers. ”      --------------------------------------------------------- -Prostate Treatment Survivor
Posted 8/20/2013 6:30 PM (GMT 0)
Thanks, Casey.

There was a similar article on Dr Mercola's site today enititled The Definition of “Cancer” May Be Narrowed to Prevent Overtreatment of Harmless Tumors.



articles.mercola.com/sites/articles/archive/2013/08/20/cancer-redefinition.aspx?e_cid=20130820Z1_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20130820Z1

Lupron Jim

LJ: I edited to make it clickable. ModJim

Post Edited By Moderator (Tudpock18) : 8/20/2013 1:28:22 PM (GMT-6)

Posted 8/20/2013 6:32 PM (GMT 0)
I don't call a cancer that keeps killing 38,000 - 40,000 men a year, a "least lethal disease". A term like that is only sugar coating the reality and danger of prostate cancer in my opinion.

david in sc
Posted 8/20/2013 6:38 PM (GMT 0)
Thanks for posting Casey. I too believe there will be a number of "emotially invested" folks out in the world that will not take this article for what it is trying to say, and that is unfortunate. I for one believe it will simply add to what I hope will soon become a "snowball effect" in terms of better understanding, and better diagnostic tools.
Posted 8/20/2013 7:01 PM (GMT 0)
  David, was that really your main “take-away” from the article?   Your one-and-only comment? The fact is that 28,560 men in the US died from prostate cancer in 2010.   Roughly ten times that many were diagnosed with a form of the disease that same year (most were low-risk).   Roughly one hundred times that number, or approximately 2,617,000 men were alive on Jan. 1, 2010 who had a history of prostate cancer. I stand by the fact that prostate cancer is “one of the most common, least lethal cancers which generates a large pool of survivors.”   Frankly, I believe it is a disservice to men like you , David, with advance disease for all the wide ranging types of what we today call “prostate cancer” to be blended (“averaged”) together under one heading/name.   It “sugar coats” it for your case (makes it not seem so bad), and makes the low-risk cases sound much more serious than they really are.   In a post almost a year ago, I wrote (replying to someone else) a similar comment: On the one hand, the "averaging" pulls-down awareness of the seriousness of the aggressive, potentially deadly versions of PC.  This is illustrated through uninformed comments along the lines of referring to PC as a "lucky" type of cancer.  Although this high risk PC only affects a small percentage of the total number diagnosed with the disease, there is nothing "lucky" about it for the roughly 25K men who will die in the US from PC or their loved ones.   On the other hand, the "averaging" also irrationally elevates men's "cancer" fears when they are diagnosed with a tiny case of low-risk PC which should be treated (in the words of one world-renowned PC expert) similar to how one monitors & treats a case of dandruff.    The reality is that PC is among the most common and least lethal malignancies which yields a large population of survivors, but not all are survivors.  Language is important.  Should both ends of the PC spectrum be given the same disease name?  There are plenty, and a growing number, of the PC experts in the world who say this is a disservice to men like you .      In my view, renaming low-risk PC would give higher priority (see the article quote at the end of my last post) to the important high-risk cases…those cases from which men might actually die from.
Posted 8/20/2013 7:13 PM (GMT 0)
Despite the widespread awareness that many prostate cancers aren’t life-threatening, many physicians are determined to find and treat it any time a PSA score comes in a little high. “I saw a gentleman this week who had had 12 biopsies, no cancer, and they said there must be cancer in there and they did 24,” says Ian Thompson of the University of Texas Health Science Center at San Antonio, who is one of the JAMA authors.

This paragraph doesn't make sense to me and, therefore, undercuts the efficacy of the entire article.

First, there's the hyperbole in the phrase "determined to find and treat it any time a PSA score comes in a little high."  Wouldn't it be more correct to say they're determined to find out the cause of the elevated PSA, which may or may not involve cancer?

It goes on to mention a gentleman who had had 12 biopsies, which had found no cancer.....so they did 24?  Don't you think what they really did was perhaps a 24-core biopsy?  Otherwise, how do you jump from 12 to 24?

Maybe my opinion is skewed today by the fact that I just learned last night that a high school friend whom I had just spoken with at our 50th reunion a couple of weeks ago has now been diagnosed with adenocarcinoma which has spread to the bones, lung, and brain.  He hadn't missed a day of work in 35 years and never saw doctors.  Well, at least he wasn't over-screened or overtreated.  Sorry to sound cynical, but with this going on, it's not a good day for me to talk about IDLE cancers, though I'm sure they exist. 

Here's a link to the article about my friend Fred:  http://www.bnd.com/2013/08/19/2752084/longtime-mater-dei-volleyball.html

Post Edited (clocknut) : 8/20/2013 1:19:10 PM (GMT-6)

Posted 8/20/2013 7:18 PM (GMT 0)
Actually, Casey, read the entire piece. What I got out of in the bigger picture, was another rationale fro re-naming certain elements of PC to a non-cancerous term. And I do agree with you about the "disservice" part of what you are saying. I really do, and would have to say I agree on that sole point.

For "x" amount of men diagnosed with PC, they do not need treatment, beyond AS. I have agreed with this from the start of the "AS" movement. Then you have "y" amount of men with PC that absolutely need treatment, and are thus treated. Fortunately for the majority of them, they will be "cured" in the correct use of that word, or at least cured enough to outlive any harm from their PC. Then you have group "Z", these are men whom advanced disease will never be curable, and out of that group, that's where the death number comes into play, and another segment of the advanced group may live long enough via advance treatments (both available now and what's in the pike) to out live their cancer.

So, I agree, not all PC is equal. But, I still just as strongly opposed any attempt at renaming a cancer. To me, its like a parlor trick, no one is being fooled. A cancer cell is a cancer cell is a cancer cell.

The best way in my opinion to curb overtreatment (which I freely acknowledge), is through education after diagnosis. There needs to be a distinct line and standard of care in place to take care of this problem. If you are in my group "x" above, then you either need no treatment, or you need to go down the AS path (these men shouldn't even have the option of invasive treatments, regardless of whom is paying for it). The men in group "y" that need treatment, should be treated in measure of what their disease indicates - and their treatments should be offered from the less invasive to the most invasive depending on their particular circumstances (otherword, on a patient by patient basis), and of course, those men in group "z", need an aggressive protocol and standard of care to try to save and/or extend their lives.

What I don't like in our existing systems, is where people think that medical treatments should be a la carte or buffet style. I will take some of this, no I don't want any of that....etc.

Treatment choices should be dictated by the needs of the patients, not some wish list.

Other than the re-naming scheme, which I will never buy into, there is more agreement between us than you might realize.

David in SC
Posted 8/20/2013 7:32 PM (GMT 0)
Again the issue is over diagnosing an illness that would otherwise never be a threat or ever cause any issues and then when diagnosed treating a cancer that was not life threatening and could have been left untreated.

But as we continue to see, the fact that we are good at identifying prostate cancer that needs treatment, we are not so good at diagnosing prostate cancer that is not or will ever be a threat. So the norm today is to "err on the side" of morbid and invasive radical therapies. Even though the error rate is extremely high ~ higher than just about all other cancers.

I have proven to myself here recently that I could never argue a point that is intended to eliminate ODOT without dissension, thus dissension towards me about the ODOT issues will be the case if I say anything to help men that are in fact dealing terribly with a diagnosis of indolent non-life threatening disease. Those men are not important enough to the PCa community or their plight is trumped by the hope of saving lives regardless of their issues. A Catch 22 if you will.

So I guess I should just stay silent and observe. Watching as we add tens of thousands of these men, increasing this issue with every patient or advocate stating to screen, screen, screen with the "new" non-scientific guideline that would test every man at 40 and treat them right away in hopes it will save lives.

I mean diagnosing and treating 30 men to save one life is very acceptable to many in PCa. Even though many lives will be adversely affected along the way.

I don't mean to downplay saving lives. I understand the need. But I do hope to help end the persistent downplaying of the adverse physiological and psychological morbidities that go along with that attempt to do so in men that don't need this to happen to them.

Ugh!


PS: David Purg, the actually number of men that die per year from PCa is 28,000, maybe a little higher. Unacceptable? yes I think so. But most of these men were diagnosed under older guidelines over a decade ago. We won't see any affects on earlier screening (Screen at 40) for a decade or two.

Tony
Posted 8/20/2013 7:36 PM (GMT 0)
I didn't laugh and and I didn't cry but this article makes me continue to think about this important subject. My preferred alternative would be some specificity by the AUA recommending non-radical treatment of these low risk cancers. However, I must admit to some sympathy to the re-naming in the absence of what I would prefer...

Casey, thanks for sharing and welcome back. I hope this doesn't mean the honeymoon is over.

Jim

P. S. to Tony: I don't think silence and observation are in your DNA. Comment away... yeah
Posted 8/20/2013 7:43 PM (GMT 0)
David, I agree with your last sentence about being in at least partial agreement.   If you don’t mind carrying forward this civil conversation, I think there may be more agreement between us than what you might now realize. Like Jimmy V wanted us to do, I’m challenging you to think; and then to use your constructive words to make me think.   What I wrote was:   “I believe it is a disservice to men like you , David, with advance disease for all the wide ranging types of what we today call “prostate cancer” to be blended (“averaged”) together under one heading/name.”   I made it clear in this comment the important aspect of why there is disservice. Can you articulate more about what you meant when you wrote, “ And I do agree with you about the "disservice" part of what you are saying.”   In your own words, think, then articulate, why is there a “disservice” to high-risk men who were “lucky” to (just) get PC?       Tony, you’ve gone off the deep-end…!   A couple years ago I wrote a similar tounge-in-cheek posting about how all men should be signed-up to have RP at age 50 to wipe-out prostate cancer.  Turn in your prostate and receive your AARP card.  The problem with this logic is, according to Dr Willet Whitmore (the "father of urologic oncology"), that the PC mortality rate would not significantly change; Whitmore said:  " Is cure possible? Is cure necessary? Is cure possible only when it is not necessary ?"  Whitmore's message is also deep within the context of this article...     Tudpock, the honeymoon’s not over...I’m just coming up for air!     clocknut, I'm sorry to hear about your friend.  I'm sure you are not making excuses for someone who you said never went to doctors. Post Edited (Casey59) : 8/20/2013 3:18:47 PM (GMT-6)
Posted 8/20/2013 7:50 PM (GMT 0)
Casey, Well, I'm not sure Fred never went to doctors, just that his family says he didn't miss a day of work in 45 years.

Also, coincidentally,  today is exactly the third anniversary of the surgery that either did, or didn't, save my life. 

Reviewing my individual pathology, I think that in my case it probably did, but the PSA test coming up next week still makes me a little nervous.

Posted 8/20/2013 8:16 PM (GMT 0)
mine was cancer.  ask yourself and the other secondguessers that question.

ed

 

Posted 8/20/2013 8:18 PM (GMT 0)

Reviewing my individual pathology, I think that in my case it probably did, but the PSA test coming up next week still makes me a little nervous.

me too.  I still haven't made the appt.  for the first week of September.

ed

Posted 8/20/2013 9:20 PM (GMT 0)
At the very least, it appears I survived the surgery to remove something the pathologist calls adenocarcinoma.

Purgatory said...
Fortunately for the majority of them, they will be "cured" in the correct use of that word, or at least cured enough to outlive any harm from their PC.


Agreed. It might never have killed me, but if I live as long as my grandfather did (94), it probably had the capacity to make me one miserable SOB before I die.

I just won't call myself a cancer survivor if it helps Ms. Postrel sleep better at night. <shrug>
Posted 8/20/2013 9:43 PM (GMT 0)
Guys - there are two sides to this deal, those of us that have cancer and need to be treated, and those that have a lower risk and should be afforded the opportunity to make decisions other than something pretty darn invasive and possibly not necessary. They should not be lumped into the same conversation together - two different situations/conditions IMHO - it doesn't have to be all or nothing. . . .
Posted 8/20/2013 9:49 PM (GMT 0)
You don't have to rename it, and you don't have to stop screening/testing. Just change the treatment protocols. Hopefully, more refined tests will render these arguments moot soon.
Posted 8/20/2013 10:23 PM (GMT 0)
This article covers the issues well.

You can't just change doctors minds and tell them to restrain themselves with promoting therapies they have a vested interest in on. You can't change "over-protective" or not wanting to err on the part of the doctors. So just changing treatment protocol will not alone solve anything.

Esserman's comment “the cancers that grow and spread very quickly are not the ones that you can catch in time with screening.” I imagine is probably very close to being the point I make.

In addition, with screening you have to screen the high risk category to get the best effect of screening. Else you run the risk of making this problem far worse. Doctors won't err. There's legal reasons and there's genuine physician concern that if they don't treat, they bear that burden as well.

So changing the treatments to include AS as a protocol will help but then the evidence is still clear ~ 90% of all men diagnosed will be treated this year. 90%.

Casey, I never liked shallow waters anyway...I'll keep the flag raised calling for better tools. I'll also be a proponent of screening, but in screening the appropriate men.

Tony
Posted 8/20/2013 10:28 PM (GMT 0)

TC-LasVegas said...
Again the issue is over diagnosing an illness that would otherwise never be a threat or ever cause any issues and then when diagnosed treating a cancer that was not life threatening and could have been left untreated.

But as we continue to see, the fact that we are good at identifying prostate cancer that needs treatment, we are not so good at diagnosing prostate cancer that is not or will ever be a threat. So the norm today is to "err on the side" of morbid and invasive radical therapies. Even though the error rate is extremely high ~ higher than just about all other cancers.

Tony

I don't disagree that ODOT is a problem, but, as Tony points out, if you cannot GUARANTEE my PCa won't cause me significant harm in my expected lifetime, you'll get a fight from me about treatment. Life threatening and life altering aren't the same thing, IMO. Perhaps I'll outlive metastatic PCa, perhaps I won't. Write me a guarantee to that effect, and I might have reconsidered. Tell your brothers with positive bx results the same thing.

There is no cookie-cutter approach to this. I don't think anybody here suggests that.

However, there is significant danger when we try to go the other way. Read the Medscape article about a study from the Swedes about inappropriate over-scanning.

www.medscape.com

medscape said...
. . . .
The results were interesting. They showed that over time there was a reduction from 43% to 3% in the number of men with low-risk disease (a Gleason score of 6 or lower, prostate-specific antigen level < 10 ng/mL, and clinical T1 disease) who received an inappropriate scan. This implementation had a positive effect in lowering the misuse of tests. Unfortunately, there was also about a 15% drop in the proper use of scanning for men with high-risk disease, and it is unclear why that occurred.
. . .



Let's just toss those 15% out in the cold and say, "sorry."

Hyperbolic? Perhaps. Give some clinicians an out and they'll take it, especially when cost savings pressures are involved. There has to be a happy medium here somewhere.
Posted 8/20/2013 10:51 PM (GMT 0)
halftrack great ending.

There will never be a happy median when a life is at stake on one hand. And on the other, men feeling their lives were ruined or heavily altered by aggressive approaches have an unimportant voice with many. And few of us didn't have our lives altered by this disease.

But so it is. I believe that happy median is screening where the risks are highest and scientifically definable. Population based screening protocol, such as asking for every man to be screened early, 27 years earlier than the median ages at Dx at 67 will only lead to further complicating the screening issues. The hope is that ALL prostate cancer starts early so the earlier the screening the better. But Esserman's comment in my next post above shows that is not always the case. Young men WILL develop aggressive prostate cancers and screening will probably do little to alter that course. So a screening at age 40 protocol can really only be successful if the disease will be a threat later in life. That's something we cannot determine with the tools we have today. But if any of these men are diagnosed they'll likely be treated fast. 90% of them to be accurate. That's sad.

Tony
Posted 8/20/2013 11:00 PM (GMT 0)
Tony, like you, I would love to have a definitive screening tool that could tell us with inerrant certainty what needs to be treated.

I guess I'm willing to err on the side that saves a few more of us. We can all tell tales of sitting with someone dying of this cancer. A number of us here could also talk about how we fell outside some of the suggested guidelines. This cursed disease refuses to fit in a mold.

Just because it's a (mostly old) man's disease and it's not one of the "baddest ones" doesn't mean it won't kill.

(sorry, don't mean to get too sarcastic, but that's not directed at you.)

Doug
Posted 8/20/2013 11:23 PM (GMT 0)
Oh you are right, halftrack. but there is no need for sarcasm.  PC does kill.  It kills a portion of the men with high-risk disease.  It does not kill men with low-risk disease.  And the numbers need to treat to save one life are well-known.  Off the top of my head, it's higher than 30:1 using the current overtreatment approaches.  Of course, if we make better decisions on who to treat or not treat, that ratio gets a lot better.

 

 

We should all remember that there will never be a "tool" which will definatively provide a "1" or a "0" with regard to whether one's cancer is indolent or not.  Medicine (and medical "tools") are all about risk management, not 100% proof.  You can "wish" all you want...but I wouldn't hold your breath.  We have excellent tools and methodologies today (called "active surveillance") for monitoring whether low-risk men should advance to treatment or not.

Post Edited (Casey59) : 8/20/2013 5:29:15 PM (GMT-6)

Posted 8/21/2013 12:02 AM (GMT 0)
Doug, I understand.
You have a popular position and I respect it.

My concern is when we start screening without evidence that what we're doing is saving men then you have an issue. We do know that most treatment modalities have a mortality rate associated with them even if it is rare and the physical harms ca be debilitating as well. Disease mortality in men in their forties is rare, so rare that screening in the thirties makes little sense. Can we save lives and therefore should we just buck the trend and screen thirty something anyway? We probably CAN save a few lives. And we can start screening the 20's to save even rarer 30 somethings.

And men have died of PCa in their twenties? Where is the happy median? Looking at a chart that shows mortality rates it would seem that screening at 40 would have little impact but it could be reasonable for men in their 40's with high risk factors to benefit well enough from screening to warrant it. Looking at the chart also reveals that it is reasonable to screen men between 50-55 and up.

Mortality Rates by age.
tinyurl.com/m6rurj5

I remember one of the most common things doctors tell a patient is "your are more likely to die with prostate cancer than because of it".

There's no good death to prostate cancer in my book. And there's no good quality of life years lost either. Where's the median that err's on the side of permanent and many times nasty harms versus disease mortality? Some have told me that they don't care how many men are harmed, they only care about how many die from prostate cancer.

Tony
Posted 8/21/2013 12:34 AM (GMT 0)
My last few years of teaching our district decided to "rename" what learning disabled was to qualify for Special Ed.  It was all about money and not wanting to provide services because of budget issues.  Were the kids any less needy--no.  Until there is a better way to determine what cancers are and which aren't lethal I prefer being told I have cancer over a false sense of security that I don't.  For me, at least, surgery was a well researched and thought out process.  I wish I wouldn't have had to make a choice, but it was what it was.  There are no easy answers when it comes to one's health.
Posted 8/21/2013 12:34 AM (GMT 0)
Back to the article.  Maybe someone can comment on this statement:   “ Putting many patients who don’t have life-threatening diseases through traumatic treatments [is] distracting doctors from the bigger challenge of developing ways to identify and treat the really dangerous fast-growing cancers. ”   Really?    I don't understand how the fact that my surgeon in Lake County, Illinois, and someone else's in Kentucky, and someone else's in Idaho, and thousands of other surgeons practicing their craft in the best way know how distracts from that bigger challenge.  That higher level work is being done, I presume, by research scientists and top-level physicians at universities and premier medical facilities....not by the urologists working in the trenches.  So in what way is it "distracting" from the bigger challenge?  That sounds like baloney to me.   Just to be clear, I'm not trying to be argumentative. I'm sure that there are cancers that would never have killed their host.  I'm just at a loss to find logic in the above statement. Post Edited (clocknut) : 8/20/2013 6:39:50 PM (GMT-6)
Posted 8/21/2013 12:48 AM (GMT 0)
I tend to agree with that, Bill (Clock),
I'm with you on that because it's not the typical clinical urologist that's going to solve the research issues. They're just going to treat and keep treating.

That's why they do what they do and researchers do what they do. I did not agree with that point in the article.

Tony
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