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My email exchange with Dr. Otis Brawley (ACS chief medical officer) re PSA screening issue

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Posted 5/24/2012 4:14 PM (GMT 0)
I'm not talking about one life, Casey. I'm looking for a "misery calculation," as I thought I made clear in my post. Misery of overtreatment vs misery of dealing with advanced PC that could have been prevented by early detection. My whole point has been that the "one life" calculation, which I'm not convinced of, by the way, misses a larger point about the overall benefits of a PSA. If my cancer hadn't been discovered and treated early, do you think I'd be consoled by the argument that I had made it to an average life expectancy after five or ten years of pain and suffering in the battle to fight my advanced disease? I don't think so. That's what I'm talking about.
Posted 5/24/2012 4:21 PM (GMT 0)
 

Phenom said...
My whole point has been that the "one life" calculation, which I'm not convinced of, by the way...

Next time, if you begin your post with "I am asking for data, but you should know that I'm not convinced by data" it will save me from wasting time & energy responding...

"Misery calculation?"  If you won't bother listening to hard data, good luck with this one.  I think that all you really need to do is to scan the postings here at HW...

Posted 5/24/2012 4:55 PM (GMT 0)
Phenom,
The numbers are out there. The chance of you having PC pretty closely links to your age. A 60 year old has about a 60% chance of having PC. This is pretty well confirmed by autopsies of men dying from all causes. The other number that is very reliable is that a total of 3% of men die from PC. The chances of one having PC is high and dying from it is low. There are many studies that show at 20 years the difference between being treated and not being treated results in a 5% survival benefit. ( Swedish study, Klotz, and Pivot study).
As others have mentioned there is little difference in death rates in countries that have screening and those that don't.
These tell me a couple of things:
There are a huge number of men with PC that go through their lives and die never knowing they had it.
There are a great number of men that get treated and still die from this disease.
There are are great number of men that believe that treatment saved their lives, but in reality made little difference, but there is no way to get them to believe otherwise, because of their investment in this belief.
In regards to screening I've moved from a pro mass screeing to a screening agnostic. I just don't know if it makes a significant difference in outcomes. Some would argue that a 5-10% difference in deaths is significant, and if treatments resulted in a higher cure rate and no side effects it would be, but at this time they just don't. For younger men screening is definately a benefit, and those having risk factors should definately get screened, and if we could distinguish aggressive tumors from non aggressive then the value of mass screeing would skyrocket. But in our current system screening most always leads to treatment and treatment doesn't necessarily mean survival.
Posted 5/24/2012 5:13 PM (GMT 0)

Casey59 said...


Next time, if you begin your post with "I am asking for data, but you should know that I'm not convinced by data" it will save me from wasting time & energy responding...

"Misery calculation?" If you won't bother listening to hard data, good luck with this one. I think that all you really need to do is to scan the postings here at HW...

Please do save your precious time and energy, by all means. And scanning the postings here is exactly what I'm talking about.
Posted 5/24/2012 5:14 PM (GMT 0)
John T: do you regret being treated? If I follow your logic, you should.
Posted 5/24/2012 5:17 PM (GMT 0)
If screening reduces the amount of men that have to deal with advance prostate cancer  isn't that beneficial?
Posted 5/24/2012 5:25 PM (GMT 0)

John T said...
Phenom,
The numbers are out there. The chance of you having PC pretty closely links to your age. A 60 year old has about a 60% chance of having PC. This is pretty well confirmed by autopsies of men dying from all causes. The other number that is very reliable is that a total of 3% of men die from PC. The chances of one having PC is high and dying from it is low. There are many studies that show at 20 years the difference between being treated and not being treated results in a 5% survival benefit. ( Swedish study, Klotz, and Pivot study).
As others have mentioned there is little difference in death rates in countries that have screening and those that don't.
These tell me a couple of things:
There are a huge number of men with PC that go through their lives and die never knowing they had it.
There are a great number of men that get treated and still die from this disease.
There are are great number of men that believe that treatment saved their lives, but in reality made little difference, but there is no way to get them to believe otherwise, because of their investment in this belief.
In regards to screening I've moved from a pro mass screeing to a screening agnostic. I just don't know if it makes a significant difference in outcomes. Some would argue that a 5-10% difference in deaths is significant, and if treatments resulted in a higher cure rate and no side effects it would be, but at this time they just don't. For younger men screening is definately a benefit, and those having risk factors should definately get screened, and if we could distinguish aggressive tumors from non aggressive then the value of mass screeing would skyrocket. But in our current system screening most always leads to treatment and treatment doesn't necessarily mean survival.

You talk about "survival benefits" and "outcomes." The point I've been trying to make is that surviving to an average life expectancy with and without having endured a protracted battle with advanced PC are two very different "outcomes," but I'm not sure this distinction is being taken into account by the stats. In my personal situation, I believe from what I've read, and from what I've seen on this forum that by early detection and treatment I have most likely been spared that battle, well worth the price I've paid. But where am I represented in the numbers used for the recommendation against screening? I'm guessing I'm in the "no benefit" category along with the other 999 out of a thousand. That's what doesn't make a lot of sense to me.
Posted 5/24/2012 5:42 PM (GMT 0)
One point I haven't seen discussed is how much faith we can put in "cause of death" statistics. If those men who have never been diagnosed or treated for prostate cancer die after years of enduring bone pain, and perhaps metastasis to the lungs, do you suppose their deaths are counted as deaths from prostate cancer? Or, as my funeral director has told me on more than one occasion, are they just as likely to be counted as deaths from "cardiac arrest," lung cancer, heart disease, or some other cause.

On the otheer hand, if a man has been treated for prostate cancer; if he bears the scars on his belly that show he had a prostatectomy; if he's been seeing a uro or an oncologist for treatment of his prostate cancer.....that man's death will surely be recorded as death from prostate cancer.

If my thinking on this is correct, then it's very possible that the stats comparing relative morbidity between those who have been treated and those untreated could be quite deceiving.
Posted 5/24/2012 6:14 PM (GMT 0)
John T said:
"As others have mentioned there is little difference in death rates in countries that have screening and those that don't."

JohnT, this is incorrect. See:
Prostate cancer deaths by country
Who database: http://tinyurl.com/7m4szmh

When you do, you will see that there is a direct relationship between PSA use and PCa mortality. In countries in which PSA is in low use, PCa mortality continues to be high or has been reduced slightly. The opposite is true in countries that use PSA to detect PCa at earlier stages and treat them effectively.

RalphV
Posted 5/24/2012 6:38 PM (GMT 0)
Prostate cancer mortality has a geographic pattern, using linear regression and trend surface analysis, which is not readily explicable by other risk factors. Increased ultraviolet radiation (sunlight) is inversely proportional to rates of PC mortality, likely indicating that vitamin D has an important role in the natural history of PC. The lattitude of London is equivalent to somewhere up in Canada's Hudson Bay.
Posted 5/24/2012 6:58 PM (GMT 0)
I also wonder if prostate cancer deaths would have increased dramatically over the last 15-20 due to the obeasity epidemic in the US due to the high fat diet of most men. Does that effect the true impact of PSA testing? We will probably never know. Many variables here.
Posted 5/24/2012 7:20 PM (GMT 0)
The cure rate for low risk PC is around 95%, for intermediate risk 70%, and for high risk about 60%. These are not survival rates which are far higher. The type of cancer you have has a much greater significance in both cure and death rates than the treatment you receive. We achieve a high cure rate on cancers that will never hurt us and a low cure rate for cancers that will. Something is wrong with this picture.
Posted 5/24/2012 7:32 PM (GMT 0)
clocknut, your point (on reporting) is understood, but perhaps really starting to speculatively “reach” for straws…unless you are also thinking there is a vast government conspiracy here…I hope you aren't. It is implausible that the observed trends can be attributed to a general change in the accuracy or procedures for recording the cause of death.   First, the change in direction in mortality does not date back to some prior era when determination of cause of death for a man having prostate cancer might have been ambiguous or death certification standards were not highly developed. Prostate cancer mortality was rising immediately preceding the recent decline, and modern standards for recording cause of death are likely to have been applied equally to both intervals. Secondly, and possibly most compelling, is that no specific revision of coding procedures pertaining to prostate cancer as a cause of death was introduced at the time the death rate began to change. As BB_Fan points out, there are many actual variables, but most experts (not speculators) believe that the vast majority (not all) of the shift of PC mortality has been based on the novel improvements to treatment modes during the period, especially in the areas of advanced PC (the only cases where men actually die of PC); many HT/chemo developments have led to measureable life-extending results…thankfully.   DES was just about the only HT prescribed up until just before the shift in slope, and while DES brought some good results, there’s been an explosion of more advanced medicines since then. It is understandably difficult for people to change perspectives if they have been taught for decades to fear all cancer and that the best way to deal with cancer is to find it early and treat it aggressively.   The cancer “get it out now” hysteria is deeply ingrained…but for our son’s and grandson’s sakes we need to reverse the overtreatment trend and get smarter about handling low-risk cases.
Posted 5/24/2012 7:34 PM (GMT 0)
Frack,
I don't regret being treated because I don't have any side effects. If I were incontinent or impotant I may very well have regretted my treatment. I had a pretty large tumor and a G4+3, but I lived with it for over 12 years without any negative results. I have no doubt that I could have gone another 12 years symptom free, beyond that there are a lot of unknowns. Good probability of dying in 20 years, but I would be 85 and most like dead anyway.
Getting treated probably bought me a couple of years if I look at it objectively, obviously with no side effects I drew the right cards, I don't know how I would react if I had to wear diapers or had severe bowel issues or pain like Purg had. Would an extra couple of years living be worth it, probably not.
Posted 5/24/2012 8:13 PM (GMT 0)

John T said...
Frack,
I don't regret being treated because I don't have any side effects. If I were incontinent or impotant I may very well have regretted my treatment. I had a pretty large tumor and a G4+3, but I lived with it for over 12 years without any negative results. I have no doubt that I could have gone another 12 years symptom free, beyond that there are a lot of unknowns. Good probability of dying in 20 years, but I would be 85 and most like dead anyway.
Getting treated probably bought me a couple of years if I look at it objectively, obviously with no side effects I drew the right cards, I don't know how I would react if I had to wear diapers or had severe bowel issues or pain like Purg had. Would an extra couple of years living be worth it, probably not.

Very interesting post,John.
Both urologists I've seen have said at 60 and in good general health,they recommend robotic if cancer is found over seed treatment.Both don't do the robotic but do know very experienced surgeons who do.
You had a large tumor G7 and have no side effects 3 years of psa's all at 0.1 which is great.
BTW,I requested the transperiel biopsy I'm getting mid to late June because you mentioned that to me with my situation that I've posted here.
Thank you and all the others here.


Joe

Post Edited (Joe702) : 5/24/2012 2:17:03 PM (GMT-6)

Posted 5/24/2012 8:17 PM (GMT 0)
I am wondering how many men out there who are dealing with advance PC wish they would have had a PSA test a little bid earlier or a little bit more often and what there opinion on PSA screening is?

 

Posted 5/24/2012 8:32 PM (GMT 0)
I had a pretty large tumor and a G4+3, but I lived with it for over 12 years without any negative results. I have no doubt that I could have gone another 12 years symptom free, beyond that there are a lot of unknowns.

really?  with a PSA of 40 you think you could have gone another dozen years without symptoms?  man that statement just floors me.

ed

 

Posted 5/24/2012 9:03 PM (GMT 0)

John T said...
Frack,
I don't regret being treated because I don't have any side effects. If I were incontinent or impotant I may very well have regretted my treatment. I had a pretty large tumor and a G4+3, but I lived with it for over 12 years without any negative results. I have no doubt that I could have gone another 12 years symptom free, beyond that there are a lot of unknowns. Good probability of dying in 20 years, but I would be 85 and most like dead anyway.
Getting treated probably bought me a couple of years if I look at it objectively, obviously with no side effects I drew the right cards, I don't know how I would react if I had to wear diapers or had severe bowel issues or pain like Purg had. Would an extra couple of years living be worth it, probably not.

I don't regret getting treated either. I'm exactly where I was pre surgery with the exception of dry orgasms and stronger stream when I pee.

I see the statistics by the better robotic surgeons in the country and they all seem to be around 80% for Ed and 90s for continence. Sure, perhaps they cherry pick their patients. I'm aware of that possibility.

Wouldn't you say that if these numbers become widespread over the next years, as technology and surgical skills improve, that the concern for over treatment vis-a-vis SEs will die down?

Also, regardless of the above, don't you think that many a man, me included, goes into the decision to have any treatment well aware of the possible SEs and still feels his choice in treatment is well worth it because his number one goal is to attempt to find a cure.

Regarding your other post, it's tricky. I wasn't asked by my general doc if I agreed to having a PSA test. If I was asked I would have agreed in a heartbeat anyway. But the fact that he did run this simple blood test allowed him to find a G7 tumor in a 40 year old man. I saw your other post above rationalizing five years here and there vis-a-vis SEs but I'm the age of your sons. And there are a lot of us my age. What would happen to us without the screening? Don't you agree that this is dangerous for people in my category?

finally, not to get too personal, but if you had a 40 year old son (maybe you do), would you suggest the have a PSA test knowing what you know about the disease irrespective of you having it?

David
Posted 5/24/2012 11:17 PM (GMT 0)
But the fact that he did run this simple blood test allowed him to find a G7 tumor in a 40 year old man. I saw your other post above rationalizing five years here and there vis-a-vis SEs but I'm the age of your sons. And there are a lot of us my age. What would happen to us without the screening? Don't you agree that this is dangerous for people in my category?

Davidg, I agree.  Our category isn't mentioned much....40something's with gleason 7 tumors.  There are more men out there like you and my husband.  They will hear the new recommendation and not get their PSA, thus miss the opportunity to treat their G7 tumor.   

Posted 5/24/2012 11:51 PM (GMT 0)
Ed,
Yes I do. My psa doubling time was 3 years consistantly, 7 points of it from an enlarged prostate. Diet reduced psa by 10 points in three months, so I had a type of PC that was responsive to diet. Also PCA3 was 40 which is also an indicator of non aggessiveness. Scans showed the tumor completely contained in the TZ which gave plenty of room for growth before penetrating the capsul. TZ tumors also give off a lot more psa than PZ tumors so the rate of psa growth was much more important than the psa number. With Adovart and diet I'm sure my PSADT would have increase to 4 or higher which would surley have bought me 12 years. I also asked my oncologist what would happen if I did nothing, he said no symptoms in 10-12 years and an additional 11 years or more if I went on HT then. It helps to understand the biology of your individual cancer before making decisions and I went the extra mile to understand mine. Casodex also dropped it to .02 which is another indicator of non-agressive cancer. If I have a reoccurrance in the future it is doubtful that I would have salvage treatment unless I was sure it was local and that I had a very high probability of no SEs.

Davidg.
I have a a 39 year old son and a 37 year old. The oldest already had a psa test and my youngest will at 40. Since I had PC and my wife had BC they are both in an at risk catagory. I never said I was against screening. I believe that all at risk males should have psa tests and anyone who wants a psa test should get one when they are in their 40's. Having yearly psa tests when the first psa test is low is overkill. Having a psa test at 75 is riduculous. I said I was an agnostic on mass screening not that I was against informed screening. If my sons were Dxed with low risk pc I would absolutely recommend AS until it was determined exactly what the cancer was doing. I would base my recommendation of treatment based on the biology of the cancer, fitting the treatment to the biology and staging. Of course I know a lot more now than I did 4 years ago when I would have recommended immediate surgery.
Posted 5/25/2012 8:44 PM (GMT 0)
John, you said: "PCA3 was 40 which is also an indicator of non aggessiveness."

First, can this test tell us anything accurately after RRP?
Second, could those results, if yes to question one, still indicate the aggressiveness of my little floating less than .2 but above .1 results now?
Posted 5/25/2012 10:49 PM (GMT 0)
James,
I don't know if PCA3 can be use after treatment. It's a very good question.
I know that very few patients get a PAP test, which is a marker like psa and was used before the psa test. In the few studies I have seen, by Dattoli and Strum , PAP was the best indicator of treatment failure in both surgery and radiation patients. I think PAP can be used after treatemtent, but not really sure.
I think PCA3 is valuable, not just by itself, but when combined with the totality of everything else, like PASDT, Gleason and psa velocity. I'm also a big believer in scans to gain more information before choosing a treatment.
JT
Posted 5/27/2012 7:03 AM (GMT 0)
I'm interested in the idea that my 38.6 pca3 is not high risk.
Last psa 3.9 and has been jumping around between 2.7 after cipro to a high of 4.2 in 3/11 before cipro for the last 14 months about time I changed docs.psa in 6/10 was 2.4 and 2.4 in 10/09 having jumped from 1.7 in 10/07.
Free psa has been between 24 and 29
Planing on having biopsy in a couple of weeks.
Very scared since I have had various symtoms for a while at least a couple of years and getting worse. Pee all the time weird back and hip pain slow flow and slow start
Any words of wisdom while I sweat to the next few weeks
Have a bad feeling of a bad outcome since I have all the Symtoms which seem to indacate less that happy ending
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