Met a fellow PCa brother last night, glimpse of the future without PSA screening

sue saddened wife said...
................On that day he became a fatality because Instead of doing the job that should have been the one that was asked of her no Dre exam was given he was told she doesn't reccomend PSA testing because of the false readings and causes more harm than good. There was no outward sign that said as he stood there his body was being invaded by PC .Unless you do the screening how would you ever know you are a marked man how would you ever find a very sneeky cancer at a time when it can be treatable and curable

I find the comments made by certain men who say mass screening is wrong and for the few number of lives saved its not worth it .??? What if it was your life ? Would you then feel that you would give up your life because you would want to spare some men over treatment..............

Yes, and once again, the test is not the problem. The problem is possible or probable over reaction to the results of the test. If anyone is actually making the argument that we are not better off(even if not always "cured") knowing of an aggressive cancer as early as possible rather than once symptoms have appeared, I am not buying it.

The problem is the normal persons response to the word cancer, even if it is a very low risk form. The additional problem is many a doctor's counseling(even to very low risk folks) which goes: "you have PC cancer, but we can cure it with surgery", without discussing what the risk level and prognosis is. They advise surgery even if there is a good chance it does not need curing, especially considering the possible SEs of doing other than just watching it. The word cancer does the damage, without an explanation that with PC, there are a lot of very different likely outcomes with or without treatment.

So let's not shoot the messenger for those 2 problems thus preventing some men with aggressive PC from being diagnosed with such, and quite possibly being helped. Life often extended and maybe even sometimes cured when found early enough. Let's continue trying to inform the public of the above 2 problems. Educate them that there are different forms of this cancer with sometimes dramatically different risk or prognosis.

Anyone who comes to this forum gets a good education on that subject. Hopefully that education can be increasingly spread to the general public. But even if that happens, there will continue to be men who choose- and doctors who continue to encourage- treatments that some of us feel are way more aggressive than needed. And some of those men will suffer SEs because of that debatable choice. But just because that is the case, that is no justification to deny early knowledge of a G9 that is still well contained to men in that category. And by denying I mean also just not recommending the test to them. Most men will never consider it if some health pro does not at least make them aware of it.

The only possible rationale against testing, IMO, is if it is argued that if you have the kind of PC that is going to kill you, regardless of Gleason, there is nothing that can be done to cure or even significantly slow down the advance(adding more years of life) even if you catch it early. If that is the argument, I am not at all convinced at this point. I think there is more than one person at this forum for whom treatment has dramatically extended their lives, even though some were NOT caught early. It just makes sense to me that if treatment helped(sometimes to an impressive degree) even those found late in the game, that it could help even more if found several years earlier, the earlier the better. Am I wrong, is that NOT the case? If I am not wrong, then if many men are at risk for overly aggressive treatments so that the few may be saved, then so be it. In the mean time, work hard to solve the problem of over aggressive treatment, rather than denying early diagnosis to those who need it.

Post Edited (BillyBob@388) : 3/19/2016 9:55:29 AM (GMT-6)

The question becomes, and it does have a very human face on it: How do you find the few that desperately NEED to be found early enough that effective treatment is possible without screening large numbers? Yes, it's all about education, and better tools to securely identify the ones that don't need treatment. And yes, even with better tools and education, it's provable that some percentage of low risk men will seek treatment anyway...and is that any different from a woman who carries the so called breast cancer gene choosing to undergo radical mastectomy because of it?

The medical community (by law) is all about providing "informed consent". And I'm an example of someone for whom that is a meaningless form signed at a moment of severe stress. Which isn't informed at all. I was in the ER with appendicitis, and I was presented with the informed consent form prior to emergency surgery AFTER I had had my glasses taken away and After a shot of morphine. What was informed about that? Why did they even present it to ME, while my wife was sitting 3 feet away?

REAL informed consent, as it applies to PC and PSA testing should require the physician to actually CONSULT with the patient, in an extended visit, with the spouse or other party of the patient's choice, on a date at least a week AFTER the diagnosis comes in. It's more than throwing a pamphlet or two at the patient and asking when they can schedule the surgery. If physicians don't want to do that....they they aren't doing their jobs.

And, I'm sorry, the "medical community" does not get a free pass on this. Saying "we're only doing what the patients want" is a cop-out, pure and simple. Just like telling us to read the fine print on the papers that comes with prescription eliminates their responsibility to clearly explain to us what a drug is for and what to watch out for when we take it. Or eliminates their responsibility to pay attention to what we tell them about our allergies and what other drugs we might be on, to keep us from having preventable side effects from the drugs they prescribe us.

It IS their responsibility and duty TO educate us, to make good information available to us, before we ask for it. It IS their duty to make sure we understand the good, the bad, and the ugly about what is coming our way, and what the downsides of the treatment they are suggesting to us are. Yes, it is up to us to ask questions....and what if we don't even know what questions to ask? Isn't it their responsibility to BE responsible TO US? Isn't that, ideally, what being a physician is about? What about 'first, do no harm' as a real principle?

When I see someone...a new member in this forum, who just showed up a few days ago, diagnosed G8 and literally being scheduled for surgery the day he got the diagnosis for two weeks later, I get angry. Not at the patient. At the doctor. That is borderline malpractice. What about the common refrain that "we don't even think about surgery until at least 6 weeks after biopsy"? Has THIS guy ever heard that one? (And I'm talking about the doctor, not the patient).

It's time for the professional community to stand up and own their collective responsibility to us, the living, breathing, human patients.

Sorry, I've been thinking about this a lot. Every time I see a drug ad on TV where it tells me to "make sure you tell your doctor about all the drugs you're taking", and then "ask your doctor if YOU are right for X". And then I hear my 87 year old mother...who is no dummy, who is a long way from being mentally incompetent...tell me about a visit to some doctor who left a scrip at the reception desk for her without saying word one to her in the exam room about it, and when SHE found out what it was for, refused to pick it up because she's had it before and knows it has miserable side effects and doesn't help one bit. And she wonders out loud, "did he even read my history, look at my record, or even listen to anything I said?"

Sorry, docs, you don't get to hide behind your white coats and your professional code of silence and pretend that WE are responsible for our own care, when you fail to give out good information and think that throwing a pamphlet at us after our 10 minute office visit is all you owe us.

End rant.

JackH said...

BillyBob@388 said...
...if many men are at risk for overly aggressive treatments so that the few may be saved, then so be it.

BillyBob, the well-documented number needed to (over)treat (NNT) for PC to save one life is 27. (ref. ERSPC.org) You can start embedding that number right in your sentence next time. Start asking for volunteers...or do you just want to pick amongst the many names here at HW/PC

Jack, help me out here. When you (or they) say "the well-documented number needed to (over)treat (NNT) for PC to save one life is 27.", exactly what does that mean?

Does that mean for every early detected G8/9/10 that receives treatment, one out of 27 will have their life extended or saved?

Or perhaps that only 1 out of the 27 with aggressive PC would ever have died anyway(forget about simply suffering with cancer symptoms for right now), therefore that 1 out of the 27 would actually be saved?

Or does it mean out of all of the PC cases diagnosed, including the least aggressive ones who probably need no treatment in the 1st place, If you treat the entire group you will manage to save one life out of 27 treated? If it is something more like the latter, then the way to greatly improve the numbers of lives actually saved by treatment is to simply stop with aggressive treatment for the very low risk, or at least not count them in the numbers for calculating lives saved.

In another thread about the MSKCC normograms(sp?) for life expectancy, I plugged my G9 numbers in, and the results were that out of 100 men with my numbers, fifteen years later:
1: 31 will still be alive
2: 27 out of 100 will have died of untreated PC
3: 42 will have died of other causes.(But, as far as I can tell, with an unknown number of all three groups which could have been suffering with advanced mets for many years.)

So 27% would have died of untreated PC and of the 31 still alive in the 42 dead from other causes, some unknown number suffering from PC but not having yet been killed by it.

I went back and did the pre-RP normogram(sp?), to see how the numbers stack up for treatment. These results were significantly different. 99% probability of cancer specific survival at 15 years with RP as primary treatment. Even though I only had a 19% chance of NOT having a BCR >.05 at 10 years. This still did not tell me anything as far as I could see about my chance of having metastasis and/or general suffering with the disease, even though only a 1% chance of having died of PC specific disease at 15 years, compared to the 27% for the untreated group. So that seems to me like a very significant improvement, definitely better than saving one life out of 27 that have been treated.(Plus, if PC specific death was significantly deceased- 1% vs 27%- would it be a logical guess to say that mets and suffering was also decreased a lot? Seems to me yes, but it is just a guess)

Plus there is this study: www.ncbi.nlm.nih.gov/pubmed/24510158

(And several more like) of almost 31,000 men with high risk PC treated primarily with a RP(13% had some sort of salvage RT) which showed 90% had not died of PC at 10 years vs only 80% using the MSKCC normogram and 82% vs 72% at 15 years.

Or, www.ncbi.nlm.nih.gov/pubmed/17296374 , with

Somebody said...
Median cancer specific survival was 7.8 years for conservative therapy and more than 14 years for radiation therapy and radical prostatectomy. The risk of cancer specific death following radical prostatectomy was 68% lower than for conservative treatment and 49% lower than for radiation therapy

So that sounds to me like a significant number of lives being saved, definitely more than 1 in 27 treated, though of course we all wish it would be more. However, that is also with surgery patients going back(In the big study of 31,000 men) as much as 25 years(31% had died of PC at 25 years) and most of these men did not even have salvage RT and obviously not the newest drugs available. I would not be surprised if a similar study of men treated with various current techniques or combinations thereof would show even better numbers.

So to me all of this sounds like more than one life is being saved out of 27 being treated, at least among the high-risk men. But help me to understand more clearly exactly what that one saved out of 27 treated means?

Again, if the number is so low because the biggest percentage of those being treated are low risk men, then let's just do something about over treatment of low risk men rather than preventing men with high-risk disease from getting an early diagnosis. Just because of a PSA test comes back at 5 or 10 does not mean that person has to end up with aggressive treatment. There is no reason that it has to.(There are at least a couple of reasons why it does often happen, but it certainly does not have to)

halbert said...
The question becomes, and it does have a very human face on it: How do you find the few that desperately NEED to be found early enough that effective treatment is possible without screening large numbers? Yes, it's all about education, and better tools to securely identify the ones that don't need treatment. And yes, even with better tools and education, it's provable that some percentage of low risk men will seek treatment anyway...and is that any different from a woman who carries the so called breast cancer gene choosing to undergo radical mastectomy because of it?

The medical community (by law) is all about providing "informed consent". And I'm an example of someone for whom that is a meaningless form signed at a moment of severe stress. Which isn't informed at all. I was in the ER with appendicitis, and I was presented with the informed consent form prior to emergency surgery AFTER I had had my glasses taken away and After a shot of morphine. What was informed about that? Why did they even present it to ME, while my wife was sitting 3 feet away?

REAL informed consent, as it applies to PC and PSA testing should require the physician to actually CONSULT with the patient, in an extended visit, with the spouse or other party of the patient's choice, on a date at least a week AFTER the diagnosis comes in. It's more than throwing a pamphlet or two at the patient and asking when they can schedule the surgery. If physicians don't want to do that....they they aren't doing their jobs.

There is a simple cure for this problem, and it would increase education quite quickly, and I can tell you I have seen it work in many other areas of surgery and medicine. I really hate to even say it, because I suffered from fear of this for 36 years. Still, it is a fact of life in this profession.

But do you want to end over treatment of low risk PC, at least all of it that comes from a doctor's/hospital's influence and often a desire to bill for a procedure? Simple. Low risk men, whatever % who also suffer from horrendous SEs and their lives are drastically changed for the worse, and then find out that they had a 1 or 5% chance of actually dying or significantly suffering from PC before a heart attack or stroke would kill them anyway, these men start suing. I can assure you that if that ever starts happening, suddenly doctors will be consulting with you, and getting you to sign papers a the office saying you understand and accept the well spelled out risk, and understand the numerical odds of the cancer causing you enough trouble to be worth chancing the SEs.

In fact, once the law suits started, the insurance companies would get involved, and docs would no longer be willing to take the risk of doing radical treatments for low risk cancer. And if they did, you would have to beg them after putting it in writing that you understood that you were in very little real danger and tat you were fully willing to live with the consequences. I think that right now there is(though not always) a lack of understanding of all of the possible consequences compared to the risk. But once there were a few large settlements by low risk men with ruined lives, that would end.

compiler said...
Redwing:

You nailed the issue 100% in your initial post.
Thanks to this ridiculous overtreatment mentality that seems to recommend that we eschew regular PSA tests, the panicky headlines 5-10 years from now will be the sad and surprising news that for some unknown strange reason men are now being dx. with late stage metestatic PC.

Oh, horrors.

Has common sense left us?

I'm willing to bet that 80% of HW folks were dx. due to a rising PSA. Now, we have the gall to recommend throwing that out??!!!

I can understand urging more AS in light of G6 results.

But to throw out the precursor of getting these results?

Insanity!

Mel

Oh, bloody heck, I forgot to mention this bottom line fact in my posts arguing to keep testing: from 1992 through 2005, the PC cancer death rate dropped from almost 300 per 100000 to about 170. From 87-91, an annual increase in the death rate of 3%/yr. From 91-94 a decrease in death rates of .6%, from 94 to 2005(as more and more PSA tests were done) an annual decrease of 4.1% per year! All as PSA testing became more and more common.
drcatalona.com/quest/quest_spring09_3.htm

Somebody said...
In an Opinion Piece Dr. Catalona wrote for the Washington Post (August 2008), he explained why the mortality figures are so much more important than the incidence ones:

In the United States, the rate of advanced cancer at the time of diagnosis has fallen 75% since the PSA screening era began, more than for any other cancer. Age-adjusted prostate cancer death rates have declined 37% percent. Statistical studies suggest that 45-70 percent of this decrease is due to PSA screening.
prostate cancer mortality rates graph

Evidence from U.S. cancer registries shows less advanced cancer and lower prostate cancer death rates in regions where PSA testing is more prevalent.


On a global scale, prostate cancer death rates have decreased in countries where PSA screening and active treatment are typically practiced and have remained stable or increased in countries where screening and active treatment are not practiced.

OK, I totally agree: low risk men diagnosed via PSA testing leading to BX are quite frequently over treated. However, clearly, far fewer men have been dying of PC since PSA testing came on the scene and led to earlier Dx. So, how about this: lets stop with the over treatment of low risk men and get a massive public service education going so that these men can not panic and can in fact resist docs pushing them to do something maybe over aggressive. At the same time, let's keep testing and saving lives as has apparently been happening. Why should some men be condemned to early death just because some other low risk men insist on aggressive treatment and because their docs don't inform them of their low risk even if they do nothing? And even pressure them to do something? Why can't we solve the one problem without sentencing others to death from PC?

Could Sue and her Hubby not have been helped by a Dx 5 years earlier, or even 2? Why should she have been denied that because one doc thinks PSA is over used?

JNF said...
I lay this overtreatment issue completely at the feet of the doctors. Just two days ago we had a G8 scheduled for surgery just two weeks after the biopsy. No consideration of second opinions, scans, other treatments etc. Only the doctor doing that. And what's amazing is that if the doc in question was worth fifty cents he couldn't be able do a surgery in two weeks because he would be booked for months in advance. That tells me he does a few every year and is not a true specialist. Call Tewari, or Samari, or Menon and see if you can get in next Tuesday. They are booked for months.

Sreening is not the problem....over zealous docs.

Maybe an open schedule is why he doesn't want to let one get away?

halbert said...
And, I'm sorry, the "medical community" does not get a free pass on this. Saying "we're only doing what the patients want" is a cop-out, pure and simple.

Sorry, docs, you don't get to hide behind your white coats and your professional code of silence and pretend that WE are responsible for our own care, when you fail to give out good information and think that throwing a pamphlet at us after our 10 minute office visit is all you owe us.

End rant.

Halbert, I absolutely agree with you and I think your entire post was well said. As much as I believe in personal responsibility I honestly think it is the medical community - in particular the urological community - who is letting us down.

I think routine testing of PSA at a certain age is the right thing to do, just like we gets routine tests for blood sugar and cholesterol. But, my PCP doesn't propose to remove my heart when the cholesterol is high but WAY too many urologists jump on the bandwagon for radical treatment at the slightest whiff of prostate cancer.

What the AUA owes us as patients and their own medical constituency is a statement of reasonable and customary tests and care. Speaking of tests, instead of worrying about some guys getting a PSA test, which might lead to life saving care, maybe they should stop doing the unnecessary bone scans that are so routinely ordered for patients with low grade and low PSA which are mostly a huge waste of money.

And, speaking of care, how about a DEFINITIVE statement about what circumstances (PSA, Gleason, cores, etc) would warrant AS as the FIRST CHOICE for care. Furthermore, rather than ripping out prostates of high Gleason, high PSA guys with an expectation that they will have salvage radiation, how about recognizing that radiation and ADT are likely a better initial choice.

I could go on. But my point is that I agree with Halbert, JNF and others who have laid this overtreatment fiasco right at the feet of the medical community - which is just where it belongs IMHO. Until they get their stuff together then we will continue to have overtreatment and they need to recognize that reducing PSA testing is an answer - it's just the wrong and lazy answer.

Now my rant is over.

Jim

Wow y'all, such thoughtful and impassioned responses! Thank you for the thoughts, for the kind words, the care that this forum expresses better than anywhere I've found in various pursuits on the web. I hadn't meant to further fan the screen/don't screen controversy, but I guess from the nature of my post it does inevitably lead that way.

Sue, your posts bring tears to my eyes. My new acquaintance and his wife were struggling, though she was rather stoic and clearly supporting her husband through his emotional disintegration. A caregiver faces such heartache, and lives with the whole situation, and even beyond, long after the loved one is gone. I hope you're finding support as time goes on. The doctors can't be so heartless as to just write off such cases by not screening. That kind of cruelty comes from the green eye-shade, insurance-company bean counters that never meet those they are condemning by such cost-saving policies.

And amen, amen, amen, to the responsibility lying squarely within the medical community. Most people won't challenge a doctor, won't question what they say, won't investigate options on their own, won't insist on a PSA test if the doc pooh-poohs it. (As an engineer, I'm pretty sure I'm a real pain in the patooki to doctors). We need a major public education effort about what PCa is, from the low risk AS end, to the high risk "pliers and blowtorch" (thanks to Steelguy) end of it. Thus to explain what the PSA test may or may not indicate, what even a positive biopsy may indicate.

It's not simple, and we live in a time that seems incapable of handling complexity. We just want a quick simple answer, world hunger solved by a simple feel good measure in 30 minutes or less. Education about the disease in all of its variety is the key, not avoiding screening.

Sue,
I think Dave is looking down on you and is so proud of your commitment to help others from going through the pain you and he did (are). Gary and I will have been married 21 years next week. Less than half of the time you were married to Dave. That in itself is quite an accomplishment in this day and age. Keeping you in my thoughts and prayers, Sue.
Beth