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NY Times op-ed on early detection and screening

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Posted 2/28/2012 7:19 PM (GMT 0)
Well, here's another article that is critical of early screening for various diseases, including but not limited too prostate cancer.  After reading it several times, I need to go take my blood pressure meds before I stroke out:  http://www.nytimes.com/2012/02/28/opinion/overdiagnosis-as-a-flaw-in-health-care.html

I can only conclude we all should have waited until our PCa became symptomatic before we troubled the medical community with our illness.

Posted 2/28/2012 7:38 PM (GMT 0)
Uuuugh! I guess it would have been better if my 45 year old husband didn't get that PSA (17.2). His gleason 4+3 would have eventually caused problems, and so who cares if we wouldn't get to grow old, HEALTHY, and happy together.

I am only 41, our children ages 9 and 11. I thank God for that PSA!
Posted 2/29/2012 3:35 AM (GMT 0)
Waiting for prostate cancer symptoms to appear is like not checking your blood pressure until your head explodes. Then it is too late. If there is a simple check for frequently occurring serious medical problems, why take the chance of a curable problem taking your life too early.
Posted 2/29/2012 4:36 AM (GMT 0)
I think the perspective is macro - early diagnosis does save some specific individuals' lives. however it causes more treatment, which causes more side effects, QOL issues, and even deaths of some other people - who perhaps would have survived for many more years.

not throwing bombs here - just trying to convey the argument.
personally, sometimes I wish I had never done a PSA test. other times happy to be PSA zero post-surgery
Posted 2/29/2012 7:39 AM (GMT 0)
it's a personal choice. It isn't over treatment if the person has cancer and decides he/she wants to treat it.

As for side effects and quality of life issues, the folks on that panel and the people critical of treatment and or proponents of AS continue to blindly ignore the tons of stories of people without SE. Seems to me that if they are going to make their arguments in an intellectually honest manner they need to take these into consideration and also focus on how treatment and medical professionals are improving every year and how these directly result in fewer or no SE at all.

People/organizations are invested in their own bias for personal reasons and financial reasons and it gets in the way of the facts.
Posted 2/29/2012 2:26 PM (GMT 0)
The best way to stop progress is to stop looking for it.

The current argument seems to be: health care is 'good enough' as it is, and probably too good given the cost. So, we should stop spending money on it and let the standard of care get worse to be less costly overall.
Posted 2/29/2012 2:32 PM (GMT 0)

davidg said...
Seems to me that if they are going to make their arguments in an intellectually honest manner

That was clearly not the intent, given the critera they used (not dead in 10 years - which we knew from very old studies is a point where doing nothing looks better) - dead in 11 years is a success. moving from T1c to T4 in 10 years is a sucess. Getting T4 is "more desirable" than "the uncertanty of waiting a few days for the results of a PSA test or biopsy."

Charlatans.
Posted 2/29/2012 3:08 PM (GMT 0)
 

RandomPseudoNym said...

Charlatans.

Interesting bit of back-and-forth name-calling, since the article itself (in greater detail) points out the charlatanic actions of the health care industry: 

Who is to blame? One answer is the health care industry: By turning people into patients, screening makes a lot of money for pharmaceutical companies, hospitals and doctors. The chief medical officer of the American Cancer Society once pointed out that his hospital could make around $5,000 from each free prostate cancer screening, thanks to the ensuing biopsies, treatments and follow-up care.

 

Posted 2/29/2012 3:14 PM (GMT 0)

davidg said...
it's a personal choice. It isn't over treatment if the person has cancer and decides he/she wants to treat it.

As for side effects and quality of life issues, the folks on that panel and the people critical of treatment and or proponents of AS continue to blindly ignore the tons of stories of people without SE. Seems to me that if they are going to make their arguments in an intellectually honest manner they need to take these into consideration and also focus on how treatment and medical professionals are improving every year and how these directly result in fewer or no SE at all.

People/organizations are invested in their own bias for personal reasons and financial reasons and it gets in the way of the facts.

Here's a tip for y'all. Everytime Dave here makes up his own facts it's usually associated with the word "tons". Now you know what to dismiss.
Posted 2/29/2012 4:04 PM (GMT 0)
Ziggy I forgot what your issues were, haven't read a post of yours in ages, but I seem to recall you had some issues and needed to believe surgery guys were duped into surgery. and that by doing so they were doomed and all was lost. Ain't so...

Read the "dry from day 1" thread posted earlier. There are a ton of people who are dry from day 1.

Read Yana, there are more than a ton there who have been dry immediately or quickly and just as many who are having healthy sexual relationships including intercourse with and without ED pills (which btw in the end is all the same imo vis-a-vis quality of life per se)

Go read testimonials on any hospital/surgeon site (contrary to your beliefs these are not fabricated).

The truth is that there are a TON of people who have minimal or no side effects and this perhaps just isn't convenient for people like you and the agenda you try to push. An agenda, that in my humble opinion, is driven by your own baggage vis-a-vis this disease.

It's a shame because besides celebrating the success/luck of the many without side effects, it's also your duty to be intellectually honest in acknowledging them. But I guess that doesn't rank high on your list of priorities yet.
Posted 2/29/2012 4:14 PM (GMT 0)
So infuriating.

I am the token case for what happens when you dont get early detection. I started checking my PSA when I hit 40, but for 8 years my PCP never bothered to mention that my PSA was rising steadily after every test. And I didn't ask for the actual numbers, thinking it was ok when my doc simply told me my blood work was 'fine". By the time he told me it was not "fine" in 2009 it was too late. MY PCa had by then spread outside the prostate bed, I have systemic cancer, did surgery, radiation and soon to start HT. Then there is always chemo/ provenge and MDV3100 in my future. How's that cost benefit looking now!!!!

And shoulldn't we put a value on the loss of QOL and the early visit to the beyond that may very well result from this lack of early detection.

So easy for those without the disease to argue $ when it doesn't involve them or their loved ones. Sorry, I'm usually not a ranter on this forum, but I can't help it in this case
Posted 2/29/2012 4:40 PM (GMT 0)
I see from a previous post that civility has started to fly out the window in this thread, but I would like to zero in on the final sentence of the article in question: "We would all be better off if the medical system got a little closer to its original mission of helping sick patients, and let the healthy be"

Seriously?

In other words, when I had the Gleason 7 cancer growing inside of me, revealed initially only by a rising PSA number found during routine screening, this guy would not consider me to to have been a "sick patient"?  I mean, I had no symptoms that sent me running to the doctor.....a bit of urinary urgency, but nothing else.  Easily explainable (in my mind) by being a 65-year-old male (at that time).  In his thinking, I should not have been PSA screened.

The author clearly would have had me wait until I was really "sick" (however he defines "sick") before seeing a doctor.

I just cannot fathom how any PCa survivor can think this is good advice for men's health:  don't get screened: wait until you're actually sick.  Do some of us actually advise our friends, and our sons, to avoid the PSA test and not worry about their prostate until their back pain no longer responds to chiropractic manipulation or over the counter pain meds?

All the PSA test does is send up a warning signal that something seriously wrong may be going on inside the body.  Why some folks are determined to make that into a bad thing remains a mystery to me, and a very dangerous mindset.

In my humble opinion, I was very sick indeed, and thank God for an internal medicine doc who still insists that his male patients have a PSA test done as part of every annual physical.

 

Posted 2/29/2012 4:55 PM (GMT 0)
Simply put, the only way that the claimed "overtreatment" and "negative impacts of testing" hold up is if you use the completely bogus criteria (literally, not dead in 10 years) which appear to have been pre-selected to "show overtreatment" and claim (as they do) that a few days of not knowing what your PSA number or biopsy result are is WORSE than getting advanced stage cancer, but not having those few days of uncertainty.
Posted 2/29/2012 5:04 PM (GMT 0)

davidg said...
Ziggy I forgot what your issues were, haven't read a post of yours in ages, but I seem to recall you had some issues and needed to believe surgery guys were duped into surgery. and that by doing so they were doomed and all was lost. Ain't so...

Read the "dry from day 1" thread posted earlier. There are a ton of people who are dry from day 1.

Read Yana, there are more than a ton there who have been dry immediately or quickly and just as many who are having healthy sexual relationships including intercourse with and without ED pills (which btw in the end is all the same imo vis-a-vis quality of life per se)

Go read testimonials on any hospital/surgeon site (contrary to your beliefs these are not fabricated).

The truth is that there are a TON of people who have minimal or no side effects and this perhaps just isn't convenient for people like you and the agenda you try to push. An agenda, that in my humble opinion, is driven by your own baggage vis-a-vis this disease.

It's a shame because besides celebrating the success/luck of the many without side effects, it's also your duty to be intellectually honest in acknowledging them. But I guess that doesn't rank high on your list of priorities yet.

As usual Dave your "facts" are once again in error. I never ever said guys were duped into surgery. I have said too many men panic and 6 weeks post dx are on an operating table, not having educated themselves on all options and possible side effects. In all my time here and since I was dx there aren't tons of men dry from day 1. I read that thread too and it's a small number when compared to all others who have had surgery. Most or to use your vocabulary tons of those guys are leaking anywhere for a few weeks to months post surgery. A tragic minority never fully recover and must resort to slings etc. I know your Doctors site and reading testimonies from any doctors site or hospital would be the last thing I'd do. Of course all the reports on their site will be glowing you won't see anyone with permanent incontinence being on the site, bad for business. I much more trust a site like here or Yana.

And if you insist on intellectual honesty near all treatments have permanent side effects. Can you ejaculate? Without being able to is your love life the same it was before? If your wife or maybe you remarry later and either woman desires a child or more can you father them? Not to mention the few tragic stories I've witnessed where the result of your nonside effects ended in divorce. There's intellectually honesty for you and real life relationship possiblilies post surgery.

My "agenda" has always been the same here. I advise guys to educate themselves fully on all treatment options and possible side effects. If they are low risk I'll agree with others that AS is an option. I confess to believing PCa is massively over treated and time has shown this to be true. The fact the expected massive drop in mortality after Psa testing began never happened as proof.

Now my agenda vis a vis my treatment is downright laughable. For myself and one other here are the most successfully treated men here due to a less invasive 21st century treatment. The only thing that has to do with my agenda is a view for AS that delaying treatment in time may make a cutting edge treatment like I had more available or to be able to find another new treatment in the clinical stage like I did. BTW even I have a permanent side effect I ejaculate now maybe 60% less than before. Thus I lived my "agenda" for I did not panic or read doctors sites I looked around , educated myself, and was very lucky I admit to not only find a clinical study locally but be admitted to it.
Posted 2/29/2012 5:13 PM (GMT 0)
as I and many others have said here, orgasm is actually more intense now (God only knows why). So in that regard things are better.

Without getting too graphic, as a healthy sexually active 40 year I do sometimes miss the opportunity to ejaculate. But that certainly wasn't and isn't a deal breaker. Of course was well educated on this reality prior to surgery.

Regarding having more children, or any children in some cases, I was well informed about this and it certainly wasn't an issue for me. I already have two and that's more than enough for me and certainly more than enough for my wife who had to actually do all the work to get them out. That said, I was informed that I could go to a sperm bank and that there are very expensive and complicated ways to attempt this post RALP if needed. Not interested in either.

Also, you seem to forget that 40 year old men like me are not the norm with PCa. Most guys seem to be well into their 60s and I'm guessing having kids isn't their #1 priority in most cases.

The truth is that more and more of us, given a number of contributing factors discussed many times before, have minimal to no SEs. Another truth is that this reality is NEVER acknowledged by some people with a vested interest in not accurately discussing and/or analyzing that fact.

Btw, a tiny minority of us PCa patients post on these forums or linger on them. The majority of people who go through this crap move on with their life. You can add a large portion of them to the TON of people who are doing just fine post treatment.

Off to the gym now.
Posted 2/29/2012 5:18 PM (GMT 0)
Ziggy, I've read previous posts where you talk about the TFT procedure you had and your description of yourself as perhaps the most successfully treated guy on the site.  I'm sure that's true and I'm glad for you, but I wonder what the criteria were that led to your being treated in that way?

Just asking because such a treatment would have never worked in my case.  The initial 12-core biopsy found cancer in the left lobe, but nothing in the right.  Subsequent pathological examination after surgery found threads of cancer on the right side as well, though the primary tumor was, indeed, on the left.

I can't imagine that even the latest color doppler imagery can guarantee that the cancer is all concentrated in one tumor in one particular location of the prostate.  My understanding has been that prostate cancer usually is multi-focal, and thready throughout the gland.  Maybe a separate thread explaining how that was all determined in your case would be worthwhile and very interesting.

In the meantime, let me just say that Davidg's experience may not be typical, but it is what it is and he certainly is not alone.  It's a side of the PCa experience that I think deserves to be available to those new to the forum.  Things aren't all gloom and doom.  I have the SE side effect and can't say I'm happy about it, but I also have said before that I think it's unrealistic to expect ANY cancer treatment, or really any major surgery, to be without side effects.  To forego screening and treatment because there may be side effects seems like an unrealistic attitude and a very bad idea to me.

Posted 2/29/2012 5:34 PM (GMT 0)
clocknut said...
Ziggy, I've read previous posts where you talk about the TFT procedure you had and your description of yourself as perhaps the most successfully treated guy on the site. I'm sure that's true and I'm glad for you, but I wonder what the criteria were that led to your being treated in that way?
Just asking because such a treatment would have never worked in my case. The initial 12-core biopsy found cancer in the left lobe, but nothing in the right. Subsequent pathological examination after surgery found threads of cancer on the right side as well, though the primary tumor was, indeed, on the left.

I can't imagine that even the latest color doppler imagery can guarantee that the cancer is all concentrated in one tumor in one particular location of the prostate. My understanding has been that prostate cancer usually is multi-focal, and thready throughout the gland. Maybe a separate thread explaining how that was all determined in your case would be worthwhile and very interesting.

In the meantime, let me just say that Davidg's experience may not be typical, but it is what it is and he certainly is not alone. It's a side of the PCa experience that I think deserves to be available to those new to the forum. Things aren't all gloom and doom. I have the SE side effect and can't say I'm happy about it, but I also have said before that I think it's unrealistic to expect ANY cancer treatment, or really any major surgery, to be without side effects. To forego screening and treatment because there may be side effects seems like an unrealistic attitude and a very bad idea to me.


To qualify for TFT one needs to undergo a 3D mapping saturation biopsy. A link below will show you how it's done. You have to be low risk and the last I recall about 55% pass and go on to TFT while the other 45% have more widespread PCa than thought and are urged to go to more aggressive traditional treatments. I'm back to add a few things. Of course even with many cores PCa can still be missed on the microscopic level. The success rate of TFT I was told is about 90% now of 500+ cases. It's also why the study had me do two annual normal biopsies post treatment. Originally they were supposed to be mapping biopsies too. Whew!!! glad they weren't 45 needles was sore afterward. Now I'm just doing an annual exam and psa.

http://3dprostate.com/videos/mapping-biopsy.html

Yeah I know Dave's experience are likely valid, but I notice when he starts using the word "tons" it a clue he's pulling facts out of his ass again. He also believes we all should be cheerleaders here only. While support is fine most guys come here for answers and knowledge and a need for the facts. Not primarily for pep squad replies.
Posted 2/29/2012 7:43 PM (GMT 0)
While it's against my very nature, I have to agree with Dave. There ARE tons without side effects.. which at 200lbs each, equates to 20 men out of hundreds of thousands.

If I didnt know any better (which come to think of it, I dont), I would almost be jealous that I didnt have the same wicked awesome prostate expeeience that his hero doctor granted him.

He says "Btw, a tiny minority of us PCa patients post on these forums or linger on them. The majority of people who go through this crap move on with their life'..

ONLY TO BE SURE AND TELL TELL US ALL THAT HE'S OFF TO THE GYM, MR AMERICA...

He was immediately cured, has no side effects, serves to do nothing but piss the rest of us off.. then has the nerve to call what WE do 'trolling".

He talks about more and more of us having no SEs... I dont know HOW he knows that or WHY he would.. other than thats what HIS DOCTOR KEEPS TELLING EVERY ONE.

Kids.
Posted 2/29/2012 8:07 PM (GMT 0)
DavidG,
I too have no side effects, but realize, unlike you, that I am among the lucky few and neither your results or my results are typical. The average age of a PC patient is 67 and his results will not equal a 40 year old in both healing time or the ability to recover potancy.
The published side affects accross a broad spectrum of patients is ED in excess of 50%; permanant incontinence at 11% and minor incontinance of 70% at 2 years. Other severe complications including death are around 2%.
If you do better than this consider yourself lucky. To insinuate that most patients will have no side effects is irresponsible in light of the known and published facts. Patients have the right to have reasonable expectations about treatments and giving a patient unrealistic expectations is a disservice to them.
JT
Posted 2/29/2012 9:54 PM (GMT 0)
Wow. I wish I could speak as well as John.
Posted 2/29/2012 10:21 PM (GMT 0)
I think the perspective is macro - early diagnosis does save some specific individuals' lives.

most significantly the PSA test saved my life.  anyone who wants to stick their head in the sand has the option.  tell your doctor not to check the box next to PSA on the lab slip.

ed

Posted 3/1/2012 12:26 AM (GMT 0)
Bob - seriously, you're like my personal stalker. It's really not attractive. I think you've posted 4-5 times in the last month and all of them are off the wall responses to my posts. Perhaps a moment of reflection is in order where you ask yourself if this is what you really want to be doing with your time.

Statistics show, depending on source, that anywhere from 40% to 60% of people don't have any or all of the typical big issue side effects. Spend some time counting how many people have treatment and you'll add up tons of people. My amazing surgeon has even better numbers btw. All I'm saying is that the groups that stand to profit financially (like that doctor you quoted) or psychologically from ignoring the significant success stories resulting from surgery or other treatments are not being intellectually honest and ignoring all the people who day after day tell new victims of this disease that they got through it okay and that the either suffered no side effects or minimal side effects.

Take the new thread on urinary issues post surgery and the possibility of being dry right away. Some 15-20 people posted they didn't have issues post surgery. How many different people post here daily? maybe 30 on a good day? well that response in itself should help you realize just how good the chances are of not encountering that specific side effect. I don't know about you, but a thread like that would have been very valuable to me had I had the chance to read it before heading into surgery. And mind you, I had opted for surgery knowing full well I might end up with urinary issues. The truth is that there are many reasons that produce the success stories that minimize or eliminate side effects. Reasons such as great surgeons, great hospitals, age, fitness and probably a little luck too.

Same with ED. When i first got cancer I went on Yana (hadn't discovered this site yet and perhaps that was a blessing given the negativity that exists here with some) i communicated with many guys who were in my age range and had opted for surgery. They all emailed me positive stories including how they didn't lose sexual function. I actually saved them because they were so inspiring to me at the time. Here's an excerpt of one:



Somebody said...
Now for the important part, sexual function. This is the one that can really hit you hard early on. This varies so much from guy to guy and how doctors deal with things. Dr Zagaja makes his patients take Viagra 3 times a week for at least a year. It falls into that use it or lose it area. You will want to check with your insurance company to see what your drug plan allows. In my case I had to get a waiver to get the 12 pills a month as my plan only allowed 8. I also found that the 50mg pills worked for me, so I got the 100 mg and split them, thus doubling my quantity. Your doctor may also recommend Calais as it says in the system longer and guys in our age group seem to like it better. The nerves will have trauma even thought they are not removed as the prostate needs to be peeled away from them. They continue to heal for up 24 months I think. In my case I had nothing happen for the first 2 months. I did get pretty firm erections with the Viagra. Again at month 3 it was like a light switch. I am now 10 months post of. I would say I am 99 percent of where I was prior to surgery with incontinence. and about 90-95 percent of where I was sexual functions wise. With the Viagra I am like an 18 year old kid again. The strange part will be that you will have no ejaculation at orgasm. That was a little strange at first. In my case, sex is no better and no worse, just different. Everything else feels the same. I have heard some guys voice frustration that they cannot get an erection without the pills. My feeling is it does not matter how you get it as long as you get it. There are several different drugs Viagra, Calais, low does Calais for everyday. If you have to take a pill to get an erection, so what. Your alive, you beat cancer, your still able to have sex. This is where you really need to include your partner in your thought process.

Bob, now that's a positive, and as a ton more can confirm, accurate message.

Have a good night.


ps - I only mentioned gym because I finally started going again after a year of feeling sorry for myself for being a cancer victim at 40. I think it geting out of that victim mentality is important for all of us.

Post Edited (davidg) : 2/29/2012 5:29:16 PM (GMT-7)

Posted 3/1/2012 1:06 AM (GMT 0)
Davidg,
If you really think that a 50% rate of permanent side effects and a 30% failure rate for anything above low risk is good, then the standards you are setting are pretty low for something considered "the gold standard". This is not a comment on surgery, but a comment on callling any standard "gold" that has such a misarable failure rate and for us patients accepting such low standards.
If you pick out any page on this forum you will find that 50% of the posts deal with treatment failures or treatment side effects. I have done this a number of times over the last few years and the 50% number is fairly accurrate.
My only point is that we should be realistic about expectations for any treatment and recognize that 50% of the time one will have a major issue, and that all patients go into treatment with their eyes open.
JT
Posted 3/1/2012 1:53 AM (GMT 0)
50/50? if you were a slot machine in Vegas you'd have the best odds in the house...

Well, that's just a cute quote from a movie I recently saw that was about a young guy getting cancer.

Yeah, if the number of people who suffer no SE were 50% I would consider that very promising. Perhaps I'm just very optimistic but I'd like those chances given the alternative. Like I said, I was ready and willing to suffer SE and feel blessed that I didn't. Who knows, perhaps my optimism had something to do with that.

as for the actual numbers, I know of many surgeons, such as Patel in Florida, who claim 96% success rates. My surgeon also talks about similar numbers and I can confirm that although anecdotal in nature, I have spoken to many of his patients (i sought them out prior to surgery and have talked to some after) who in fact claim that they suffer no issues. I can only take them at their word and have no reason to doubt them because I too don't suffer from those two side effects. I suffered from mild depression and post traumatic stress instead. Two things I hadn't considered at all while thinking over my options.

Also, lets say the actual umber is 50%. Well, I think we can agree that robotic surgery is a relatively new technique and that the results of these surgeries are getting better and better quantitatively and qualitatively every year because of a) better and more experienced surgeons, b) better technology, and c) more younger guys in the mix as a result of effective screening. If one believes this, and I do, that 50% will soon be 60% and keep moving upwards. Many guys who underwent this procedure did so as guinea pigs or with surgeons who were basically still in training.

I truly believe that it is critical for newly diagnosed patients who stumble across pages/sites like this to read about all the success stories. All hope is good for guys who are where I was only 16 months ago. If someone chooses surgery, it's good for them to hear about the 50% success stories. And it's good for him to hear that technology and surgeons have improved thereby making that 50% number outdated. After all, he's already decided through his own analytical reasoning to have surgery and knows fully well that he risks ED and urinary issues along with his primary concern, positive margins.
Posted 3/1/2012 4:02 AM (GMT 0)

John T said...
Davidg,
If you pick out any page on this forum you will find that 50% of the posts deal with treatment failures or treatment side effects. I have done this a number of times over the last few years and the 50% number is fairly accurrate.

A "fairly accurate" way to come up with a throughly misleading number, John. If you think the average page on this forum represents anything remotely like a statistically valid cross section of patients, I'm going to laugh my behind off.

Your method excludes/undercounts all the folks that stop by once a year or once every 6 months to report that they are doing fine - not to mention the ones that don't stop in at all. Meanwhile it counts the folks who are having problems and need to vent about them multiple times.
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