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Are Prostate Cancer Tests Worth the Trauma?

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Posted 3/11/2009 6:56 PM (GMT 0)
http://abcnews.go.com/Health/CancerPreventionAndTreatment/story?id=7049270&page=1


I saw this on the news yesterday. It's confirming more and more the opinion I have that many men are overtreated. Without having any real symptoms of Pca I always had a hard time accepting that radical therapy in my case was ever needed. Indeed for me and others with low risk and organ confined PCa the cure did seem worse than any projected disease. I admit being divorced with grown children let me weigh options more against the possible radical lifestyle changes be they hopefully just temporary for a few years (better case scenario) to just possible longevity. Or in other words I could never pull the trigger to accept radical removal or destruction of my entire prostate and the incontinence and ED problems I would awaken with. Although the former was always my primary concern. I'm very fortunate the local university Urologic Oncology staff also have the opinion of these being days of mass over treatment. I was able to become a patient there and had it confirmed by 3D saturation mapping that my PCa was indeed early stage and doing nothing to the minimal TFT therapy was my choices. I did choose the TFT but looking back, could I have gotten by with watchful waiting for years? Possibly but the minimally invasive freezing of a small section of my prostate resulting in continued continence was an acceptable option especially compared to radical therapies. True I did have a minor ED problem with the argon freezing being close to the nerves but my doctor was correct in stating a viagara kick start was needed. Now the ED problems are near like pretreatment, and I confess before I wasn't like a 19 year old anymore anyway. This of course is not applicable to those with advanced PCa but as I stated before these days will be a time people look back as the days of over treatment for many. I'm fairly confident anymore something else will kill me before PCa and maybe that had always been true.

Thus I return to my mantra here to the newly diagnosed. Take your time before deciding what to do for after there are no do overs.
Posted 3/11/2009 8:07 PM (GMT 0)

"To each his own."

If there was some little magic pill you could take that tells you that you have 10 days before the cancer gets outside the prostrate, then I might have considered waiting.....

Posted 3/11/2009 8:16 PM (GMT 0)
After 4 bouts of cancer so far in my life, any watching of cancer cells growing and multiplying doesn't add up for me personally.

David
Posted 3/11/2009 8:37 PM (GMT 0)
The videos that Tony posted a couple of days ago are very informative on the issue of watchful waiting and over treatment.
John/T
Posted 3/11/2009 8:46 PM (GMT 0)

I saw this on the news a day or so ago as well. It brought back to mind my reply to the urologist who suggested that I have a PSA test since I was over 50. I said "that I had read several articles that indicated that PSA was being over used and that it was not always an accurate predictor of PCa thus I had never taken the time to have one. Besides cancer was not prevalent in my family." Long story short, after some discussion, I said go ahead it can't hurt and I was sure that it would be negative. No symptoms. no family history.

Fast forward to one month later and a PSA of 21.5 and positive for 12 of 12 cores with a Gleason of 4+3 and potential lymph node involvement. Do I think that I was overtreated? Not by a long shot. Just thankful that the urologist was a bit more hard headed than I am.

And today I just returned from my first follow up after radiation and my PSA is .38. Oncologist was quite pleased and so was I.

Don

Posted 3/11/2009 9:28 PM (GMT 0)
hey all calm down. As this report stated it only 23 - 42% this may be applicable to, not 100%. Of course there are mitigating factors such as a family history of Pca or as someone said earlier developments of cancer cells elsewhere.

In contrast there's also a sizable amount of those who panic and need it out yesterday or sooner!!!!! Most here realize that most Pca is slower to grow than other cancers, but some just can't accept the difference emotionally. We've all seen those who are dx and 5-6 weeks later without any other opinions are undergoing radical treatments.

As far as requesting psa tests I never had to and most friends I know have them when blood was taken for physical and other reasons too. For most being over 50 triggers that test to be added as SOP.

Remember once again the above report has a 23 - 42% estimate not 100%.
Posted 3/12/2009 1:13 AM (GMT 0)
Hey Zig,

What Trauma? PSA tests are painless and biopsies are only uncomfortable for nearly all of us.

I'm really glad you aren't my uro!!! Your insistence that guys should wait after an elevated PSA or should refuse the test or not get a biopsy or further testing done is (IMHO) the worst thing a person with cancer can do. Treatment, even surgery is not the end of the world, or even the end of a good sex life. Plus the knowledge that the cancer is GONE makes the rehab effort worth it.

Got cancer? Get rid of it!!!

Jim
Posted 3/12/2009 1:37 AM (GMT 0)
Dear Zig, I made my choice because I wasn't getting any younger and to have this around my neck a few years down the line may have made it more debilitating and taken longer to rehab. What did Satchel Paige say? "Don't look back because they might be gaining on you." Good luck in April, brother.
All the best,
Bob
Posted 3/12/2009 2:18 AM (GMT 0)
Am I missing something here? Are men getting surgery based on psa alone? I hope not. But if a biopsy shows cancer cells it calls for immediate concern. I agree with some others here that leaving  cancer cells in your body with the hope watching them and treating them will eliminate the cells can be dangerous. Continance and potency are fantastic but allowing the cells to possible escape the prostate was not a chance I want to take. Others have a different view on this but this is mine.
Posted 3/12/2009 3:37 AM (GMT 0)
Biker90: great answer! I like the spirit of that post.

David in SC
Posted 3/12/2009 12:31 PM (GMT 0)

Realziggy,

I was told, at 41, surgery was my only option. Looking back, I think I would have made the same choice again. However, I also saw the news the other night. The interviewee was Peter Scardino, head or Uro at Memorial Sloan Kettering, probably the most well-respected cancer hospital in the world. He is also author of 'The Prostate Book', which I read after being diagnosed.

I agree with the others here that ignoring cancer, or even the possiblity of cancer, is not the best idea. Having that said, I appreciate your opinion on this and think it is important to have all the information when considering options. For some men, 'wait and see' may well be an option that should be considered.

Point is, considering the source, I think you've provided valid information and a worthwhile opinion. And any valid information is good information.

Smokie

Posted 3/12/2009 3:26 PM (GMT 0)
Let's see...
Prostate cancer survivors:
Charles Snuffy Myers ~ Well known prostate oncologist, Stage IV G9. Surgery, radiation, ADT3 And dietary changes.
Paul Schellhammer ~ Former President of American Urologic Assiciation, and Society of Urinary Oncology, brachytherapy/EBRT
Fred Lee ~ Well known prostate cryologist ~ treated in clinical oncology
There are many more...Vogelzang told me he would start at surgery but does not have the disease.

ABCNews: is it worth it?

I chose for myself to go with the silent answers provided by three of the top dogs in prostate cancer medicine. This is a good post, however. Even though I know it boils the blood of some here but that's the good thing. When journalists go to press or on TV they should, like a pack of cigarettes, have a warning label. Ziggy's opinion is not off kilter for many, but might be for the majority. We have to remember that this disease is unlivable for many. The mere thought of cancer and it's unpredictability make this impossible to live with for so many. The unpredictability also makes this article ambiguous and not really good for the mainstream. Not all prostate cancers are incurable.

I allowed my image and story to be used for a large scale ongoing campaign to get more funding from the DOD and our leaders for prostate cancer research because it is my opinion that we stay with it and try to get that vaccine, that better treatment, or that cure. And I appreciate what ABC and other news agency's are doing when they publish on both sides of these argumant (and they all do). And that is sell air time. Nothing more.

Overtreatment? Some. Over discussed? I think so. I personally would like to see more proof that we are over treating prostate cancer or any form of cancer than opinions expressed here. ABCNews opinion is heard here this time. And the last time I heard them was when Abiraterone became news and ABCNews shot off that a cure was reported. Now will we ever find a cure if we dont treat it?

Peace,
Tony
Posted 3/12/2009 3:52 PM (GMT 0)

biker90 said...
Hey Zig,

What Trauma? PSA tests are painless and biopsies are only uncomfortable for nearly all of us.

I'm really glad you aren't my uro!!! Your insistence that guys should wait after an elevated PSA or should refuse the test or not get a biopsy or further testing done is (IMHO) the worst thing a person with cancer can do. Treatment, even surgery is not the end of the world, or even the end of a good sex life. Plus the knowledge that the cancer is GONE makes the rehab effort worth it.

Got cancer? Get rid of it!!!

Jim


I believe what they meant by trauma is emotional trauma. Such as I was feeling fine, I get a physical and a few weeks later I'm picking in theory the odds of being incontinent and impotent. Yes that was traumatic. I never insisted no such thing about refusing psa or not getting biopsies. You're putting words into my mouth that was in the report. No surgery is not the end of the world but for those who remain incontinent years after is a radical lifestyle change. On top of that surgery is no guarantee it's all gone as we all know by after surgery radiation here some have to do. Not all cancer is the same. Generally PCa will not kill you as quick as lung or pancreatic cancers we all know that. Treatment should not be reduced to a catch phrase. If in your 80s and you're diagnosed with Pca you shouldn't go by "got cancer get rid of it" In fact until all this testing how many men died with Pca unbeknownst to them and it not being a factor in their demise? Millions I'm sure.

Also I'm long on record for those diagnosed in their early 40s to opt for surgery. I'm talking more here about the common dxs of men in their mids 50s and older with early stage organ confined Pca.

It's not like Sloan-Kettering is run by quacks hawking miracle vitamin cures

As I keep having to point out this report had to do with just 23-42% of those diagnosed not 100%. Plus it's human nature to not regret ever opting for your individual treatment nor should you for what you knew at the time. But I do say in time there will be less men opting for radical treatment who just have low risk Pca. Like I said before which I got grief for the so called "gold standard" is not forever. Medical science does advance.
Posted 3/12/2009 4:21 PM (GMT 0)
The facts are that if you have low grade PC, gleason 6, PSA under 10, two cores with small % of cancer, then Active survelance is a good option. In major studies about 25% of patients have progression in 3 years and have to be treated. This means that 75% don't have any progression of their PC. There is a risk of the PC metastizing, but it is very small.
The majority of patients in this risk catagory can put off treatment and corresponding side affects for many years with little risk.
If PSA rises or if biopsies show an increase in gleason grade then treatment can be done at that time.
If you are willing to live with the emotion of having cancer in your body its a good option. UCSF has a major study undergoing on active survelance. If I had these low stats I would definately opt for this option even if it meant delaying side affects for only three years.
JohnT
Posted 3/12/2009 5:06 PM (GMT 0)
IMHO ~ Too general, John,
If you have a PSA under 10 and a G6 you MIGHT be able to watch and wait. First point, a biopsy may have only caught G6. You MIGHT have G9. If it were me I would continue to monitor PSA's on PSA 4 or less with quarterly PSA's and if the velocity is showing climbs then no way. Then intervention is wise before it reaches 10. Any G6 with PSA's above four are not predictable to the point where you can say what someone should do. But if one is at a PSA of 5 and chooses to watch, I can understand that. If the next three tests for example hover in that area, then yup wait again. But the problem is that there are many cases like this where a later test down the road is a sudden PSA climb to above 10. Regrets will likely happen that they could have acted earlier, would you not agree? Particularly if the disease has now escaped the prostate capsule.

I like this discussion. The disagreements echo the published argument.

Peace...

Tony
Posted 3/12/2009 7:23 PM (GMT 0)

Hi Guys:

This is a great thread as it allows us to explore an important topic with different viewpoints as well as the addition of new information.  As far as the PSA testing is concerned, I am firmly in the camp with those who believe regular PSA testing is a good thing.  I have said before...knowledge is power.  Armed with the knowledge of PSA score, an individual, IMHO, is better able to make future decisions.  Not having that knowledge, again IMHO, is like putting your head into the sand.  So, I personally think anyone is nuts to forego regular PSA testing.

Having said that, there is the issue of overtreatment.  Personally, I'm a big believer in personal responsibility.  No doctor forced me to get a biopsy and no doctor forced me to undertake PCa treatment.  I did the research and made informed decisions on both counts.  If I get overtreated for anything it's not because I had some test or some doctor made me do it.  My treatment is MY decision and if I get overtreated it's because I was to blame.

Re the issue of "watchful waiting", "active surveillance" or, as Johns Hopkins references it, "expectant management", had I had the right stats I would have chosen that course.  I didn't and don't regret choosing treatment.  Re Tony's comment about John being too general, here are some specific guidelines from Johns Hopkins for patients they allow into there "expectant management" program:

1.  Age 60+.

2.  T1C, i.e. nothing felt on DRE.

3.  PSA density of .1 or less (this is PSA divided by size of prostate, e.g. PSA of 3 divided by prostate size of 35cc equals PSA density of .086 which is less than the .1 threshhold.

4.  Gleason 6 or less.

5.  2 or fewer cores of cancer.

6.  No core with more than 50% cancer involvment.

So, you can see that these requirement eliminate most of us.  In other words, only older men with VERY early state PCa are suggested to consider "expectant management".  However, for those that do, they undergo frequent PSA testing and biopsies and, as John mentioned, only a small percentage require treatment after 3 years.  Hence, these men don't get "overtreated".  To take this approach, however, DOES require a mindset of living with cancer, something many men cannot do, hence their urgency to "get it out".  Those men may indeed be "overtreated", but it's because of their own decision making not because they took a PSA test...

Respectfully submitted,

Tudpock

Posted 3/12/2009 8:28 PM (GMT 0)
Tudpock,

As usual, a well thought out post, and you brought home some good points, I agree with your thinking.

David in SC
Posted 3/12/2009 9:39 PM (GMT 0)
The test or not to test argument rears it's ugly head all too often. And, like the ABC article that starts off quoting experts from the Netherlands and then jumps to a partial statistic on US men from 1985 to 2000, they seem to contain enough facts for validity. How old were the 23 to 40 percent that would have died of something other than prostate cancer ?

In some European countries health care is provided by the government and somewhat rationed and discouraging testing is to the governments benefit. In the U.S. the baby boomers are about to overrun our current healthcare system and care is going to be harder to get in the timeframe we now enjoy. With further government intervention the fear of rationed healthcare has been expressed. Our insurance companies and medicare systems would probably like to discourage testing as well.

My fear is that some guys, reading fact into some of this fiction, will put off getting a PSA or a biopsy that may save their life. All articles and information is suspect of alterior motive and should be vetted by reliable sources.

Whats the expression, trust but verify.

Dave
Posted 3/12/2009 10:23 PM (GMT 0)
Here is my take and NO I dont have Pc that I know of anyway. My URO said the same thing I have heard many say and its this; If you biopsied every man over 20 years old enough times or cut their gland into enough pcs you could probably find SOME Pc in the majority of them. There has been studies where they have done this on dead bodies of younger men and found the same thing.

 The theroy is alot of these would never amount to anything that would kill you. Also IF you go to a surgeon he will say "get the surgery" an oncoligst will say" get radiation" I think they are implying that its a business and alot of URO's feel we are doing surgerys that are NOT nessasary.

 Many URO's and yes ones from major cancer hospitals say we are too quick to react when we hear the dreaded C word. I guess its all up to each of our decisions but this is what the experts are saying....

I pry I never have to worry about it..

Posted 3/12/2009 10:32 PM (GMT 0)
cvc,
I am thankful that you don't have PC at this point in your life, and I pray you never do. I read your post, and I respect your opinion, as all our opinions are equal here, at least to me. But I strongly disagree with your sentiments. There are still over 250,000 genuine new cases of PC a year in this country, and probably be a whole lot more if more men would get tested, and there are still over 25,000 deaths a year reported. Big killer of men. And this doesn't account for who knows how many tens or hundreds of thousands of men that do have PC in low doses and non-agressive strands that might never know in their lifetimes that they even had it.

When you have the real dx for PC, its not just a simple knee jerk reaction to the "C" word as some indicate. If you were in your 40s-to around 60, and you had a firm dx for PC, it will make you examine the whole rest of your life. It will make you think about your spouse, if you have one, your children, if you have them or want them in the future, you go through an immense range of feelings, thoughts and emotions.

My doctors didn't push me into anything against my will, nor did they think I was overeacting, I listened to their opinions on my many tests, scans, etc, and took into account their educated opinions of where they thought I stood then, and in the future, if I chose treatment, or if I didn't choose.

Some how, your post struck a sore nerve with me, perhaps I am just being too sensitive.

David in SC
Posted 3/12/2009 10:33 PM (GMT 0)

stxdave said...
The test or not to test argument rears it's ugly head all too often. And, like the ABC article that starts off quoting experts from the Netherlands and then jumps to a partial statistic on US men from 1985 to 2000, they seem to contain enough facts for validity. How old were the 23 to 40 percent that would have died of something other than prostate cancer ?

In some European countries health care is provided by the government and somewhat rationed and discouraging testing is to the governments benefit. In the U.S. the baby boomers are about to overrun our current healthcare system and care is going to be harder to get in the timeframe we now enjoy. With further government intervention the fear of rationed healthcare has been expressed. Our insurance companies and medicare systems would probably like to discourage testing as well.

My fear is that some guys, reading fact into some of this fiction, will put off getting a PSA or a biopsy that may save their life. All articles and information is suspect of alterior motive and should be vetted by reliable sources.

Whats the expression, trust but verify.

Dave


So you think Dr Scardino of Sloan Kettering or Dr Crawford of the University of Colorado are part of some huge conspiracy whose aim is to screw over patients so that private insurance companies would benefit from less testing and more death? Do you think a test reported in the Journal of the National Cancer Institute is fiction? The expression "trust but verify" was used in treaties with the commies not too long ago, sorry if I see some humor when you apply this to the NCI or those who are doing PCa research. BTW I include the University of Colorado here too for not only being a patient there but for being a major PCa research center whose clinical studies not only including my TFT but a number of other studies including the accreditation of HIFU. Do they and Sloan Kettering really need to be vetted for just suggesting a sizeable number of PCa patients may not need radical treatments? Do you see black helicopters flying around your neighborhood?

I don't think of this as a test or not test issue but more a to opt for a radical treatment or not irregardless issue. Plus as I said before most PSA testing I ever heard of is SOP for men over 50. It's not needed for men to normally request that, maybe for those age 40+ you could make a case for that.

I continually find it surprising that so many guys with Pca really seem to want the current treatments to remain that old so called " gold standard" indefinitely? When in breast cancer the primary treatment went from mastectomies to lumpectomies was there this much resistance from past breast cancer victims? I wonder? For that basically what my TFT is and I swear some here want that to fail to just justify radical surgery they opted for. Or at least there's an undercurrent of that from a few, I believe. In the future I'm sure that my TFT will be performed by HIFU instead of cryotherapy. That's great I don't want to see any less invasive a treatment fail, but that's just me I guess.
Posted 3/12/2009 11:33 PM (GMT 0)
Dear realziggy:

It's just my opinion, but I think your response to Dave was unnecessarily sarcastic.  He may have mixed in some governmental assessments but I thought his point was clear, i.e. that he believes in testing (as do I).

The basis is of his belief may or may not suit your logic path, but he is certainly entitled to his opinion without being ridiculed.

Re your point that some on this forum hope your treatment fails, I have not seen any evidence of that.  Sure, each of us have a vested interest in the treatment we chose...that's natural.  But to suggest that people wish you failure because of that is a little harsh IMHO.

As for me, I sincerely hope your treatment succeeds beyond your wildest dreams.  I truly hope that TFT or HIFU or cyber-knife or some other less invasive treatment becomes the norm for our younger breathren.  In the meantime, I tried to make the best choice for my case and I don't criticize anyone else for their choice, be it "gold standard" or not.

Just my take on your post...

Tudpock

Posted 3/12/2009 11:53 PM (GMT 0)

Pls try and read my post, these "opinions" are from EXPERTS in URO from Solan Kettering and many hospitals, hey Im just a knucklehead what do I know but alot of what they say does make sense. Again these are Doctos and specialists that have given their expert opinion and results of tests.

 Dont shoot the messenger nono

Posted 3/13/2009 12:11 AM (GMT 0)

Tudpock18 said...
Dear realziggy:


It's just my opinion, but I think your response to Dave was unnecessarily sarcastic. He may have mixed in some governmental assessments but I thought his point was clear, i.e. that he believes in testing (as do I).

The basis is of his belief may or may not suit your logic path, but he is certainly entitled to his opinion without being ridiculed.



Re your point that some on this forum hope your treatment fails, I have not seen any evidence of that. Sure, each of us have a vested interest in the treatment we chose...that's natural. But to suggest that people wish you failure because of that is a little harsh IMHO.



As for me, I sincerely hope your treatment succeeds beyond your wildest dreams. I truly hope that TFT or HIFU or cyber-knife or some other less invasive treatment becomes the norm for our younger breathren. In the meantime, I tried to make the best choice for my case and I don't criticize anyone else for their choice, be it "gold standard" or not.



Just my take on your post...



Tudpock

Let's recap. He starts off by attacking the veracity of Dr Scradino and the Journal of the NCI. He then infers anyone with a contrary position to his is in league with the insurance companies and the "medicare systems"(whatever that may be), to discourage testing thus promoting death I guess. And then finally dismisses it all as fiction with a warning that some guys may read some fact into it. Gee thanks Dr Dave I'll trust Dr Scardino and the NCI instead. Oh and I almost forgot this one. He uses the old phrase to trust and verify. That was used in treaties with the commies back in the 80's. To use it to refer to the above Doctor or institute is to also then to refer to them as the enemy. Sorry if you don't find that odd, but I sure do.

The part with my hoping some wanting my treatment to fail may be somewhat overstated I'll agree. But there are some and it's only natural hoping that their treatment wasn't only the right choice them but for years yet to come. No one later wants to regret what they went through, that's understandable. For those who are here with other treatments than radical surgery may identify more with what I am saying. I know a few here who chose radiation seeds who no longer post because they feel their choice of treatment have been looked down on by just a few, and they grew tire of rationalizing it at times over and over. That comes out primarily with the how can you not want that post surgery pathology report??? type posts. But as I said by just a few, This is primarily a surgery site and has been the last 18 months I've been here.
Posted 3/13/2009 2:31 AM (GMT 0)

Realziggy:

All I'm saying re Dave (stxdave) is that I believe he is entitled to his opinion and to be treated respectfully, even if you disagree with his logic.  That's my opinion.

I understand that most of the guys on this site have had surgery.  Having said that, I did not choose surgery and have never felt looked down upon because I chose another path.  In fact...quite the contrary...as several of the surgery patients (David in SC for example) have requested me to weigh in on seeds when newbies have inquired about options.  So, I'm sorry if your experience here has been one where you felt that people wanted you to fail.  My experience here has been just the opposite and I have been treated with nothing but respect and support...despite my not choosing surgery.

And, to reiterate my earlier sentiment, I sincerely hope your treatment is totally successful.

Tudpock

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