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NIH statement on Active Survellience

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Posted 12/7/2011 10:04 PM (GMT 0)
The NIH has just released a statement from its conference on AS.

The whole text can be read at:

http://prostatecancerinfolink.net/2011/12/07/nih-panel-statement-on-active-surveillance-in-prostate-cancer/

Highlights are:

1. since 1987, the advent of psa screening, there has been a spike in PC detection, but a lack of increase in the PC death rate.

2. At 20 years follow up only 5% of men with low risk cancer die.

3. More than 63% of all PC is G6.

4. Only 10% of those eligable ever choose AS.

5. Early results from many studies indicate disease free survival rates that compare favorable to curative therapy.

6. No futher studies are needed to prove the effectiveness of AS on low risk patients with a life expectancy of <20 years.

7. More randomized clinical trials are necessary to determine effectiveness of AS for life expectancy > 20 years.

8. Strong consideration should be made to remove the anxiety provoking term "cancer" to low risk cancer. (This should make Casey very happy)

JohnT

Posted 12/7/2011 10:20 PM (GMT 0)
The NIH is just the latest on the growing list of distinguished experts/organizations to recognize the bigger picture of the relative harms/benefits.
Posted 12/8/2011 5:07 PM (GMT 0)
Golf,
What it is saying is that AS definately works for those that have a life expectancy <20 years and no futher trials are needed to prove this as it is already well proven by existing data.
It says that we do not yet have data beyond 20 years and more data is needed on the very long term effectiveness of AS.
Posted 12/8/2011 5:08 PM (GMT 0)
Golf,
What it is saying is that AS definately works for those that have a life expectancy <20 years and no futher trials are needed to prove this as it is already well proven by existing data.
It says that we do not yet have data beyond 20 years and more data is needed on the very long term effectiveness of AS.
Posted 12/8/2011 7:20 PM (GMT 0)
JohnT,

First, I do not doubt the NIH conclusion. The challenge is to convince us that AS is OK for some and that we can deal with the anxiety and uncertainty.

Second, if treatment cost comes down by an order of magnitude, and side effects are minimal, would NIH still call for AS? Perhaps, that is where the healthcare system should work towards.

Finally, hope springs eternal, often time even a 75 year old believes (or hope) he has >20 years life expectancy. :-)

Not trying to argue, just some thoughts.
Posted 12/8/2011 9:40 PM (GMT 0)
Read the 26 page report. Here are the consensus conclusions:

Conclusions
Prostate cancer screening with PSA testing has identified many men with low-risk disease. Because of the very favorable prognosis of low-risk prostate cancer, strong consideration should be given to removing the anxiety-provoking term “cancer” for this condition. Treatment of low-risk prostate cancer patients with radical prostatectomy or radiation therapy leads to side effects such as impotence and incontinence. Active surveillance has emerged as a viable option that should be offered to low-risk patients. However, there are many unanswered questions about active surveillance strategies and prostate cancer. These include:

Consensus on the best candidates for active surveillance

The optimal protocol for active surveillance and the potential for individualization based on clinical or patient-related factors


Optimal ways to communicate the option of active surveillance to patients


Methods to assist patient decision making


Reasons for acceptance or rejection of active surveillance as a treatment strategy


Short- and long-term outcomes of active surveillance.


Well-designed studies to address these questions and others raised in this report represent an important health research priority. Qualitative, observational, and interventional research designs are needed. Due to the paucity of evidence about this important public health problem, all patients being considered for active surveillance should be offered participation in multicenter research studies.

This is a work in process report. Unless those treating PCa fall in line, progress will be slow...

RalphV
Posted 12/8/2011 10:00 PM (GMT 0)
I agree that continued research and improvement in AS (and in surgical technique, and RT processes, and cyberknife treatment) is needed. Thank goodness, for example, for the continuous improvement in surgical technique...

In specific regard to AS research opportunities, it may now be time to consider a study to explore the potential of AS in the management of men with lower risk forms of intermediate-risk PC (3+4 but a low percent of pattern 4, PSA<10, no more than 3 cores positive). [Not an idea originating by Casey, by the way.]
Posted 12/8/2011 11:04 PM (GMT 0)

Casey59 said...
I agree that continued research and improvement in AS (and in surgical technique, and RT processes, and cyberknife treatment) is needed. Thank goodness, for example, for the continuous improvement in surgical technique...

In specific regard to AS research opportunities, it may now be time to consider a study to explore the potential of AS in the management of men with lower risk forms of intermediate-risk PC (3+4 but a low percent of pattern 4, PSA<10, no more than 3 cores positive). [Not an idea originating by Casey, by the way.]

Casey,
No, no this is about AS and not any other form of research needed. You have the tendency of altering the thread with "side shows" The consensus is that AS at this point in time needs a few more answers before more potentially qualified candidates could jump on the bandwagon.

Hey, why not call PC (3+4) "weird cells v2.0"...No more cancer, that should help!
RalphV
Posted 12/9/2011 12:50 AM (GMT 0)
Ralph, I'm not sure why you felt the need to respond to Casey's post with some smart-a** comments.  I understand that you and others may not agree with some of Casey's suggestions and that's fine.  But how about showing some simple respect in your responses?

Tudpock (Jim)

Posted 12/9/2011 8:46 PM (GMT 0)
Hi
It was suggested to me two years ago that I have AS, which seemed the answer to my problem for a while, however after two years and a second biopsy the doctors decided that I had a higher grade cancer than was first tested and that I needed treatment asap.
Which was a bit of a shock, I am waiting my pathology results after Robotic surgery....

So if I could travel back in time two years I would not have taken the AS option and would have had it all removed as the prognosis then was favourable.

Therefore I would question the value of AS as a form of non treatment because it all hinges upon a good biopsy analysis carried out by a competent technician.

Food for thought.
Posted 12/9/2011 9:00 PM (GMT 0)
To say that this report says that AS definitely works is not a correct interpretation of the report. The report says for many it can be a good option but it does not say anything definitely.

Tony
Posted 12/9/2011 10:06 PM (GMT 0)
I think Mike's assessment on the AS "summit" is a much better assessment than any here:

prostatecancerinfolink.net/2011/12/08/whats-next-on-the-active-surveillance-front/

This was posted today...

Tony
Posted 12/10/2011 1:07 AM (GMT 0)
"Prostate cancer screening with PSA testing has identified many men with low-risk disease. Because of the very favorable prognosis of low-risk prostate cancer, strong consideration should be given to removing the anxiety-provoking term “cancer” for this condition."

No definition is made of "low-risk" anywhere in the report and therefore the statement can't be challenged and is therefore meaningless.

The report is shot full of holes and it's hard not to escape concluding it's a report supporting the view it was meant to support. That should not be seen as strange as many "statistics" are gathered to make a particular preordained point. It certainly looks self serving to me.

I can agree with large chunks of it but it seems to draw an overall conclusion that treatment and diagnosis is futile without saying it in so many words. It seems to imply that.

Swinging the stats can easily be done like this...

A good friend of mine dies several months ago at age 67 of secondary bone cancer following unsuccessful prostatectomy 12 years earlier. Is his "statistic" in the column headed "surgery fails to improve morbidity"? Technically that would be the correct column but all the while the statistic should point to the inference that early diagnosis would probably have saved this man's life.

I hope I have made my point about how figures seem to be skewed "honestly". I think there are great portions of this report which are praiseworthy like "cancer" being a word of worry, the need for collection of information, and especially the need to identify "low risk" condition to prevent over-treatment.

Post Edited (KickintheButt) : 12/9/2011 6:16:38 PM (GMT-7)
Posted 12/10/2011 1:07 AM (GMT 0)
The report states:
"For low risk prostate cancer patients with a life expectancy <20 years, the PC mortality rate is so low that we do not recommend a randomized clinical trial comparing an observational approach to immediate treatment with curative intent"
I don't know how others would interpret this statement, but to me it means that the panel feels that there is enough data on AS for those< 20 years life expectancy to recommend this approach for those with low risk with < 20 years life expectancy without any futher studies.
Which means that the panel feels it works for this cohort of patients.
Posted 12/10/2011 2:57 AM (GMT 0)
"3. More than 63% of all PC is G6."

Many other statistical databases dispute this figure..They all say Gleason 6 accounts for 40-45% of PC diagnosed..I would be interested in how they arrived at this figure...
Posted 12/10/2011 3:30 AM (GMT 0)
Fairwind I agree with that statistic from other things I've read. 63% are G6 at DX...The keywords are "at Dx"...BUT....Keep in mind that 23% of these men would be regraded after prostatectomy if they chose RP to get those results. This would align with other documents that I saw that show a lower percentage after RP.

John,
I agree it works generally but I know of cases that it didn't work well, so using the term "definitely" I think is misleading. We have to be careful in saying things that indicate to guys that it always works in all cases or that all G6 cases should take this rout when in fact the NIH also found that there are limits and parameters as to who should be on AS.

We're seeing more and more men going this rout. dick1's case is not an uncommon occurrence in the men I see initially choosing AS. I look forward to seeing even more men going this rout. Eventually however, we may have a significant number of men refusing treatment for their disease based on heresay and they won't be doing an adequate job monitoring the disease. The key to AS is the "active" part of it. If they see a change that is significant they should consider quitting the program and making active therapy decisions.

Tony
Posted 12/10/2011 9:53 AM (GMT 0)
the other critical point is age. With a life expectancy of less than 20 years it automatically rules out us young guys. Far too often age is not included in these discussions.

Also, far too often some people make blanket statements about side effects with those who in their mind are over treated. So many of us have minimal if any physical side effects at all. More and more of us as we catch this thing early and act. That needs to be honestly included when attempts of fear about SE are spread.

Another point hat should be respected is that of choice. Just as there are some men who fear surgery and won't go down that road, there are many men who fear not having surgery when they get cancer for multiple reasons including the emotional inability to not do something about it. I know that even with a gleason 6 I would have removed my prostate because the thought of risking more aggressive growth and detailed monitoring with biopsies, scans etc would have been too much for me to handle. That educated choice men make needs to be taken into consideration.
Posted 12/10/2011 3:23 PM (GMT 0)
Tony,
I think we are generaly in agreement, but are splitting words. I know of cases in which every primary treatment didn't work and there are many on the board who can attest to that. We don't go around saying that a treatment doesn't work if 100% of the men don't achieve a favorable result. AS works about 65% of the time for those eligable. Surgery works about 85% of the time for those that are low risk and about 65% for those that are not low risk. These are pretty lousy numbers and no one is saying that surgery doesn't work. Its the glass half filled half empty argument, It's all about your viewpoint.
Posted 12/10/2011 4:18 PM (GMT 0)
It seems to me that those who strongly encourage AS tend to neglect comments such as those posted by "Dick1" in this thread. 

No one has had a word to say in response to his predicament.

It seems to be a characteristic of the human mind that we sign on to certain beliefs and then begin ignoring everything that challenges those beliefs.  Once we decide, for instance, that AS is the proper route for those diagnosed with "indolent" Gleason 6 prostate cancer (or whatever we choose to call it, if not "cancer") we just write off guys like Dick1 who now find themselves having to deal with a more advanced case of prostate cancer, which could have been taken care of two years prior, probably with fewer side effects, and also probably with less chance of it having spread.

In my year and a half on this forum, I've seen more than a few people report that their "Gleason 6" cancer turned out to be something significantly more serious.  The thought that my "Gleason 6" may actually be Gleason 7 having its malicious way within my body for an extra year or two would give me very little comfort.

Obviously AS is a viable option in many cases, but there are certainly exceptions. 

So, can anyone venture a guess as to how many men would annually prove to be exceptions to the rule? 

 

Post Edited (clocknut) : 12/10/2011 9:36:05 AM (GMT-7)

Posted 12/10/2011 6:56 PM (GMT 0)

clocknut said...
It seems to me that those who strongly encourage AS tend to neglect comments such as those posted by "Dick1" in this thread. 

No one has had a word to say in response to his predicament.

clocknut, your highlight a "predicament" we face whenever we have newbies join HW...this topic has already been well covered in previous threads.

Bottom line, Dick1's case was likely an AS success.  AS is, by one definition, "a strategy of close monitoring of newly diagnosed patients with serial prostate-specific antigen measurements, digital rectal examinations, and biopsies, with treatment at disease progression or patient choice."  Dick1 closely monitored (hopefully, it was closely...he didn't specify) his disease, and at the first indication of possible progression he chose an appropriate deferred treatment.

Read-up on AS success HERE, in a prior thread posted by JohnT.

Posted 12/10/2011 7:15 PM (GMT 0)
Casey,
I would agree more with your statement than John's. Though I understand John's point. I think we are in general agreement too. But the "mincing" of words is interpreting the statement in question that it says "AS Definitely Works". As we review these documents and information, I think it's important to not add our own "spins". Is Dick1's case a likely successful use of AS or could he have missed an opportunity for a local solution? Both questions could be true. Both could be false, too. It is more likely that he will be fine, but it isn't set in stone enough to use the term "definitely".

Part of our ability to make educated decisions will depend on our ability to balance the information and the pro's and con's of that information. Dick1, has expressed regret that he didn't act immediately. Some might say then that his early decision to go on AS only to find out later that his initial biopsy mis-staged the disease or mis-graded the disease ~ was not successful in giving him peace of mind.

@Dick1. I think John and Casey are right in that you likely will not have any consequences by first choosing AS. You should never look back and question your decisions but rather always play things where they lie.

Tony

Post Edited (TC-LasVegas) : 12/10/2011 12:18:52 PM (GMT-7)

Posted 12/10/2011 9:23 PM (GMT 0)
Clock,
No one is disregarding Dick's post. As has been posted many times all data points to the fact that about 30% of those qualified for AS will progress and progression is most always identified within 3 years. Also the data reflects that treatment after progression has similar results to immediate treatment.
No one has ever stated that anyone going on AS will never progress, or that any low risk patient treated immediatiely will never have a reoccurrance. The chance of reoccurrance after surgery for a low risk patient is 15%. There are only probabilities and no 100% garantees for any treatment or non treatment.
The expected probability of someone on AS progressing is 30%, thus we should not be surprised when someone progresses, but on the flip side there is a 70% chance that he will never need treatment for at least another 12 years or perhaps forever. These are good odds when weighed against the 50% ED rate, the 11% incontinence rates and 15% chance of surgical failure.
There is also the trade off of getting treated while you are still healthy vs getting treated later when there may be some major advances in treatment technology as the last 10 years have provided us in radiology and drugs. The additional years of poor QOL due treatment has to also be factored into the decision vs delaying treatment.
For every patient that has progressed on AS there are two patients with the same stats that will have ED, incontinance or a reoccurrance because of immediate treatment that could have been safely deferred for many years.
It's all about managing risk and one's tolarance to risk, and you can't manage risk if you do not have the information on all the risk factors or simply only look at one side of the risk balance sheet. For me the risk of treatment far out weigh the risks of waiting. For others going through the same process it may be different as they may be willing to assume a much greater probability of a poor QOL for a perceived small increase in survival.
JT
Posted 12/11/2011 6:13 PM (GMT 0)
It always basically comes down to. QOL issues over just possible added longevity. Also add in the fact one remains eligible for major medical breakthroughs while on AS.

Thus it depends on ones priorities. I always weighed mine more toward QOL. I never wanted to wake up recovering from major surgery and possibly living my life from them on as an elderly man. I'll gladly risk a few years of old age later to prolong my life now as an active middle aged man. Then again I admit to being happily divorced so I don't have anywhere near the family pressures to survive at all costs. Besides knowing what I know now i feel I'll be dying of something else before Pca kills me, and that would've likely been true if I had just done AS. But in 2007 that didn't seem like a viable option. Those were the GET IT OUT OF ME!!! to the max days here.

People thought I was nuts volunteering for TFT back then , but that's another story.
Posted 12/12/2011 1:35 AM (GMT 0)
Back in the 90's we called it Watchful Waiting. Some of us called it Wishful Waiting.

Statistics are a lot of fun until you become one.
Posted 12/12/2011 3:23 AM (GMT 0)

Jimmie640 said...
Back in the 90's we called it Watchful Waiting. Some of us called it Wishful Waiting.

Statistics are a lot of fun until you become one.



I have been reading this discussion for several days. This may be the best point yet.
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