Active Surveillance Update - 99.9 Percent Will not Die from Prostate Cancer

Let’s continue to work together to advocate for more PC patient knowledge and education, which leads to more patient empowerment, better outcomes and higher patient satisfaction with their own outcome. The three FUNDAMENTALS for AS listed earlier in this thread are a great start, but there may be more.

In re-reading through this thread again, one important, fundamental aspect which seems to escape many of the commenters is just how large the population of men is who may be candidates for Active Surveillance. Some comments implied that it might be a small number of newly diagnosed men who are eligible for AS. The correct answer is that no matter how you slice it, it is a huge number of men. Let’s look at some data…

In the recently published work “Gleason Grading of Prostate Cancer,” the authors looked at contemporary prevalence of primary and secondary Gleason grades—a contemporary view is important because the original Gleason classifications have evolved. 77.3% of newly diagnosed cases had a primary Gleason grade of 3. Here’s the breakdown:
3+2: 0.7%
3+3: 40.3%
3+4: 32.5%
3+5: 3.8%
Total with primary Gleason grade of 3: 77.3%

The Johns Hopkins AS program is recognized as probably the most restrictive, and initially only accepted 3+3 cases, so the most restrictive program might only accept up to about 40% of all newly diagnosed men based on this data.

Most of the other major programs are less restrictive than Johns Hopkins and include a subset of the 3+4 favorable intermediate risk men. We see from the data above, looking only at Gleason scoring, that might be as high as 73.5% of all newly diagnosed men (based on 0.7% + 40.3% + 32.5%). HOWEVER, men in the favorable intermediate risk category have more restrictive criteria in the some of the other case characteristics which might exclude them. An article in the PC Infolink today discusses a new report published this week which pegs the upper threshold of all newly diagnosed men at 67% being eligible for the less restrictive AS programs. (Read the article for your own complete understanding: http://prostatecancerinfolink.net/2015/09/03/21890/)

So, depending on the “restrictiveness” of the AS program, somewhere roughly between about 40% and 67% of all newly diagnosed are eligible for Active Surveillance. That’s a huge number, and it’s clearly the largest single categorization of newly diagnosed men.

So, I would propose this summary statement to be added, along with the three previously documented “FUNDAMENTALS” in this thread, to the “Newly diagnosed…” thread:

AS FUNDAMENTAL #4: A huge percentage of newly diagnosed men are suitable for Active Surveillance as a first-line management strategy. Some AS programs are more restrictive than others, and there is currently no universally accepted formal protocol for AS entry, monitoring, or exit. Clinicians individually tailor a program of care to each individual case but based on common foundations. Using contemporary data of newly diagnosed cases in the US, somewhere between 40% and 67% of new PC cases are likely eligible for Active Surveillance, based on more and less restrictive program criteria.


Anyone else want to suggest another “AS FUNDAMENTAL” which might also benefit HW/PC newcomers?

Post Edited (JackH) : 9/3/2015 12:27:52 PM (GMT-6)

F8 said...
it's the doctors who need the educating, imo. empowering the patient sounds great but will have limited success.

ed

You are certainly entitled to your opinion about the limited value of patient knowledge, education and empowerment.

A lot of people here, myself included, feel that HW/PC can be "a powerful force of good" and a source of information from "experienced travelers" for a large number of men with PC, especially newly diagnosed men, because of the high traffic volume of newcomers. Doctors don't seem to come here (although there have been some who did come here in the past and would have been an invaluable resource but were unfortunately chased off). Fortunately, the professional medical societies are educating doctors about the value and appropriateness of AS in parallel...lots of new professional artifacts coming out in the last few years in support of AS.


But directly to your "opinion," I'll simply copy/paste one of my earlier comments in this thread:

JackH said...

Studies have shown that the men with PC who have both the best success and the highest satisfaction with their outcome are men who educate themselves about the disease and actively engage in the practice of shared decision making with their clinician. Your doctor is not going to (he/she shouldn’t) tell you what to do; while they may have their own conscious or un-conscious built-in bias, their role is to give you inputs and professional recommendations. As the JHU report shows, contemporary AS programs can successfully guide men to deferred treatment, when appropriate, and do that with extraordinarily high levels of success. Men who want to be completely uninvolved with their own care probably don’t make good AS candidates.


"We can easily forgive a child who is afraid of the dark; the real tragedy of life is when men are afraid of the light."
-Plato

Anyone got anything constructive to add to this newly published "FUNDAMENTAL?"

JackH,

Thank you so much for all that you have added to this discussion.

I was not surprised to see some blowback to the subject, as some PCa survivors, (in my humble opinion) have a bias against any treatment less severe than what they had to endure.

But, you have extended the lessons of the original article with your expositions of the applicability of AS to a very large patient population. Good work!

Recapping, and reordering…
Active Surveillance (AS) is frequently not well understood by the newly diagnosed. Here’s a couple of “AS FUNDAMENTALS” which will help kick-start your “patient education.”

ACTIVE SURVEILLANCE FUNDAMENTAL #1: AS is only for well-selected men diagnosed with PC. This is why “Step #1” for newly diagnosed men is to understand your risk category (see “Newly diagnosed…” thread). AS is not for men with high risk cases. Intermediate risk…maybe. This category has been split into two groups: 4+3 unfavorable intermediate risk cases, and 3+4 favorable intermediate risk cases, with other case characteristics also weighing-in. A number of AS programs have been including favorable intermediate risk cases. Low risk cases are the obvious candidates, and Johns Hopkins has had strict guidelines (although they have relaxed their AS criteria a couple years ago).

AS FUNDAMENTAL #2: Despite the limitation of being "well-selected" in #1, above, a huge percentage of newly diagnosed men are suitable for Active Surveillance as a first-line management strategy. Some AS programs are more restrictive than others, and there is currently no universally accepted formal protocol for AS entry, monitoring, or exit. Clinicians individually tailor a program of care to each individual case but based on common foundations. Using contemporary data of newly diagnosed cases in the US, somewhere between 40% and 67% of new PC cases are likely eligible for Active Surveillance, based on more and less restrictive program criteria.

AS FUNDAMENTAL #3: Some men who originally qualify for AS end up moving onward at a later date to a deferred treatment if signs indicate degradation in case characteristics. These men with deferred treatment are also “AS success stories!” (Please study and understand this PC Infolink article if you are confused by that statement: prostatecancerinfolink.net/2010/10/19/understanding-your-clinicians-mindset-about-active-surveillance/) The program worked for them, too, by showing them if and when treatment was appropriate. Complementary research has demonstrated that men on AS who move to deferred treatments have essentially the same outcome as those who sought immediate treatment.

AS FUNDAMENTAL #4: Ongoing monitoring is important to the continued success of AS programs and men enrolled in AS programs. Annual PSA blood tests are the norm. In the past, on-going AS cases have follow-up biopsies (after the 2nd, confirmatory biopsy) on an every 18-24 month basis (typically), depending on the program. In the current decade, mp-MRIs have been found to be superior to the old standard ultrasonic-guided needle biopsy, and most AS programs now at least intersperse mp-MRIs with needle biopsies.




Others?

Post Edited (JackH) : 9/3/2015 3:05:15 PM (GMT-6)

JacCan said...
Be careful how you interpret the John Hopkins AS study. If you just buy into the headlines it can be misleading. This was a well designed study conducted at John Hopkins by some of the finest clinicians in the world but the patient inclusion criteria, study design and exclusion criteria is not something that happens typically. AS may be an appropriate treatment for some but only when you entrust that your clinician will not miss the window of opportunity to re-classify your cancer as times pass by.

Don't be so quick to dismiss this post as "...ignorance from a newcomer". Firstly, we don't know it's not Ballintine Carter himself posting in annonimity. Secondly, I'm unsure it's a completely inaccurate post.


I think I read somewhere (I don't have the figures to post...so if someone knows the numbers...Please post them. ). But the VAST majority of PCa in this Nation isn't treated at "The Big Five" or even the "Big Ten" cancer institutions. The majority (by no small amount) are treated on Mainstreet, USA. Treated in community and state run and funded hospitals. In other words, most PCa is treated where the is no access to 3t mri technology or guided biopsy technology. But they still have AS protocols in place.

For example...The protocol I'm currently under requires...

1. One blind biopsy to establish eligibility.
2. No more than 25% of cores positive, no more than 50% of 3+3 in any core, PSA under 10 tested
Quarterly and 2 negative DRE's per year.
3. One more blind biopsy after 1 year. Then one blind biopsy every 3 years until the age of 80!


Would anyone here feel comfortable under this protocol? Granted...my urologist wants more info than than this and we talk as equals about what needs to be done in addition to these measures that enables both of us to be comfortable.


Bottom line...that JH study is a tightly controlled group by the best technicians in the land. It does need to be pointed out that (as JacCan does) this isn't necessarily representative of the results of the AS programs that the majority of PCa patients have access to in this country. It's the best of the best. It's not necessary absolute.

We (on this forum) tend to look at the "creme de la creme" of all things PCa. JacCan's "heads up" post is not entirely inappropriate. ..One man's opinion...fwiw.

And btw...The title to this thread is unambiguous and straightforward!! Lol...

island time,

The protocol you described for yourself seems appropriate (and common). And particularly appropriate given your point that this may not be through one of the world's leading programs...which is absolutely fine. The doctors at JHU are publishing reports in medical journals so that their peers everywhere can also learn from their work. Us laypersons learn from them, too.

I would wager that your protocol may "continuously improve" over time. mp-MRI is not in the plan now, but as they become increasingly available, and specialists become increasingly well-trained in their reading, this may work it's way into an alternating pattern with your 3-year biopsies. Maybe; just an educated guess.

Another tangential important point from your posting, island time, is that AS can be done anywhere! Not just at one of the major centers.

There is a recurring thread here at HW/PC that lists the currently available sites with mp-MRI systems, and also includes men's personal experiences there. The list is growing (albeit slowly).

Post Edited (JackH) : 9/3/2015 3:31:36 PM (GMT-6)

Lurkers, and many of us contribute for the benefit of newcomers who stream in on a steady daily basis.

I call it "paying it forward."

halbert said...
IT, I've seen that statistic also about the majority of RP's are done by low volume surgeons. The AS program I was offered sounds remarkably similar to the one you're on. I get your point exactly. The last time I tried to point out something similar in here, it did not go well.

I was going to say more, but my better angels are suggesting I stop right there.

My angels told me to go so as to delete it. I followed the is suggestion!

Although the majority of those who responded in this thread are pro AS, the fact remains that a clear majority of those who come here who are diagnosed with low risk disease (Gleason 6 and PSA < 10) choose a radical treatment over AS. As long as the urologists who are the first responders do not recommend AS, it is going to be very difficult for a person diagnosed with PCa to go against his doctor's advice, particularly when one's life is at risk. This is why the long range studies of AS coming out of both Johns Hopkins and Sunnybrook Hospital associated with the University of Toronto (headed by Laurence Klotz) are so important.  These studies are aimed at the professionals and are publicized at the major urology conferences. Eventually, the message inherent in these studies will hopefully trickle down to the urologist who practices outside of the major academic centers.

F8 said...
did I say lurkers were not important? I've been here long enough to know that most guys will have surgery because they are scared and they "just want it out". and their point of contact is a surgeon who will tell them if you do surgery first you can always do radiation later but not the other way around.

the guys here are thinking more rationally because most of us get educated after the fact.

I think it's great to make the information available but I still believe doctors need to be re-educated for there to be an impact.

ed

I am with you. How many times have I told new guys at G6 - find an AS program only to hear their panic attacks that they had "CANCER and are going die" or are told by their URO that it needs to come out and I have an opening next Thursday. Then the go off and have their prostate ripped out. How many times have I suggested AS only to get the reply, "I could never do that, it would drive me crazy!"

I try, in my own way to convince guys not to rush into radical treatment, but people have a nasty habit of making up their own minds and ignoring the facts. All too often we hear of doctors pressuring their patients into inappropriate treatments.

When you get the call that you have prostate cancer (or any cancer) rational thought isn't the first thing that happens. Sometimes it never happens.

Andrew

I think that Prat raised an important point about the psychological/emotional aspects. I don't know how many men don't do AS because they're not mentally equipped for it (or just consciously choose not to do it) versus how many don't do it because they just never realized it was an option. I think the former is very understandable, while the latter is a shame.

Michael_T said...
I think that Prat raised an important point about the psychological/emotional aspects. I don't know how many men don't do AS because they're not mentally equipped for it (or just consciously choose not to do it) versus how many don't do it because they just never realized it was an option. I think the former is very understandable, while the latter is a shame.

Totally agree with that last statement, so important to know the option exists, which I realize is the point that Jack is driving home.