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PC: GUIDELINES for who needs treatment, who does not.

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JackH
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Posted 8/15/2014 7:45 AM (GMT -7)
1-The men and women at posting at HealingWell/PC are not amongst the world's recognized PC experts.  [edited] 2-One of the best ways, therefore, that we can help support each other, and the newcomers who enter our site on a daily basis, is to share the statistical results, summaries and publications of the professionals who are the recognized experts in the profession.   3-When we work together to push this valuable information out to the HW site, others benefit.   4-One of the most valuable tools—and it is intended to be a tool—for men newly diagnosed with PC is the NCCN * Prostate Cancer Guidelines for Patients ( LINK ).   5-The NCCN experts state that the “risk group” be used as the “foundation to start talking about treatment options.”   6-The “risk group” (high-, intermediate-, low- and very low-risk) is based solely on the set of pre -treatment case characteristics   7-Later in this thread, or perhaps in another thread, I would welcome others to comment about the intermediate-risk and high-risk NCCN recommendations.   8-Actually, the fact is that many HW threads already exist for intermediate- and high-risk cases.   9-In fact, the vast majority of PC research dollars are spent on testing & evaluating the lift-prolonging targeted treatments primarily for high-risk cases and first-line surgical and radiotherapy treatments primarily for intermediate-risk cases.   10-Given this backdrop, I feel that the low-risk cases are the most overlooked set of men, yet they comprise the largest single sub-category of the newly diagnosed.   11-As a result of the circumstances described above, a significant percentage of the low-risk men have suffered the consequences of what we recognize today as PC “overtreatment.”   12-Overtreatment occurs when a man elects an aggressive treatment for a condition which, if left alone, monitored and unchanged, would not otherwise affect his longevity.   13-Aggressive PC treatments result in side effects for all men(sometimes called "harms," especially in the cases of overtreatment), and severe side effects in a sub-set of men.   14-Overtreatment is a concept only applicable to men with “favorable-risk” cases, which is one of the key reasons that a proposal to change the name of “favorable-risk” cases has gained momentum in the profession and is a frequent topic of discussion at the applicable scientific gatherings of the industry leaders.   15-Most estimates are that over a million men living today in the US have been overtreated for PC; some estimates approach 2 million.   16-It should be noted that these statistics include all men who may have had full understanding (or any degree of less than full understanding) in advance that aggressive treatment for low-risk PC was not going to alter their longevity, and that any choice on their part to undergo aggressive treatments was therefore “elective.”   17-From the profession’s big picture perspective on counting the statistics, it matters not whether the patient choose to be overtreated; only what their case characteristics were.                    18-One of the most misunderstood aspects of the NCCN guidelines for PC is that Active Surveillance is one of the recommendations for low-risk men of ALL ages; and in fact AS is absolutely the ONLY recommendation for men in the very low-risk category with up to 20-years additional life expectancy.     20-Recognizing that low-risk (including very low-risk) cases are the most common of newly diagnosed men, patient forums like HW can be a powerful force in helping to reduce overtreatment.   21-Overtreatment will not likely be completely eliminated because some men will likely continue to “elect” an aggressive treatment with full knowledge of the impact to their longevity, but by working together we can help some men avoid the possible “treatment regret” which we sometimes see on the pages of HW.     * 22-NCCN is the National Comprehensive Cancer Network, a not-for-profit alliance of 25 of the world’s leading cancer centers dedicated to improving the quality, efficiency and effectiveness of care for patients with cancer.   23-Clinical Practice guidelines, the core resource published by NCCN, are the recognized standard for clinical policy in cancer care, and are the most thorough and most frequently updated clinical practice guidelines available.   24-Clinical practice guidelines are developed by a select group of specialists in each field to explain a disease and determine the best way to treat a patient, depending on their diagnosis, disease stage, and other factors.   25-NCCN also publishes an easy-to-understand guideline for the general public to help patients with cancer talk with their physician about their care.   I have taken additional time to number each and every one of the 25 sentences in this posting.   Please do feel free to be quite specific in raising any question or value-added comment.       Post Edited (JackH) : 8/20/2014 3:29:49 PM (GMT-6)
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davidg
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Posted 8/15/2014 8:31 AM (GMT -7)
wow, you are devoted to this, aren't you?

I don't think the purpose of this site is to tell men if they are supposed to be treated or not.

(Phrase deleted)

Post Edited By Moderator (Tudpock18) : 8/15/2014 10:57:05 AM (GMT-6)

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JackH
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Posted 8/15/2014 8:37 AM (GMT -7)

davidg said...
I don't think the purpose of this site is to tell men if they are supposed to be treated or not.

Kindly refer to sentences 2 and 3.

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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25440
Posted 8/15/2014 8:40 AM (GMT -7)
I fully agree with your #18, this is how it should be in my opinion. Men in that group, regardless of their personal desire, or if fear/panic are the underlying issue, should only be offered AS. This alone would reduce health care costs by millions of dollars per year, and spare this segment of men a lot of potential harm and grief associated with invasive treatments that they don't even need.
Age: 61, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries
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JackH
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Posts : 2037
Posted 8/15/2014 8:46 AM (GMT -7)
Thanks for your comment...

Purgatory said...
I fully agree with your #18,

...but you should note that you are not agreeing with "my" point in sentence 18...this is one of the important points of the NCCN Prostate Cancer Guidelines.

Sentence 18 DID, however, include an element of my own personal opinion...that this is one of the most misunderstood aspects of the Guideline.  What do you think about this opinion?

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F8
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Posted 8/15/2014 9:03 AM (GMT -7)
(sentence deleted)
ed

Post Edited By Moderator (Tudpock18) : 8/15/2014 10:57:40 AM (GMT-6)

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davidg
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Posted 8/15/2014 9:16 AM (GMT -7)
Phrase deleted

Perhaps neither of us is good for the spirit of this board and for newbies and recently treated men seeking support.

You can inundate the forum with AS noise and spam, and I could do the same with the thousands of articles out there (see below), including academic ones, that point out the dangers of AS.

What good does that do to folks coming here for peer to peer support? Yours is a mission, a crusade. It's a shame.

www.foxnews.com/health/2014/04/11/inaccuracies-in-prostate-cancer-tests-cast-doubts-on-active-surveillance/


"Prostate cancer in some men is being allowed to progress to a dangerous stage because tests are not accurate enough, researchers suggest.

A study found more than half of a group of men whose tumors were initially classified as slow-growing and confined turned out to have a more serious form of the disease.

The findings, published in the British Journal Of Cancer, suggest that men are being given false hope by tests that underestimate the aggressiveness of their disease."


"Our results show that the severity of up to half of men's prostate cancers may be underestimated when relying on tests before they have surgery. Whilst active surveillance would seem to be a safe approach for some men, nearly a third will end up needing surgery or radiotherapy within five years."

Post Edited By Moderator (Tudpock18) : 8/15/2014 11:10:06 AM (GMT-6)

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RCS
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Posted 8/15/2014 9:27 AM (GMT -7)
Jack,

I feel the booklet you link to is excellent and guys newly diagnosed with PCa should be referred to it.

My read on table 5.1 (refer to your sentence #18) is that guys who are very low risk, and have a life expectancy of 20 years or more, should (can?) consider AS, Radiation or surgery .... ie. AS is not the only option.
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JackH
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Posted 8/15/2014 9:39 AM (GMT -7)

Great comments, davidg.  These facts are all part of the broad NCCN considerations taken in advance of publishing the most recent PC Guidelines.  [Personal note:  I prefer to base my decisions and knowledge about PC to come from sources like the NCCN, not Fox News…but that’s just me.]

 

The 1/3 of men on AS who do later move to treatment are hallmarks of success of the program, in addition to the 2/3 who don’t need to.  As others have said previously, it’s a win-win situation.  Those who need treatment, get treatment; those who don’t, don’t.

 

Another consideration is that some cases go up a notch, other cases go down a notch compared to the pre-treatment assessment.  Yet another consideration the NCCN understands is that there is a small number of cases which initially present as low-risk for whom no treatment is beneficial.  However, despite these, the percentage of initially low-risk men who eventually die from PC is the same whether they pursue aggressive treatment or not.  THIS POINT BEARS REPEATING, because it speaks directly to the quotes in davidg’s most recent reply:  the percentage of initially low-risk men who eventually die from PC is the same whether they pursue aggressive treatment or not.  For about 1.5% of initially low-risk men, there is simply no treatment cure. 

 

 

 

 

 

 

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Tudpock18
Forum Moderator
Joined : Sep 2008
Posts : 4598
Posted 8/15/2014 9:42 AM (GMT -7)
Locked temporarily until the mods have a chance to edit appropriately. Sorry guys, it will be unlocked shortly. In the meantime please play nice.

Thanks, Jim
Forum Moderator-Prostate Cancer. Age 62 (67 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4/5 yr: .2, 6 yr: .1. My docs are "delighted"! My journey:
https://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
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Tudpock18
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Joined : Sep 2008
Posts : 4598
Posted 8/15/2014 10:00 AM (GMT -7)
I have made some slight edits and unlocked the thread.

Guys, c'mon. Play nice. It is possible to disagree without being disagreeable. If you have counter points to someone's position feel free to make them but PLEASE do so in a respectable manner.

Thank you.

Jim
Forum Moderator-Prostate Cancer. Age 62 (67 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Everything continues to function normally. PSA: 6 mo: 1.4, 1 yr: 1.0, 2 yr: .8, 3 yr: .5, 4/5 yr: .2, 6 yr: .1. My docs are "delighted"! My journey:
https://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1
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JackH
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Joined : Oct 2013
Posts : 2037
Posted 8/15/2014 10:10 AM (GMT -7)
RCS, yes agreed.  I'm going to modify the sentence above to read:  18-One of the most misunderstood aspects of the NCCN guideline for PC is that Active Surveillance is one of the recommendations for low-risk men of ALL ages; and in fact AS is absolutely the ONLY recommendation for men in the very low-risk category with up to 20 years additional life expectancy.   Sentence 19 is no longer relevant in light of these changes.   Thank you for constructive feedback!
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Tony Crispino
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Joined : Dec 2006
Posts : 8129
Posted 8/15/2014 10:27 AM (GMT -7)
Guys I also have the NCCN Physician's guidelines at my website. It's a highly technical read but it is a fascinating read:

advancedpcatalk.freeforums.net/thread/81/new-2014-nccn-guidelines

I had to get special permission from the NCCN to post it at my website. You cannot get this one at the NCCN as it is not a webpage it is a document. To retrieve it from my site you have to log in. I do not allow document retrieval without the login. Again I have permission to distribute this.

Also in my link here is the AUA physicians guidelines. NCCN is way better but it's also a 2014 document where the AUA document is a 2011 document (It's actually a 2007 that was revised in 2011). I have been selected to serve on the 2015 guidelines panel for the AUA as a patient advocate and cannot comment on those meetings aw I am under NDA. Dr. Ian Thompson, the chair of the 2007, 2011 AUA panel is a friend and he will be doing a webinar with me later this year. I'll make sure that link gets posted here. The topic ~ Prostate Cancer Guidelines and why they are disparate!

Have fun with the read guys. These are great documents
BioSketch tinyurl.com/mw36q72
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John T
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Posted 8/15/2014 10:28 AM (GMT -7)
The real purpose of AS is missing. The purpose of AS is to differentiate men who need treatment from those that don't. AS is the only strategy that does this for low risk men. If AS is monitored by psa and biopsies alone, as was done in the studies that davidg referred to there is some risk. When monitored with scans, MP-MRI or CDU the risk drops to practically zero. Approximately 70% of those embarking on AS will never have to be treated and the men whose cancer shows progression can be treated with similar results as immediate treatment. Scholz's article points out the importance of using these scans in both determining those eligible for AS and as a monitoring method for those who choose this option.
The MP-MRI has only been in widespread use for the last 2 or three years and has proven to be a very important tool in this fight, having the ability to identify aggressive cancers or cancers that are progressing. We have an effective tool that many doctors are still not using in initial staging or monitoring. This is the real crime. If patients could see the scans and the doctor fully explains the results of the scans to the patients and how they would be monitored using scans we would see a greater use of the AS option. They can also be used to determine those eligible for surgery and those whose cancer is not contained or whose tumors when removed would cause impotence or incontinence and give them other more viable options for treatment.
What's wrong with advocating patients and doctors use available technology to better determine their status before choosing a treatment? Isn't this what this forum and others are all about, helping patients make the best possible treatment decision based on their disease status? Why anyone would be against that is beyond my comprehension. Why is a technology that can eliminate 750,000 unnecessary biopsies a year be dismissed? Why would a technology that can save hundreds of thousands of men from a life of impotence and incontinence be dismissed as misguided advocacy?
No one is advocating that men who truly need treatment avoid treatment. The advocacy is that in the age of psa testing many men will be diagnosed with a cancer that in a previous age would have gone undetected until their death from other causes. We now have a tool that can identify these. Why shouldn't every patient have the right to know that this technology exists?
68 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, 4 weeks of urinary frequency and urgency; no side affects since then. 4 years of psa's all at 0.1.
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medved
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Posted 8/15/2014 10:34 AM (GMT -7)
Jack's point about some people well-informed "electing" to be "over-treated" is an interesting one. What I mean by that is there could be a guy who, objectively, most experts would say should do AS. But he personally cannot tolerate AS, psychologically. It would bother him every day and interfere with his enjoyment of life. Is his treatment really unnecessary, or "over treatment"? Maybe in his case, it is not over-treatment. He needs to be treated -- not from a (pure) urology point of view, but from a psychology point of view.
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Tony Crispino
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Posted 8/15/2014 10:35 AM (GMT -7)
John there are two purposes for active surveillance. First the one you mention but also to delay therapy until absolutely necessary. The will prolong quality of life in men not ready to take treatment side effect risks. Per the Klotz data, the average delay time is about 6 years for low risk men. With that delay there were no deaths and no adverse signs in their disease after RP from a control group that was treated immediately.

But again AS allows men to safely monitor as opposed to aggressively treat low risk PCa. And usually after the first year there is usually good signs that it can be monitored for many years.

As far as preventing biopsies with imaging that is a different topic.
BioSketch tinyurl.com/mw36q72
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JackH
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Posted 8/15/2014 10:59 AM (GMT -7)
Medved, thanks for your comments.

Beyond sentences 16 and 17, above, your comment seems to speak most directly to another statistic which reveals that close to 80% of men newly diagnosed with low risk PC elect to undergo immediate aggressive treatment.

The statistics on overtreatment from the physician's perspective do not consider this.

Post Edited (JackH) : 8/15/2014 12:02:00 PM (GMT-6)

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RCS
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Posted 8/15/2014 11:01 AM (GMT -7)
Medved,

Good point on well informed guys choosing to over treat. I have often chosen to over treat (pulmonary embolism, flu, common cold, etc.) in order to avoid a recurrence.

When I think about it, over treatment of most all ailments is the standard in the U.S. Maybe not in developing countries .... but then they do not have access to our technologies .... I am guessing over treatment of PCa is not an issue for them. The NCCN guidelines are probably only an academic exercise for most of the world.
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JackH
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Posted 8/15/2014 11:07 AM (GMT -7)
Over treating a common cold probably won't impact your longevity either, but you should weigh the consequential side effects.

To refer to and NCCN guidelines as an academic exercise understates their power, and certainly there intents. It is my personal experience that oncologists carry them around in their lab coats when meeting with patients. But people elect to disregard recommendations all the time for their own reasons. Nothing wrong with that, as long as they know what the very best doctor recommendations are.

Post Edited (JackH) : 8/15/2014 12:13:24 PM (GMT-6)

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RCS
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Posted 8/15/2014 11:14 AM (GMT -7)
Jack,

If you don't have access to a doctor, let alone an imaging machine, to track your AS what good are the guidelines? I do think this is the case in much of rural South America, Africa, India, and Asia. Indeed, it is my understanding that the imaging technology discussed in this thread is available in only a few places in the U.S.A.
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JackH
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Posted 8/15/2014 11:23 AM (GMT -7)
RCS, my understanding is that doctors from under developed countries around the world look at the NCCN guidelines as the very best practices possible, anywhere. They are probably unable to follow all the guidelines. I must admit I am somewhat unfamiliar with Third World medical practices.

I would also, somewhat, agree with your comment on the limited availability of advanced imaging equipment. It is definitely not available in every community Hospital. It is available in every one of the nations recognized comprehensive Cancer centers, and many other facilities. What is more limited, however, is the highest level of expertise in reading and interpreting the advanced imaging scans.
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RCS
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Posted 8/15/2014 11:45 AM (GMT -7)
Jack,
Thanks ..... Good guidelines.
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JackH
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Posted 8/15/2014 11:49 AM (GMT -7)
Thanks for your contribution, RCS


(also thanks to the moderators for getting this thread back on track.)
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Purgatory
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Posts : 25440
Posted 8/15/2014 11:56 AM (GMT -7)
I agree with #18, whether it be the actual guidelines, your opinion, or a mix of both. AS should be the only insurance paid option for those that meet fully the criteria in those circumstances. Take away an unneeded choice, and it becomes a win-win, even if the patient doesn't see the benefit at first.

If the patient, or doctor, or both, insist on an unneeded invasive treatment, then if they choose to pay out of pocket for it, let them do it and assume all associated risks.

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MsWorryWart
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Posted 8/15/2014 4:57 PM (GMT -7)

medved said...
Jack's point about some people well-informed "electing" to be "over-treated" is an interesting one. What I mean by that is there could be a guy who, objectively, most experts would say should do AS. But he personally cannot tolerate AS, psychologically. It would bother him every day and interfere with his enjoyment of life. Is his treatment really unnecessary, or "over treatment"? Maybe in his case, it is not over-treatment. He needs to be treated -- not from a (pure) urology point of view, but from a psychology point of view.

So, why not rush out and get a Lobotomy instead of a Radical Prostatectomy? smilewinkgrin

While this is said in jest, it does sort of have a point.
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