A systemic review of AS by Dr. Klotz

I completely agree with the thinking that it's as personal a decision as the disease itself......the decision & reasons for that decision are as varied as PC.

I was at 69 yrs old at DX...& initially I said 'AS for me '...then I thought about my family and financial etc, etc,. & a friend who had just had RP-Da VINCI...etc., ...I changed my mind   had the surgery 2 months later, & the post op showed it was almost to the point of Metastasis...

So, what the heck ...LUCKY ME...huh ?....Or other not just luck !!

Go Figur. !!

Folks I have been a snooper here and I thank you all for the wonderful caring and sharing I continue to see here. I said earlier in a PCAF (Prostate Cancer Advocates Forum) staff meeting that HW is still the very best triage site for all the newly diagnosed prostate cancer patients that use the web.

I am only breaking my silence briefly here but this discussion is important in many ways.

Ralph wrote and highlighted

"However, uncertainties persists concerning optimal patient selection and reliable progression criteria, as well as the long-term safety of AS. "

First my thoughts. I agree with this statement. I personally do not advocate AS to patients at all in as much as I advocate patient education about it. This is not my decision to make nor was it. More than anything else that concerns me a patient is mired and lured into decision making process before he has the complete set of considerations about a given approach to treatment and therapy. I feel that this is the best use of an active surveillance protocol and if it lasts the patients lifetime without issues then all the more better. But that's not my advocacy. The point Ralph outlines is on target with my point. We need better science around a lot of things in prostate cancer research and it's very clear that what Snuffy Myers says is correct in his books when he says that patients are stuck making decisions all too often with inadequate data.

Just how does a patient make a decision when he does not have all the necessary information? We need more trials on AS. We need a lot more trials elsewhere as well. So I am now in the business of clinical trials and trying to help that effort. I hope and pray I can make a difference.

Tomorrow at 3:00pm Las Vegas time I join a panel discussion with Laurence Klotz. There are three others in that discussion. Much of this topic will be about active surveillance as is obvious. I will be asking Laurence also about comments by Pete Scardino he made public yesterday at ASCO. For those that do not know him he matters. In the comments he makes he states that times are changing and he feels that as many as 50% of newly clinical local disease should first be on active surveillance to better gauge the characteristics of his disease. I agree with that 50% but not just for that reason. A man stricken with clinically local prostate cancer has a benefit in his arsenal that all too often gets skipped over. He has time to get an education and make educated decisions no matter what the decision is.

Recently, I have been selected by the AUA to review and co-author the 2015 guidelines to managing clinically localized prostate cancer. Just a couple formalities in the way but it will be. For me tomorrows discussion is very important to understand more about the patient side of AS. I have heard Klotz speak many times. He is a bright guy. Anyone who may want to join that conversation must register and time is short. There will be a webcast after this event.

Thank you all for this soap box. May peace and love always find you. Stay well and stay healthy! But most of all stay positive!

Tony Crispino
Patient Advocate and Support group President

Affiliations and Memberships
SWOG
ASCO
AUA

Post Edited (Tony Crispino) : 3/19/2014 12:20:56 AM (GMT-6)

i listened to the show, a complete sales pitch for AS by those who profit from it and those who advocate for it for various reasons. Would have been nice to have some respected folks that have valid concerns about AS on the panel in order to give it at least a minimal amount of balance and, in my opinion, credibility. Specially given the fear mongering concerning treatment evident on the program. Seemed like the goal of the panel, according to the program, is to continue to push the AS agenda as aggressively as possible in order to get people to buy into it. Reminds me of cult movements.

Didn't hear anything I haven't heard here a million times now. Clinically insignificant disease, barbaric treatments and non acceptable side effects, greedy US doctors who like to cut and burn, OT resulting from fear of litigation, fear and hysteria/anxiety/fear upon diagnosis, reason winning out with acceptance of AS etc, etc, etc. This coming from a guy who profits from AS.

Like I said above, had this panel revolved on surgery by a surgeon and pro treatment panel or radiation by a radiologist and pro radiation panel it would have been met with the same exact skepticism.

When Klotz says 2/3 of patients never have problems, and only 10% have gleason score progression, he needs to be more specific about the average age of these 2/3 of people who never have problems.

He said says most young men followed 10-15 year (not enough btw) show they will have no problems and that they don't need treatment and never will. So he has no issue offering surveillance to the vast majority of young men in their 40s. This goes counter to what most experts in US say. He then of course talks about fear of SEs. He does not get into the personal reasons why men would want treatment at that age and he certainly ignores the fact that a significant amount of guys don't even have SEs or overcome them rather quickly.

One panelist asks "how do we get the message out" referring to AS for G6 guys. I don't know, but certainly not like this because they're preaching to the choir and probably failing to connect with the vast majority of men in the process.

Klotz then says it takes MARKETING to get this message across and that it's groups like the panel and it's members who have to spread the message. And there you have it in case you really needed a weatherman to tell you which way the wind blows.

His comments about AS being more popular in Canada than in America because of differences in character in America and Canada, because Canadian urologists are busier than US urologists is ridiculous. He says only 5% can't hack AS mentally but this number does not jive with other numbers quoted and floated around here (40%) and then he makes the silly generalization that those 5% are made up of socially isolated and inept loners or type A industry leaders who just take action in life.

I'm going to take a shower.

Post Edited (davidg) : 3/19/2014 8:45:59 PM (GMT-6)

Of course you do, Jim. You are pro AS and have historically agreed with Kotz's characterization of cut and burn US medical ethics.

The great irony of course, and it will take intellectually honest discourse to admit this, is how in th epast various people here have been accused of being shills for their surgeons or radiologists and how distasteful these practitioners are in their marketing gimmicks. Some went as far as accusing board member here of being directed to post here on behalf of their doctor.

In the interview, Klotz clearly states that in order to spread the word about AS "marketing" is required and it will only happen through the efforts of people like those on the panel going out and spreading the word. It's recruitment for a man who benefits from it.

"catching up" doesn't make it kosher, Jim. It it quacks like a duck it's a duck.

I disagree that that was an education about our disease. It was purely a promotional event. If it were educational the panel would have had people like Ralph on it who could at the very least ask Klotz some pertinent questions rather than simply pitching him some home run balls.

promote, AS, Jim. That's why he told the panel to go out and promote it in a marketing effort.

If the same thing had been done here with a surgeon like Dr. Patel for instance talking about the advantages of surgery, the gold standard, the inept Canadian attitude towards it, and the need for the panel to go out and market/promote his message you'd be all over it like, in fact, you have in the past.

If you look at the sources, one directly benefits from it and has an interest in promoting it, one panel member was a successful AS patient, and the others were all proponents/activists against ODOT and promotion of AS.

Their stated and clear goal is to get as many as 95% of G6 men on AS and even those G7s with less than 10% on cancer in the highest core. It's agenda driven activism and some are clearly profiting from it. You can mask it as "educational" in nature, but it's agenda driven and was a promotional event that people are being asked to go out and promote.

I'm for AS, my dad and I are going down that road and my grandpa was on it. But let's call this exactly what it is.

ps - and I pointed out specific things Klotz said that make little sense, like the fact that only 5% of eligible AS candidates can't do it mentally and that's because they're either anti-social loners with no support networks or type A personality industry leaders. No questions about how he could back up that claim when statistics show that 40% of AS candidates move on within 5 years. His comments about inherent ethical and personality differences between Canadians and Americans was also odd to say the least. He was applying geographical determinism to bolster his point. The whole hour had a lot of points that needed to be questioned but of course nobody on that panel would question them.

Post Edited (davidg) : 3/20/2014 10:56:32 AM (GMT-6)

Turp - no doubt. This is a peer to peer support group and our individual stories help other folks.

Although I knew about AS and WW because of my grandpa, I have certainly learned a lot more, specially about tests, from folks like John which in turn has helped me participate alongside my da don his journey.

I find that all very different than carefully coordinated and orchestrated promotional events that benefit certain people and/or fulfill their agenda driven motivations.

Depending on your point of view you will either see the presentation as davidg sees it or as Tud sees it. I saw at as Tud did, very informative. I would advise everyone to look at the presentation for themselves on the link Tud provided and judge for themselves.
The whole of marketing AS was in response to a panel question on how we can better educate and get the word out on AS.

I think Dr. Klotz covered a lot on AS in an hour.  I find it educational and useful to those who are not familiar with it; but of course less value to those who have heard about it many times before. 

 

Dr. Klotz gave the background on AS, talked about AS as a phased approach to treatment, whether G6 metastasizes, the importance of confirmatory biopsy and when to move from monitoring to treatment.  There were pertinent questions asked from the panel and the callers about AS for young men, AS for Gleason 7(3+4), mental challenge in doing AS, what confirmatory biopsy is, biomarker tests, diets and supplements, etc.   

 

Dr. Klotz did not deliberatively do any “recruitment”.  He was asked a question about “how to get the message out” on AS and he responded to it.  To hear his reply in the whole context, go to the link provided by Jim above and go to 29:00 … it's about 4 min. 

 

For those who don’t know, Dr. Klotz is an urologist who makes his living and “profits” from doing surgeries.  He emphasized twice that he was pro-treatment, not against treatment.  He was only against treatment for those with low-grade type PCa. 

 

There is obviously still some persistent ignorance about AS.  I personally see nothing wrong in “promoting” it so those with confirmed low risk PCa know that there is another option besides immediate radical treatments.  Not everyone diagnosed come to forums like this to learn about their disease; some people believe in “trusting the experts”.  If it takes promotional or marketing events to get people informed about all the treatment options before they make their decisions, so be it.  I think those who volunteer their time and efforts to do this deserve our thanks.

 

 

I don't post much but I follow along many discussions here when I have time. Our support group leader sent everyone the link to this program weeks ago, and it was very widely discussed at our last meeting. We have a lot of guys who are recently diagnosed, and many of them fit into the lower risk profile suitable for AS. Not very many new guys in our group are showing up with advanced disease, which seems to be following the national trends over the last decade or two. These new guys in particular were grateful for the information our leader provided because they simply had not heard very much about AS from their urologist. Their urologists nudge them toward surgery, but some of the guys who had similar lower risk profiles and had already gone through surgery were telling these new guys to slow down and educate themselves on their choices. One guy stood up and said he regretted his decision based on what he learned only after he had surgery. He and the other guys who had been through RP provided a good voice of reason to the newcomers on information they did not get from their surgeon. I guess to be expected that surgeons mostly promote surgery. I missed the Klotz program yesterday, but I'm sure I'll hear about it at the next meeting.

Davidg, I know who Dr. Klotz is.   He and his team at Sunnybrook coined the term “Active Surveillance”.   That does not mean he “promotes” it to profit from it.   After all, what’s there to profit if you tell your patient to go home and don’t have any treatment until it’s really necessary.   Your expectation was too high for this one-hour blogradio show.   It’s meant to be AS101 and it's for those who want to get more basic information about it.   The questions may be “soft ball” to you because you are knowledgeable about them; but not to those who needed to learn more.   They are “pertinent” to those who asked the questions.   E.g. Walt Green asked about the mental challenge of doing AS.   It’s a real issue to him because his family pressured him to “do something” and pretty much every one on his forum told him he was “a fool” to do AS.   I think you should go back to listen to Dr. Klotz’s answer to Walt’s question (at 35:10) … He said that in his experience, 5% of men couldn’t tolerate living with untreated cancer … and he respected that. But that’s after he talked about the challenge of communication with patients and giving them the right information to reassure them that they don’t need treatment.   So the % would be higher if patients were not given the proper communication/ reassurance about the need of treatment.   In the case of AS, I believe there is a need to promote it because of the general lack of awareness and understanding about it among the newly diagnosed, not because there are concerns about it.   Every treatment option has valid concerns and issues, pros and cons… it does not mean patients should not be informed about them.   It’s up to individuals to assess those concerns, treatment protocol, treatment criteria, etc. and decide which treatment is appropriate for them.   I didn’t hear Dr. Klotz slamming surgeons or surgeries.   He is one of them and as I said before, he makes his living doing surgeries.     NKinney, You can listen to the program here … http://www.blogtalkradio.com/curepanel/2014/03/19/active-surveillance-in-prostate-cancer-with-dr-laurence-klotz?Aid=CJSource&utm_source=CJ&Pid=3747368

A person can disagree with active surveillance if they want but I don't see the point of attacking someone's character in order to do it. Generally the Canadian Health care system is not as profit-motivated as the American one and Dr. Klotz would make probably make a similarly healthy salary no matter which treatment he favored. And how does the profit-motive wash when even those making this claim admit that while lucrative, it is not as expensive as surgery or radiation? Wouldn't it stand to reason that someone motivated by profit would recommend the treatment that was the most lucrative?

While no treatment should be pushed, I think there is a case to be made for letting men know that active surveillance could be a viable option, particularly when there is still significant resistance amongst many urologists and most of us are initially shell-shocked by the "c" word. It is still a far less common approach than surgery or radiation.

Generally I don't think that active surveillance is something that men can be talked into or that men can be so naive that they can be tricked into following this path. Believe me, it is a choice that requires a lot of introspection. If it isn't a choice that men can naturally come to terms with, they won't remain on this treatment path for long.

davidg,   I do understand the difference between AS and WW.   Whether AS is “big business” for a doctor really depends on the protocol he practises.   There are some urologists who use AS protocols that do generate a lot of revenues.   I have read about extreme cases of biopsies every 6 months, PSA every month or 2, frequent MRI , DRE , doctor’s visit, scans, etc.   I don’t know if it’s because they don’t have enough experience/ understanding of PCa disease progression or if it’s just profit-motivated.   Dr. Klotz’s AS protocol is PSA every 3 months for first 2 years (every 6 months afterwards), DRE once a year, doctor visit every 6 months, mpMRI and/or biopsy every 3 to 5 years (depending on individual case) unless PSA kinetics becomes concerning.   Other established AS programs use similar protocols; most notable difference is the frequency of biopsy, ranging from 18 months to 4 years.   John Hopkins is the only one still doing annual biopsies. Both in Canada and in U.S. , patients can go to local labs for their tests so doctors don’t necessarily make money off them.   AS is not “big business” for Dr. Klotz.   Re the mental challenge issue … The question posed to Dr. Klotz’s was if he had any experience with patients who have anxiety doing AS.   His reply was about 5% of patients … it came from his 20-year experience with AS.   Again, that’s after proper communication and giving patients the right information to reassure them that they don’t need immediate treatment for their low-risk PCa.   The info he gave about the personality of people who have anxiety with untreated PCa comes from studies (look them up if you’re really interested. They were about AS patient selection from a psychological perspective, not meant to ridicule patients).   Again, you are expecting too much from a 1-hour blogradio show … there was no time for any follow-up; there was a list of questions posted by participants online that weren’t even touched on.   I think you should learn to listen better and gather more facts and details before you accuse others of doing things out of self-interests.   I honestly don’t understand your other comments… sounds like some past issues you have.   I’m sure if the same thing is done for Dr. Walsh, Dr. Grimm, Dr. Patel or any other well-known PCa doctors today, it’ll be very welcome by those seeking treatment information and those interested in learning more.  

Davidg, RobinDH:

Please remember Rule #3 and refrain from getting personal back and forth on this. This needs to be a civil discussion.

Thank you,

Jim