Guest guest Posted January 31, 2010 Report Share Posted January 31, 2010 JB There are two that I know of, atough there are bound to be more: The older of the two is a list you can join here http://www.prostatepointers.org/mailman/listinfo/ww The second is part of The New Prostate Cancer site and the relevant page is here http://prostatecancerinfolink.ning.com/group/activesurveillance There have been others but they closed due to lack of interest. You will find very few posts on either of these forums either. For some reason I have never been able to establish (and I’ve been trying for about 13 years) men who choose Active Surveillance or Watchful Waiting seem very much more reluctant to discuss issues than the men who choose conventional treatment. my basic theory is along the lines that (1) AS/WW men tend to be somewhat non-conformists, perhaps not very good “Group” people, marching by and large to their own tune and (2) because their choice is nt a popular one, they are reluctant to post because they know that they will attract a good deal of mail urging them to stop being in denial and have surgery – or……………………………fill in the treatment the mailer had himself. I have a site, badly in need of re-construction here www.prostatecancerwatchfulwaiting.co.za All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : " As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data " From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of jb indc Sent: Monday, 1 February 2010 1:23 PM To: ProstateCancerSupport Subject: Active Surveillance Does anyone know of a Yahoo group, or other support group, for active surveillance or " watchful waiting " ? JB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Terry said... Watchful Waiting seem very much more reluctant to discuss issues than the men who choose conventional treatment. my basic theory is along the lines that (1) AS/WW men tend to be somewhat non-conformists, perhaps not very good “Group” people, marching by and large to their own tune and (2) because their choice is nt a popular one, they are reluctant to post because they know that they will attract a good deal of mail urging them to stop being in denial and have surgery May I offer a few more possible reasons for limited participation in AS/WW groups? Here are my thoughts: (3) These folks don't (yet) have the host of post-treatment/failed-treatment issues that dominate discussions on more general PCa lists. The AS/WW guys are in the mode of getting routine PSAs, DREs, biopsies, CDUs, etc. Maybe there is not as much to question here? (4) I don't know the numbers, but I suspect that with the push for treatment by the medical profession in most cases, many more men receive treatment than go on AS. Along the lines of numbers, I also suspect that a fair number of men who have treatment do not participate in groups because any SEs from their treatment have been resolved satisfactorily and they go on about their lives. It is likely, however, that numbers of men with questions regarding which treatment to pursue and men with questions regarding post treatment issues far outnumber men with AS questions Ant thoughts? Stan JB There are two that I know of, atough there are bound to be more: The older of the two is a list you can join here http://www.prostatepointers.org/mailman/listinfo/ww The second is part of The New Prostate Cancer site and the relevant page is here http://prostatecancerinfolink.ning.com/group/activesurveillance There have been others but they closed due to lack of interest. You will find very few posts on either of these forums either. For some reason I have never been able to establish (and I’ve been trying for about 13 years) men who choose Active Surveillance or – or……………………………fill in the treatment the mailer had himself. I have a site, badly in need of re-construction here www.prostatecancerwatchfulwaiting.co.za All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : " As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data " From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of jb indc Sent: Monday, 1 February 2010 1:23 PMTo: ProstateCancerSupport Subject: Active Surveillance Does anyone know of a Yahoo group, or other support group, for active surveillance or " watchful waiting " ? JB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Stan, You are certainly correct about the numbers of men who have chosen Active Surveillance in the past. They are a small percentage of eligible men because of the focus on the ‘gold standard’ of surgery – this may change in the future when the new Guidelines (downloadable here after registration http://www.nccn.org/professionals/physician_gls/f_guidelines.asp ) are more widely circulated and acted on and as men come to realize that, as a study last year showed, there may be more than one million men in the US living with the side effects of treatment that was unnecessary. But having said that, there is a significant number of men who did not choose immediate treatment and the Forums have several hundred members. In any forum about 5% of members post on a regular basis and another 10% (roughly) post intermittently – the balance do not directly participate, although there is always contact off the forum or list. So one would expect far fewer posts from AS men but none of the forums I have participated in show anything like a 5% post rate. You certainly have a point about the lack of side effects which do form the basis of many posts on PCa forums, but they are not the sole reason for a post and there are some issues that could be usefully discussed by AS men. All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : " As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data " From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Stan Leake Sent: Tuesday, 2 February 2010 2:47 AM To: ProstateCancerSupport Subject: Re: Active Surveillance Terry said... Watchful Waiting seem very much more reluctant to discuss issues than the men who choose conventional treatment. my basic theory is along the lines that (1) AS/WW men tend to be somewhat non-conformists, perhaps not very good “Group” people, marching by and large to their own tune and (2) because their choice is nt a popular one, they are reluctant to post because they know that they will attract a good deal of mail urging them to stop being in denial and have surgery May I offer a few more possible reasons for limited participation in AS/WW groups? Here are my thoughts: (3) These folks don't (yet) have the host of post-treatment/failed-treatment issues that dominate discussions on more general PCa lists. The AS/WW guys are in the mode of getting routine PSAs, DREs, biopsies, CDUs, etc. Maybe there is not as much to question here? (4) I don't know the numbers, but I suspect that with the push for treatment by the medical profession in most cases, many more men receive treatment than go on AS. Along the lines of numbers, I also suspect that a fair number of men who have treatment do not participate in groups because any SEs from their treatment have been resolved satisfactorily and they go on about their lives. It is likely, however, that numbers of men with questions regarding which treatment to pursue and men with questions regarding post treatment issues far outnumber men with AS questions Ant thoughts? Stan On Sun, Jan 31, 2010 at 8:44 PM, Terry Herbert <ghenesh_49optusnet.au> wrote: JB There are two that I know of, atough there are bound to be more: The older of the two is a list you can join here http://www.prostatepointers.org/mailman/listinfo/ww The second is part of The New Prostate Cancer site and the relevant page is here http://prostatecancerinfolink.ning.com/group/activesurveillance There have been others but they closed due to lack of interest. You will find very few posts on either of these forums either. For some reason I have never been able to establish (and I’ve been trying for about 13 years) men who choose Active Surveillance or – or……………………………fill in the treatment the mailer had himself. I have a site, badly in need of re-construction here www.prostatecancerwatchfulwaiting.co.za All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : " As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data " From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of jb indc Sent: Monday, 1 February 2010 1:23 PM To: ProstateCancerSupport Subject: Active Surveillance Does anyone know of a Yahoo group, or other support group, for active surveillance or " watchful waiting " ? JB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Terry I suppose whichever way you look at it, AS is a thousand times better than WW. Certainly from our UK point of view. WW seemed to mean wait till you you hurt somewhere and we show it is bone mets or whatever manifestation secondaries turn up as. True in many men this didn't happen before the apparition with the scythe carried them away with some different cause. The newer AS in its true sense tries to monitor changes in PSA etc. In some cases indication comes that there is agressive movement that indicates either radical action or maintainance of the close watch. In other cases indications are that there is slow or imperceptable change, thus the periods between tests can be lengthened. Regarding e-forums such as ours, membership tends to be mainly those who still have issues. Only a few of those who have radical treatment and minimal side effects stay with groups, I'm grateful for those that do. Also I can imagine that if AS is going well, there are more important things in life than reading about other people's troubles, again I am grateful for those who stay with us. Best wishes to you all RE: Active Surveillance Stan, You are certainly correct about the numbers of men who have chosen Active Surveillance in the past. They are a small percentage of eligible men because of the focus on the ‘gold standard’ of surgery – this may change in the future when the new Guidelines (downloadable here after registration http://www.nccn.org/professionals/physician_gls/f_guidelines.asp ) are more widely circulated and acted on and as men come to realize that, as a study last year showed, there may be more than one million men in the US living with the side effects of treatment that was unnecessary. But having said that, there is a significant number of men who did not choose immediate treatment and the Forums have several hundred members. In any forum about 5% of members post on a regular basis and another 10% (roughly) post intermittently – the balance do not directly participate, although there is always contact off the forum or list. So one would expect far fewer posts from AS men but none of the forums I have participated in show anything like a 5% post rate. You certainly have a point about the lack of side effects which do form the basis of many posts on PCa forums, but they are not the sole reason for a post and there are some issues that could be usefully discussed by AS men. All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : "As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data" From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Stan LeakeSent: Tuesday, 2 February 2010 2:47 AMTo: ProstateCancerSupport Subject: Re: Active Surveillance Terry said... Watchful Waiting seem very much more reluctant to discuss issues than the men who choose conventional treatment. my basic theory is along the lines that (1) AS/WW men tend to be somewhat non-conformists, perhaps not very good “Group” people, marching by and large to their own tune and (2) because their choice is nt a popular one, they are reluctant to post because they know that they will attract a good deal of mail urging them to stop being in denial and have surgery May I offer a few more possible reasons for limited participation in AS/WW groups? Here are my thoughts: (3) These folks don't (yet) have the host of post-treatment/failed-treatment issues that dominate discussions on more general PCa lists. The AS/WW guys are in the mode of getting routine PSAs, DREs, biopsies, CDUs, etc. Maybe there is not as much to question here? (4) I don't know the numbers, but I suspect that with the push for treatment by the medical profession in most cases, many more men receive treatment than go on AS. Along the lines of numbers, I also suspect that a fair number of men who have treatment do not participate in groups because any SEs from their treatment have been resolved satisfactorily and they go on about their lives. It is likely, however, that numbers of men with questions regarding which treatment to pursue and men with questions regarding post treatment issues far outnumber men with AS questions Ant thoughts? Stan On Sun, Jan 31, 2010 at 8:44 PM, Terry Herbert <ghenesh_49optusnet.au> wrote: JB There are two that I know of, atough there are bound to be more: The older of the two is a list you can join here http://www.prostatepointers.org/mailman/listinfo/ww The second is part of The New Prostate Cancer site and the relevant page is here http://prostatecancerinfolink.ning.com/group/activesurveillance There have been others but they closed due to lack of interest. You will find very few posts on either of these forums either. For some reason I have never been able to establish (and I’ve been trying for about 13 years) men who choose Active Surveillance or – or……………………………fill in the treatment the mailer had himself. I have a site, badly in need of re-construction here www.prostatecancerwatchfulwaiting.co.za All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : "As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data" From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of jb indcSent: Monday, 1 February 2010 1:23 PMTo: ProstateCancerSupport Subject: Active Surveillance Does anyone know of a Yahoo group, or other support group, for active surveillance or "watchful waiting"? JB No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.5.432 / Virus Database: 271.1.1/2662 - Release Date: 02/01/10 12:37:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Terry, Your links are very, very interesting and seem to support my own research of available papers. One thing you did not highlight, at least on the pages that I perused was the issue of PCA3 as a biomarker of PC. For some time I have been looking for some informative research papers on its efficacy, especially as it relates to the " middle ground " where a subject has biopsy indications of LGPIN and/or HGPIN. My urologists office uses a pass/fail measure of PCA3 yet when I inquired of the calling technician/nurse what my actual score was, they were totally befuddled and had to call back the next day after educating themselves as to the range of the scores. The test is usually marked as " fail " with a score of 35 or more. Mine happened to be 86.9 where, as the best I can gather, the probability of finding a biopsy result of cancer is approximately 35% plus or minus. But no where did anyone connect the prior biopsies listing of L/HGPIN to the PCA3 score results. When PCA3 testing is mentioned, it is usually shared that cancer cells cause PCA3 to be expressed anywhere from 50-200 times that of normal cells. But rarely does one find a relationship of PIN cells to normal cells until I found one reference where it appeared through comparing data group results that PIN expresses PCA3 in approximately 20-40 times normal cells (my estimate derived from the comparison). M point in mentioning this is that, if there are others like me, who are getting periodic biopsies (two so far and probably another soon) and are potentially suffering the consequences of those biopsies (greater incidence/risk of ED in particular), any data can be useful in analyzing next steps. At least that would be true if they can get past the initial PSA (and now PCA3) anxiety or later " get it out! " with a " minor " /insignificant biopsy result. I also suspect that, like your site and your message above notes, many do not take an active interest in assessing their situation until the news seems more ominous. I would offer that one of the things that folks can do for others under scrutiny is to encourage them to get involved in their diagnosis very actively and critically. Rich L Green Bay, Wi > > JB > > > > There are two that I know of, atough there are bound to be more: > > > > The older of the two is a list you can join here > http://www.prostatepointers.org/mailman/listinfo/ww > > > > The second is part of The New Prostate Cancer site and the relevant page is > here http://prostatecancerinfolink.ning.com/group/activesurveillance > > > > There have been others but they closed due to lack of interest. You will > find very few posts on either of these forums either. For some reason I have > never been able to establish (and I've been trying for about 13 years) men > who choose Active Surveillance or Watchful Waiting seem very much more > reluctant to discuss issues than the men who choose conventional treatment. > my basic theory is along the lines that (1) AS/WW men tend to be somewhat > non-conformists, perhaps not very good " Group " people, marching by and large > to their own tune and (2) because their choice is nt a popular one, they are > reluctant to post because they know that they will attract a good deal of > mail urging them to stop being in denial and have surgery - > or...........fill in the treatment the mailer had himself. > > > > I have a site, badly in need of re-construction here > <http://www.prostatecancerwatchfulwaiting.co.za/> > www.prostatecancerwatchfulwaiting.co.za > > > > All the best > > > > Terry Herbert > > I have no medical qualifications but I was diagnosed in '96: and have > learned a bit since then. > > My sites are at www.yananow.net <http://www.yananow.net/> and > <http://www.prostatecancerwatchfulwaiting.co.za/> > www.prostatecancerwatchfulwaiting.co.za > > Dr " Snuffy " Myers : " As a physician, I am painfully aware that most > of the decisions we make with regard to prostate cancer are made with > inadequate data " > > > > _____ > > From: ProstateCancerSupport > [mailto:ProstateCancerSupport ] On Behalf Of jb indc > Sent: Monday, 1 February 2010 1:23 PM > To: ProstateCancerSupport > Subject: Active Surveillance > > > > > > Does anyone know of a Yahoo group, or other support group, for active > surveillance or " watchful waiting " ? JB > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Rich I have been meaning to write up something on PCA3 for some time now. I’ll try to do that fairly soon. I believe it is over-hyped and is no more accurate (and maybe a good deal less accurate) than a PSA test in practical terms. Ever since it was announced I felt that since it depends on ‘the vigorous massage’ of the prostate gland to shake enough material loose and into the urine, there are bound to be difficulties – just what is ‘vigorous’; glands vary in size, shape and position,; doctors fingers vary in length and strength. It is one thing producing results in laboratory conditions and quite another to do the same thing in the doctor’s office. Published studies have shown some of the problems. Jon, who posts here quite regularly, has had a very scientific approach in setting up his AS protocol which involves the use of color-Doppler imaging, which is not invasive. If he doesn’t respond to this mail of yours you can do one of two things (or both) put his posting name into the Messages Search engine – he posts as ccnvw – or mail him at ccnvw@... – he’s always happy to hep a fellow traveler along his chosen path. In the absence of the color-Doppler procedure in South Africa (where I was living) or here in Australia, my ‘protocol’ excluded biopsy procedures. after discussing the issues with a doctor in Netherlands, who shared my views about treatment, he suggested that I keep having PSA tests at regular intervals, and have a bone scan every second or third year, or act on the development of symptoms. Most people would not agree with that approach and I am certainly not recommending it, but it has worked for me and I am content with my decisions – and the potential result of those decisions, especially bearing in mind the fact that I was nearly cured four years ago when I had a heart failure episode!! As someone mentioned here a post or two back, that’s the only guaranteed cure. Incidentally, I assume you have read up the stories of the 30+ men who chose the AS route originally – they’re indexed at http://www.yananow.net/Experiences.html#as All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : " As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data " From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Rich Sent: Tuesday, 2 February 2010 3:07 PM To: ProstateCancerSupport Subject: Re: Active Surveillance Terry, Your links are very, very interesting and seem to support my own research of available papers. One thing you did not highlight, at least on the pages that I perused was the issue of PCA3 as a biomarker of PC. For some time I have been looking for some informative research papers on its efficacy, especially as it relates to the " middle ground " where a subject has biopsy indications of LGPIN and/or HGPIN. My urologists office uses a pass/fail measure of PCA3 yet when I inquired of the calling technician/nurse what my actual score was, they were totally befuddled and had to call back the next day after educating themselves as to the range of the scores. The test is usually marked as " fail " with a score of 35 or more. Mine happened to be 86.9 where, as the best I can gather, the probability of finding a biopsy result of cancer is approximately 35% plus or minus. But no where did anyone connect the prior biopsies listing of L/HGPIN to the PCA3 score results. When PCA3 testing is mentioned, it is usually shared that cancer cells cause PCA3 to be expressed anywhere from 50-200 times that of normal cells. But rarely does one find a relationship of PIN cells to normal cells until I found one reference where it appeared through comparing data group results that PIN expresses PCA3 in approximately 20-40 times normal cells (my estimate derived from the comparison). M point in mentioning this is that, if there are others like me, who are getting periodic biopsies (two so far and probably another soon) and are potentially suffering the consequences of those biopsies (greater incidence/risk of ED in particular), any data can be useful in analyzing next steps. At least that would be true if they can get past the initial PSA (and now PCA3) anxiety or later " get it out! " with a " minor " /insignificant biopsy result. I also suspect that, like your site and your message above notes, many do not take an active interest in assessing their situation until the news seems more ominous. I would offer that one of the things that folks can do for others under scrutiny is to encourage them to get involved in their diagnosis very actively and critically. Rich L Green Bay, Wi > > JB > > > > There are two that I know of, atough there are bound to be more: > > > > The older of the two is a list you can join here > http://www.prostatepointers.org/mailman/listinfo/ww > > > > The second is part of The New Prostate Cancer site and the relevant page is > here http://prostatecancerinfolink.ning.com/group/activesurveillance > > > > There have been others but they closed due to lack of interest. You will > find very few posts on either of these forums either. For some reason I have > never been able to establish (and I've been trying for about 13 years) men > who choose Active Surveillance or Watchful Waiting seem very much more > reluctant to discuss issues than the men who choose conventional treatment. > my basic theory is along the lines that (1) AS/WW men tend to be somewhat > non-conformists, perhaps not very good " Group " people, marching by and large > to their own tune and (2) because their choice is nt a popular one, they are > reluctant to post because they know that they will attract a good deal of > mail urging them to stop being in denial and have surgery - > or...........fill in the treatment the mailer had himself. > > > > I have a site, badly in need of re-construction here > <http://www.prostatecancerwatchfulwaiting.co.za/> > www.prostatecancerwatchfulwaiting.co.za > > > > All the best > > > > Terry Herbert > > I have no medical qualifications but I was diagnosed in '96: and have > learned a bit since then. > > My sites are at www.yananow.net <http://www.yananow.net/> and > <http://www.prostatecancerwatchfulwaiting.co.za/> > www.prostatecancerwatchfulwaiting.co.za > > Dr " Snuffy " Myers : " As a physician, I am painfully aware that most > of the decisions we make with regard to prostate cancer are made with > inadequate data " > > > > _____ > > From: ProstateCancerSupport > [mailto:ProstateCancerSupport ] On Behalf Of jb indc > Sent: Monday, 1 February 2010 1:23 PM > To: ProstateCancerSupport > Subject: Active Surveillance > > > > > > Does anyone know of a Yahoo group, or other support group, for active > surveillance or " watchful waiting " ? JB > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.