Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 Fred, As I have said on many occasions previously, read the two important files on the subject that are on this site – go to Files at the bottom of this mail – and select Insights AS Article and European Report.2 It would also be of some benefit for you to read this study published in The Lancet and available at http://tinyurl.com/arc8s These three pieces explain in some detail why it is to the benefit of some men to choose active surveillance over immediate treatment. Logothetis, a leading expert in advanced prostate cancer, summed up the position well when he was asked a question at a US-TOO meeting in Texas. He had been commenting on the relative inaccuracy of the diagnostic process. The question was: " Does this mean that a lot of people who are diagnosed as having cancer really don't? His answer was: " Yes, if one accepts the diagnosis that the cancer is a disease that is potentially lethal……. One of the problems with prostate cancer is definition. They label it as a cancer, and they force us all to behave in a way that introduces us to a cascade of events that sends us to very morbid therapy. It's sort of like once that cancer label is put on there we are obligated to behave in a certain way, and its driven by physician beliefs and patient beliefs and frequently they don't have anything to do with reality. And they are only worrisome because the pathologist has decided to call it a cancer.” There is a high number of men treated unnecessarily for the disease – estimates are between 25% and 80%. If these views, expressed by people who have more knowledge of the disease than I do, are correct then in the USA that would mean that between 50,000 and 160,00 men EACH YEAR have a reduced quality of life for no benefit. I have never advocated that men should take the active surveillance or watchful waiting path merely because that was my choice, but I do think they should all be awre of the fact that if they have what is termed an insignificant tumour they should at least be aware of the thinking on the subject which is often not disclosed to them by their primary medical advisor. All the best Terry Herbert in Melbourne Australia Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. June '04: TURP. Feb '07 PSA 30.4 My site is at www.prostatecancerwatchfulwaiting.co.za It is a tragedy of the world that no one knows what he doesn’t know, and the less a man knows, the more sure he is that he knows everything. Joyce Carey From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of ncsailors Sent: Tuesday, 13 March 2007 10:44 AM To: ProstateCancerSupport Subject: Un=necessary Treatment? I keep reading impressions about " watchful waiting " may be a better option, than active treatments? Rather surprising. I'm a trained engineer - and always was rather pro-active. It can be said that if one elects the " active waiting " treatment - there is a good chance that sooner or later - one's early diagnosis, and treatment advantage, will be gone - and they will naturally enter the more serious " about to leave the prostrate " stage. If this is true - why would anyone opt, for the " active waiting " method? The European remark - that too many Pca patients choose active treatment methods, unnecessarily. I don't understand their reasoning. Reading, and reading ............ So many questions. I need to find the treatment experts. Fred Spring Hill, FL diagnosed 2/2007 - (1) .005% ca sample, out of 12. Negative bone scan, and body xray scan. Pro = 81ccm Had 2 hormone shot - 2 weeks ago. Scheduled for 2 more - May, August. Starting Casodex in 1 week. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 Fred - I'll put my two cents worth in on the " watchful waiting " decision. I was dx with PCa in June 1998 at the age of 58 - only 1 of the 6 biopsy specimens was positive for carcinoma, and my PSA was only 4.2 I did all the research I could, talked to an ex-brother-in- law who is a urologist and who, as he said, had probably treated " a couple of thousand " men with PCa. I was undecided about which treatment option would be best, but " watchful waiting " was not one of them for me. I just could not see not doing anything if I knew that cancer was in my body. (I know, " not doing anything " is not entirely accurate as there are some steps one can take even if no active treatment is undertaken.) A big influence for me were the words my ex brother-in-law (he is still in practice) said to me: " Have the surgery. That is the best chance you have of getting rid of the cancer. If you choose radiation, then the chances are great that the cancer will eventually return, and it will be more difficult to treat then, than now. " I took his advice and had the surgery. Being a urologist, he may have been biased toward surgery, but I respected his years of experience and his direct involvement in treating many of his patients who had prostate cancer. It's been almost 9 years for me and I'm still kickin'. I had one course of casodex (18 months) which got the PSA way down south again, and my last PSA in January 07 was 0.3. That was a slight increase from the 0.1 in June of last year, but my doctor did not believe that any additional treatment necessary at this time. Making a decision about treatment, or " watchful waiting " is difficult. But I kept asking myself the question: " If I know cancer is in my body, why would I want to just see what it will do? " My decision was not to watch and wait. Had I been 78 instead of 58, my decision might have been different. That I will never know. Good luck to you, and keep us posted, please. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 Whilst respecting your decision, I have to say that the information I suggest Fred read was simply not available to you when you were diagnosed in 1998. Perhaps if it was you may have made a different decision. It is also a fact that the majority of urologists are surgeons and the majority of surgeons will always recommend surgery, as you’d expect in the same way as the majority of radiologists will recommend radiation. It seems from what you say that your surgery may not have been successful – is that the case? The fact that you had a course of Casodex implies a rising PSA in a situation where, since the prostate was removed, there should be no PSA measurable, absent disease. If you have what is termed biomechanical failure then you have my sympathies, but I do think that you should make the position quite clear when giving advice to others. All the best, Terry Herbert in Melbourne, Australia Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. February '07 PSA 30.4 My site is at www.yananow.net As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data: Dr “Snuffy” Myers. From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of willxxssi Sent: Tuesday, 13 March 2007 12:05 PM To: ProstateCancerSupport Subject: Re: Un=necessary Treatment? Fred - I'll put my two cents worth in on the " watchful waiting " decision. I was dx with PCa in June 1998 at the age of 58 - only 1 of the 6 biopsy specimens was positive for carcinoma, and my PSA was only 4.2 I did all the research I could, talked to an ex-brother-in- law who is a urologist and who, as he said, had probably treated " a couple of thousand " men with PCa. I was undecided about which treatment option would be best, but " watchful waiting " was not one of them for me. I just could not see not doing anything if I knew that cancer was in my body. (I know, " not doing anything " is not entirely accurate as there are some steps one can take even if no active treatment is undertaken.) A big influence for me were the words my ex brother-in-law (he is still in practice) said to me: " Have the surgery. That is the best chance you have of getting rid of the cancer. If you choose radiation, then the chances are great that the cancer will eventually return, and it will be more difficult to treat then, than now. " I took his advice and had the surgery. Being a urologist, he may have been biased toward surgery, but I respected his years of experience and his direct involvement in treating many of his patients who had prostate cancer. It's been almost 9 years for me and I'm still kickin'. I had one course of casodex (18 months) which got the PSA way down south again, and my last PSA in January 07 was 0.3. That was a slight increase from the 0.1 in June of last year, but my doctor did not believe that any additional treatment necessary at this time. Making a decision about treatment, or " watchful waiting " is difficult. But I kept asking myself the question: " If I know cancer is in my body, why would I want to just see what it will do? " My decision was not to watch and wait. Had I been 78 instead of 58, my decision might have been different. That I will never know. Good luck to you, and keep us posted, please. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 Terry, if you will carefully read my post, I was not giving Fred advice but describing my decision process. I really don't know what you mean by " biomechanical failure " either. Over a period of three years, my PSA rose from 0.1 to 0.3 and my doctor chose to have me take Casodex. The PSA went immediately back to 0.1. I think I would rather have " biomechanical " failure than " nothing " failure. This is what I know: (1) I had cancer; (2) I had to make a decision about treatment; (3) I chose surgery and I know all about urologists etc. who want to do surgery; (4) In August it will be 9 years since I had the surgery and I'm doing very well, thank you. (5) I do not know what my condition might be had I chose " watchful waiting " rather than surgery - I might be dead or I might be alive. But to me, the idea of watchful waiting is just not acceptable to me, still. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 I had RP 9 years ago and had positive margins. I consider that I am on watchful waiting just as you are Terry. The only difference is that I have had radical treatment and have the side effects as a result. Watchful waiting isn't the preserve of the men who chose non treatment. Like it or not most of us are on watchful waiting. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 My apologies – on two counts. In the first place I see that you were indeed not making any recommendation, merely telling your story and secondly I misused the term biomechanical failure instead of biochemical failure. That term has come to mean an indication of failure of treatment when the PSA is observed to rise. The common view in the medical world is that a detectable rising PSA after surgery is an indication that the disease has not been ‘cured’. It seemed to me that this might apply in your case. You say <snip> I do not know what my condition might be had I chose " watchful waiting " rather than surgery - I might be dead or I might be alive. <snip> That is true for everyone, but the papers that have been published demonstrate clearly that for men with a diagnosis such as yours, the chances of dying within nine years of diagnosis are not differentiated by choice of treatment. The only paper that shows a different picture is the European Paper I placed on this site that shows after five years that there were deaths in each of the three conventional treatment arms, but none in the watchful waiting arm. That study has many years to go and it may be that in the end the men who had conventional treatment will outlive the men who did not have such treatment. All the best Terry Herbert in Melbourne Australia Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. June '04: TURP. Feb '07 PSA 30.4 My site is at www.prostatecancerwatchfulwaiting.co.za It is a tragedy of the world that no one knows what he doesn’t know, and the less a man knows, the more sure he is that he knows everything. Joyce Carey From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of willxxssi Sent: Wednesday, 14 March 2007 1:11 AM To: ProstateCancerSupport Subject: Re: Un=necessary Treatment? Terry, if you will carefully read my post, I was not giving Fred advice but describing my decision process. I really don't know what you mean by " biomechanical failure " either. Over a period of three years, my PSA rose from 0.1 to 0.3 and my doctor chose to have me take Casodex. The PSA went immediately back to 0.1. I think I would rather have " biomechanical " failure than " nothing " failure. This is what I know: (1) I had cancer; (2) I had to make a decision about treatment; (3) I chose surgery and I know all about urologists etc. who want to do surgery; (4) In August it will be 9 years since I had the surgery and I'm doing very well, thank you. (5) I do not know what my condition might be had I chose " watchful waiting " rather than surgery - I might be dead or I might be alive. But to me, the idea of watchful waiting is just not acceptable to me, still. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2007 Report Share Posted March 13, 2007 Indeed, , you are quite correct. Men often say that they wouldn’t be able to take the stress of having to watch for signs of progression if they don’t have immediate treatment – yet everyone who has been diagnosed with prostate cancer faces this. How they deal with it is well described in this paragraph from the study entitled Active Surveillance For Favorable Risk Prostate Cancer: What Are The Results, and How Safe Is It? : <SNIP> The psychological effects of living for many years with untreated cancer are a potential concern. Does the cumulative effect, year after year, of knowing one is living with untreated cancer lead to depression or other adverse effects? The best data on this comes from a companion study to the Holmberg randomized trial of surgery vs. watchful waiting in Sweden. It found absolutely no significant psychological difference between the two groups be after five years. Worry, anxiety, depression, all were equal between the two arms. While surveillance may be stressful for some men, the reality is that most patients with prostate cancer, whether treated or not, are concerned about the risk of progression. Anxiety about PSA recurrence is common among both treated and untreated patients. It is hoped that with education patients will begin to understand the very indolent natural history of most good-risk prostate cancers and, with the realization that the disease is not life-threatening, may avoid much of this anxiety. <SNIP> All the best Terry Herbert in Melbourne Australia Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 3+3=6: No treatment. June '04: TURP. Feb '07 PSA 30.4 My site is at www.prostatecancerwatchfulwaiting.co.za It is a tragedy of the world that no one knows what he doesn’t know, and the less a man knows, the more sure he is that he knows everything. Joyce Carey From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of coolerking5@... Sent: Wednesday, 14 March 2007 9:58 AM To: ProstateCancerSupport Subject: Re: Re: Un=necessary Treatment? I had RP 9 years ago and had positive margins. I consider that I am on watchful waiting just as you are Terry. The only difference is that I have had radical treatment and have the side effects as a result. Watchful waiting isn't the preserve of the men who chose non treatment. Like it or not most of us are on watchful waiting. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 > > I had RP 9 years ago and had positive margins. I consider that I am on > watchful waiting just as you are Terry. The only difference is that I have had > radical treatment and have the side effects as a result. Watchful waiting isn't > the preserve of the men who chose non treatment. Like it or not most of us > are on watchful waiting. > > I had IMRT AND CONFORMAL BEAM FIVE AND A HALF YEARS AGO, and I'm on watchful waiting too. My PSA has gone up from 2.31 to 3.31 in one year. So now I have some side effects from my treatment, (all things considered not bad at all), but still sweating out the PSA'S every thee months or so. In 2001, my PSA was 4.5, gleason 7, could not feel any tumor with the digital exam. I keep a low fat diet, 8 oz. of pomegranate juice every day, sex life still great, but getting severe eye strain from watching my PSA's so hard. Bob Quote Link to comment Share on other sites More sharing options...
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