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Recently I've been posting some of the information I find in my search to better understand this disease and it seems the more I find out the more concerns I have. I ran into this the other day and wanted to get opinions from the people on this forum on how accurate this statement is. I'll post a link to the site and the particular quote that troubled me. It's the last sentance that hit me so hard.
Each year 40,000 American men have their prostates surgically removed or burned with radiation, often within 48 hours of cancer diagnosis. While doing so may eliminate an immediate problem, it will also result in reduced quality of life, often including impotence and incontinence. And, unfortunately, surgery and radiation don't work as well as claimed. Often the cancer recurs -- 35% require retreatment within 5 years and 75% within 10 years.
You are no stranger here by the way. We are all in this fight together. I was Dx with T4 PCa that meted to my bones. So surgery was not an option for me. I was not happy at the time because there is no 'cure' for advanced disease. Treatment for me is ADT and now that has failed.
What does this have to do with your questions here? Is this man nuts or has ADT finally completely rotted his brain? Point is I still have my prostate. If I had a T1 disease they would have cut it out. And in about 2 to 5 years later my PSA would have started to rise.
Good luck in your study. If you have your prostate removed have it done by someone who knows what they are doing.
I've been reading this site for a while and have read your story so I know how difficult your life is so thanks so much for your reply. I've been doing a lot of research recently and that site upset and confused me so I wanted to see how others felt about it. There are so many sides to this disease I can't really get a handle on it. It seems the more I learn the more confused I get.
But this site is different than all the others because it lets you see how real people are dealing with their situation which gives you information you can't find anywhere else, or anywhere I've found so far. I think Terry Herbert is doing a great service for the world. This site has helped me the most as far as finding out the real story on treatment and how people deal with it.
In one of your updates you talked about how hard it was waiting for your PSA results and when I got my last PSA test I was just like you, up the wall and anxiety to the max. I don't know if you're a man of faith but I am and I will pray for you.
Personally, I think the strength of this site is in all the histories that are available. Along with the willingness of everyone to be helpful wherever possible. Someone newly diagnosed gets to find others from very similar situations and learns how to best travel the path upcoming. That is so valuable and not readily available anywhere else that I know.
I just say this as a counterpoint to the general statements and opinions like what is quoted in this thread. The quote is surely ok and likely can provoke interesting discussion. But I don't think it is the sort of thing that will be helpful to someone in the process of dealing with this disease.
I agree completely, this site is the best place I've found to get real information about how people are dealing with their treatment and I'm glad I found it. As I said to Steve B I think Terry Herbert is doing a great service for the world by running this site.
I was doing a google search when I found that site, actually that site was linked to by another site I was reading and as I went through it that page upset me so I wanted to see if what it said was true, but maybe I shouldn't have posted it.
It seems the more I read about PCa the more confused I get and that's why I posted it, to get some clarification from people that know. To be honest what that site said scared me and I was seeking more information about whether it was right or wrong. We don't always get the straight story from the medical profession so sometimes we have to dig it up ourselves, and that's what I was trying to do.
I looked at that too but like you I know nothing about it. What I'm hoping is when Terry Herbert gets back he'll know something about it and can chime in and share his knowledge about it. I guess I have to admit it I'm considering buying his book, Prostate Health in 90 Days. It's probably wishful thinking on my part but it would be nice to find something that helped the way they're saying it will.
I hope your medication is still helping you and your more relaxed and doing better still. Hang in there and don't forget I keep you in my heart and ask God to stay with you at all times.
I have been fighting the disease for 12 years and have been very active in trying to bring PCa awareness in Israel, giving support and generally participating in many of the forums on the Internet. If there is one thing that I have learned is that stats. are not reliable.Every week there are new findings that contradict somebody's else. What is applicable for one person is not for the next. As Terry says "there is only one thing definite with PCa,that there is nothing.
We have to come to terms with living with the cancer and it's side effects. Why not look at it as another bump in the road of life? Fear and tension weakens the bodies immune system.There is so much that we can do for ourselves in coming to terms with our situation. The most important thing for me is to get along with my life and make the most of every minute. Why worry about something that might or might not happen?
As a new person researching this disease I'm trying to learn everything I can to arm myself with the knowledge I feel is necessary to move on with my life. Then when I run into something that is troublesome or confusing I try to post it here to share it with others because it might be beneficial to them too.
Sometimes I find things I don't want to know about but I feel it's better to know about them than not so that's why I started this thread. To be honest I feel the information I quoted is very important for the person just starting their search because it brings to light that the journey isn't as easy as many Doctors say it is. Doctors seem to convey the message that if you have surgery you'll be fine and rid of the cancer, but the more research I do the more I find out that's simply not the truth in many cases. And I want to know what may or may not happen to me going into the process so I can set my expectations correctly. Case in point, the Doctor performs surgery with negative margins and a good pathology report but the cancer returns in months or years. I feel knowing that happens a significant amount of time is better than not knowing it because being blind sided by it would be worse.
As you said, trying to control your fear and moving on with your life is the best thing you can do, because we gain nothing by worry and anxiety but harm to ourselves. And enjoying the rest of the life God gave us is the best thing any of us can do, but I've found worry and anxiety to be my partner in this and haven't been able to push him aside. So like many others I worry about it a lot, the truth be told it's with me always.
שלום
I do not believe in telling people what to do, but would suggest that you work on your fears.How I do not know, but it might be worth your while to take time out from the cancer and switch your computer off for a few days.
I am not familiar with your case nor where you are in your treatment route. Some years ago Tery wrote a pamphlet called a Strange Place. He might still have some copies around. This prostate world is in deed a very strange place and terribly complicated. Bear in mind that more people die on the roads than of PCa, (in Israel), but we carry on driving.
There is a wonderful world out there. Go out and enjoy it
Thanks for your advice Lenny and I often do that, forget about the disease for a while and do things I enjoy. That usually reliefs the built up stress for a while, the stress comes back but it's a nice break and good advice. So thanks for your reminder that we must enjoy the life God gave us as much as possible.
When you do nothing but research this disease it gets you down, that's for sure. But I have learned what you pointed out, that the majority of PCa patients do pretty well and still have much life to live. But I'm a person with great empathy and some of the stories I've read has hurt me deeply. I don't regret reading them because I believe empathy is a quality God gives us and makes us better servants.
You mentioned where I am in my travels but the only answer I have right now is near the beginning and since I'm such a private person I've only shared my feelings with about five people, one of which is my wife. And to be honest that's the reason I read this forum for so long without posting. Good or Bad I haven't been able to share my feelings. Maybe that's why I started posting here. I can share my thoughts and fears with people I know will understand and maybe also understand my private nature.
Stranger ... as you know, we have to be careful about what we read.
I looked at the link you posted and wondered about it also. I cliked on the heading "Prostate Biopsies Risky, Unnecessary".
The "source" for that statement was a website from "Phoenix Sonograms". They're simply pushing sonograms. I didn't have to read any further.
When I was first diagnosed I read everything online that I could find. What I "found" was a lot of "sales" ads from various cancer treatment facilities touting their program and the best and greatest.
I learned quickly but, even so, you're right, it's very confusing.
This website has been the best resource for me. The folks on here helped me more than all the other information out there, including my own doctors.
You're right, this site is the best place I've found to get the real information on how people are doing with their treatment, Terry Herbert is doing a great service by running this site. You're also right about many of the websites pushing their services and I try to take that into consideration when I read them. But something from the urologists website I was refered to rings pretty close to what that website said and I'll quote it below.
Quote from URO website
Generally, PSA values less than 10, prostate cancer volume less than 6 cubic cm and Gleason's score of less than 6 are all favorable prognostic indicators, suggesting that a radical prostatectomy may yield a cure. However, one third to one half of patients who have undergone radical prostatectomy will have a positive PSA 1-3 years following surgery, indicating that they have not been cured of their underlying disease.
To be honest that quote from his website caused me to start searching the web to find out as much as I can about the different treatments and what to expect. And I might possibly reflect the view of many others in the fact it scares me and worries me every moment of my life.
Terry Herbert mentioned in one of his posts about lurkers in forums that read to get information but for one reason or another do not post. That was me for a long time because I was always afraid of sharing my thoughts, but when Joe 67 requested help dealing with his mental issues that brought me out because I wanted to comfort him if I could. I had read all of his posts and his story and wanted to help him anyway I could, even if it was only a friendly message from a Stranger (why i'm the stranger by the way) to help relieve some of his anxiety at the time.
So I'll try my best to take your advice and watch for sites that are simply pushing their treatment, and thanks for your reply.
G'day Stranger - and thank you (and the others) for the kind words.
As Lenny says, I do often quote the late Aubrey Pilgrim's dictum “The Golden Rule of prostate cancer is that there are No Rules.” - that’s what makes any decision so darned difficult – the lack of certainty. (Incidentally the booklet I wrote “A Strange Place” is on the site at http://www.yananow.net/StrangePlace/index.html )
You can reduce the uncertainty factor to a certain degree by looking carefully at the background of information that you come across – there is an adage that goes back to Roman times cui bonis meaning who benefits . If the person supplying the information is someone who will benefit from the way it is presented, why there’s another Roman phrase that applies caveat emptor – let the buyer beware In this case the man presenting the information is Larry Clapp, a man with a reputation that is not the best. His background was investigated thoroughly by a man on the Internet some years ago and much of what he claimed as to his background was said to be incorrect.
But leaving that aside, what you simply MUST do in evaluating any evidence is to see how relevant it is to the current situation. The disease we call prostate cancer now is not the same as the disease diagnosed prior to the use of PSA – then it was about 80% late stage disease: now it is about 80% (or more) early stage disease. Naturally there is a greater failure rate in late stage disease than in early stage disease.
The first reference to a 34.9% failure rate in five years was published in 1996 – that’s 12 years ago – involving men treated from 1985 to 1992. Were the men in 1985 diagnosed through the use of PSA tests? What was their staging and Gleason Score? – as you know the chances of failure are much higher in a man with a Gleason Score of 8 compared with a man with a Gleason Score of 6. I’d also like to see the study in which Grace L. Lu-Yao is said to refer to this antique failure rate The last study I saw attributed to her – about four months ago, from memory, was one in which she reiterated her view that there was too much treatment of diseases that did not require treatment.
The second study quoted refers to 1600 patients operated on by Dr Patrick Walsh in 15 years prior to 1997 – that’s going back to 1982 by my reckoning - over a quarter of a century. I don’t know how many men Walsh would have operated on in that time, but it is certainly likely to be more than 100 men per annum. And again there is no reference to stage or Gleason – so IF the quotation is correct, then it seems likely that there was some selection of men from within the total group operated on – perhaps to make a point?
Finally, of course, we need to know how ‘failure’ is defined in these alleged studies. One recent publication suggested there were over 200 definitions of failure!
I’m not sure that this is much help and I have to dash off right now. But.. I’ll be back…
You're welcome for the kind words and you deserve everyone of them. This site provides a great service for the people researching prostate cancer. It gives each one of us a look inside the lives of real people fighting the disease which is so important in your search for what will happen to you. The fact the mentor stories includes such a wide range of cases allows everyone to find something to relate to. I can't tell you how important that was to me and I'm sure each person that finds this site feels the same way.
Thank you for the information about Larry Clapp, your answer is exactly why I posted the quote from his site on this forum. I consider myself a person with a fair understanding of this disease and it's treatments because I've been researching it for quite a while but that only gives me an overall view of the disease and it's treatments, not the background you have where you can pull up stored knowledge from years of dealing with it and the research you've done. The fact is that quote from his website scared me a lot, but your answer put it in a different perspective and that's what I needed. But I also put a quote from the UROs website I was referred to which states similar odds, albeit better odds than the one quoted on Larry Clapps website, but the quote from the UROs website also scared me. And I guess that's the way it is, after all it's prostate cancer we're talking about. We all want the magic bullet but it simply isn't there, so we're left with choices we don't want to make.
I have read your personal story on yananow and your other website and follow your case with a great deal of personal interest. I have so much to say about your personal story that it can't be put here or this reply would be huge, so I'll just say the courage and determination you've shown is extremely inspiring and shows that active treatment is not the only choice. Of course I realize for some men active treatment is the only choice but like you've pointed out in your story on yananow and your personal site it's not the only choice that should be considered. And like you've said each time you speak of it, it's not an easy path to follow and not the correct choice for many men. So having said that I'll finish this paragraph with one last thought.
You're my hero.
I read the Strange Places link, thanks for posting it. I've been reading this site for quite a while and have scoured all over it looking for information. I can't tell you how many mentor stories I've read.
Your comments about making sure what you find is relevant to the current situation was well taken and something I forget to do sometimes, but knowing and evaluating the past is important because the past is always nipping away at the heals of the future. By that I mean the UROs website I was refered to quotes odds that aren't that far from the ones on Larry Clapps website, a 33 to 50 percent failure rate for PSAs less than 10. Of course his information might be older too since it doesn't have any dates associated with it.
But none the less, thanks so much for your reply it was both informative and comforting. Keep up the good work on yannow and prostatecancerwatchfulwaiting.
