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In this information/internet age, it is hard to believe, and almost inexcusable, that the majority of men allow themselves to be led by the hand by their doctors from screening through treatment - unwisely & unquestionably putting their full faith in the man because of his education & expertise.
In a recent post, I talked about how it is the doctor's responsibilty to make sure his patient makes an informed choice regarding screening & treatment based upon the recommendations set forth by the U.S. Preventive Services Task Force & similar worldwide organizations. That being said, the patient also has a responsibilty to himself to do his own research regarding his cancer so that he is not subject to the potential bias of his doctor.
In other words, in an ideal world the doctor would objectively educate the patient on the pros & cons of screening & treatment, but the reality is that the medical profession has for years had a bias toward screening & treatment and that bias is not going to go away overnight because of the recommendations of the Task Force.
So, the best way for the patient to make sure he is making an informed choice is by educating himself with the tools at his disposal, (such as this website) before going in to see his doctor. That way, if something the doctor says doesn't seem right based upon the patient's research, he is in a position to question the doctor's viewpoint and make up his own mind as to whether or not that doctor is worthy of his trust. If the patient does not look out for himself in this way, then, to a certain degree, he has no one to blame but himself if the doctor leads him down the wrong road.
I realize that the visitors to this site are the patients (& family members) that are doing their own research. The reason I have posted this is because of Terry's comments about a majority of men not being knowlegeable about their disease. Of course, I understand that it is these same men that are not on this site to read it.
Re: Informed choices & personal responsibility (Correcting my mistake)
Correction: In my last post, I meant to say the following: 1) “That being said, the patient also has a responsibility to himself to do his own research regarding PROSTATE cancer so that he is not subject to the potential bias of his doctor, and 2) “The reason I have posted this is because of Terry's comments about a majority of men not being knowledgeable about THE disease”. (The original sentences inaccurately used the words “his cancer” and “their disease”).
The changes are in upper case lettering. Obviously, at the point where the patient needs to make an informed choice regarding screening, he does not know if he has PCa, and as Terry pointed out, in many cases it turns out that he does not.
Sorry, I should have done a better job of proofing my copy.
I disagree with very little of what you say, although I think you may be a little hard on men who have lived their lives believing in the ability of doctors to diagnose and treat all diseases, even complex ones like prostate cancer. But how can a man make an 'informed choice' when there is so much information that clashes - from people who appear to be well informed themselves?
That aside, it is gratifying that I now get almost a quarter of a million visits to this site, so hopefully a number of thise visitors find it useful and helpful. But what of the majority of men - the men who have no computer skills, who can't even begin to search the Internet. Those are the men I'd really like to help.
I say they are the majority because, according to the latest published figures, half of the men diagnosed in the US were over the age of 67 (which is the median age for diagnosis in the US - it is slightly older in other countries). Interestingly enough, the median age for men posting their stories on this site is 57, a full ten years younger than the median age for diagnosis. The majority of older men who are diagnosed simply do not know one end of a computer from another and cannot access this site - or any other, so they find it very much more difficult to 'be informed.'
I have done what I can to publicise my booklet A Strange Place and have distributed (at no cost) more than 700 copies of that to men who cannot download the booklet from this site. But that is only a drop in the ocean. How to get the word out that help is available?
The large Support Organisations have no interest; I have tried to get men to come aboard and advertise in their local newspapers; I have looked at using print on demand facilities; I just can't find a way of telling these men and thier supporters that there is a useful tool in becoming more informed.
Does anyone have any ideas on how this can be done - bearing in mind that it is no good using anyone like Amazon or any other Internet facility?
I know many men that are very computer literate and know very little about prostate cancer, as was I. I feel doctors especially urologist need to know more. I also think it is incumbent on people like us to be open and willing to talk to others. Many men are hesitant to talk about their bodily functions which limits the exchange of knowledge. After having a prostatectomy I lost a lot of my modesty and inhibitions. I am willing to talk about a lot of personal things (much to my wife's chagrin). I hope I can be a good emissary and assist with the plethora confusing and conflicting information.
Re: Informed choices & personal responsibility (older men & internet usage)
Terry,
I am not sure that there is anything more you can do, but that being said, you do far more than most and should feel good about that. (I know that you aren’t fishing for compliments, but I am still amazed at your dedication to this site in the form of the number of times that you personally reply to someone’s post and how quickly you get that reply out).
As far as the computer illiterate older population is concerned, internet usage figures are changing for the better. According to one website, 45% of Americans age 70-75 used the internet in 2008 & that was up from a measly 26% in 2005. So, that is encouraging.
Still, that means, as of four years ago, 55% of that age group did not go online, which brings to mind the old saying: “You can lead a horse to water, but you can’t make him drink.” Was I being “a little hard” on these men that don’t take advantage of online resources? Maybe, (although it was not my intention), but these men would have to be living in a cave not to at least be aware of the ability to obtain information using the internet. So IMO, for many, it is a case of being stubborn & set in their ways and they suffer the consequences of their inaction as a result. In a way, it as a form of Darwinism in that those who fail to evolve do not do well (or as well) in the long run.
On the positive side, this should not be an issue with the next generation (and hopefully it will be a whole new world as far as Pca screening & treatment is concerned as well).
The comments also show how studies can be misleading. At first sight there seems to be a reasonable level of support for AS, then when the detail is considered, it is found that the substantial majority of urologists did not participate in the study. It would not be too difficult to guess at their views.
There are none so blind as those who will not see, and none so deaf as those who will not hear. But then again how closely would you listen if your livelihood was threatened?
Re: Informed choices & personal responsibility (older men & internet usage)
Gentlemen: I have read all your comments and observations twice, however nowhere do I find the word "litigation". U.S. doctors, but more importantly researchers and drug companies fear attorneys as they are easy prey to large law suits. Doctors adhere closely to prescribed policies and procedures concerning a disease as to limit their liability should a suit occur.
Active surveillance may also fall in this category depending on the stage of the cancer, Gleason, etc.
