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Two paragraphs in particular make, I think, important points:
I would like to think that treatment is driven by research, but I’m not convinced of that. If it was, then comparative studies looking at longevity and quality of life would be more vigorously investigated. …… There’s an old Arabic saying, “If you want to know how well the medicine works, don’t ask the doctor, ask the patient.” To paraphrase this wise thought, if the medical community wants to know what’s important to address in prostate cancer research …… involve those of us whose lives have been changed by cancer.
2. Unfortunately, what I find tragic today is that most men facing treatment for prostate cancer are just as confused as I was seven years ago. Asking patients to choose the intervention that will have consequences effecting the quality and length of their lives is often a cop-out for the medical community. Patient involvement doesn’t negate physician responsibility for the decision. Nor should research be confined to the easier, cleaner approaches of studying any form of cancer. Unlike pure research, our lives are messy, so there needs to be a bridge between the two. I often wonder if anyone in the medical community is listening.
Mike Scott makes a similar point in a post to the thread A speculative jeremiad when he says in conclusion:
Until people are well enough informed to be able to understand the real distinctions between true illness and biological findings, we don't have a hope of making good health and medical decisions any more. The commercial health care world is premised on the idea that finding abnormalities and treating them as if they are illnesses is meritorious. Many, many people subscribe to this premise, which is why they rush off to have things like whole body scans or they get their entire genome mapped, despite the fact these concepts have little real medical merit, and few physicians would actually recommend either of these actions for the vast majority of patients.
Is it really so difficult to inform people more clearly – or is it in the interests of those with financial interests to keep the confusion reigning? Can we as a group, defined by our diagnoses, help to create a situation where those who follow us are served better and gain a better understanding of heir position before making what is an irrevocable decision?
Aloha,
I had a short span of trying to address this problem. I'm afraid that after thinking about it, I gave up. The problem, getting information to the man, after prostate cancer diagnosis is impossible without the help of the medical community. In all my visits to my HMO for appointments, I've only been next to a man, going for a biopsy (different island)one time. And he was only headed for a prostate biopsy. I did not feel it appropriate to say anything at this point. There is appropriate literature lining the walls and tables as you exit the clinic, including the "US TOO" pamphlets.
How do you get information to men that have been just diagnosed? How do you find out who has been told they have PCa?
It boils down to the man. As in my case, no one took me aside and said "Joe, it is like this, you will suffer from side affects ...." Would I have listen to anyone else. My first introduction to the information available was the internet. This can be very confusing. It took a while to find web pages like yananow.net and that was after the treatment was completed.
Joe
As usual Terry is on the cutting edge, the information this site provides was instrumental in my decision process. It seems until the effects and causes of this disease are better understood we are only making best guesses on how to proceed. Thank you Terry for your relentless pursuit of the truth and for providing the knowledge that has given us at least some intelligence when we attempt to treat this disease.
