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I do not agree that the medical profesion are soley to blame for many of the problems that occur in the treatment of PCa. There is a tremendous amount of information available both on the web and with support groups. Too many men and their wives are traumatized by the words "you have cancer". These words are usually uttered by the urologist. In many cases he becomes a god like figure and is not questioned. Second opinions are not sought. The newly diagnosed is only interested in getting rid of the cancer and does not worry about living with the side effects afterwards.
Each week I receive more than thirty phone calls and emails from people looking for advice, guidence or just support. In most cases they are concerned with the technical issues of removing the cancer. I try to slow them down and suggest that they speak to others who have undergone the various treatments available here in Israel. In many cases they only want hard clinical facts.
This last week I had two cases which illustrate the above point. Yesterday I had a phone call from a man who received his biopsy results on Sunday evening. He found me thru my website. His words were " You have given me hope. You write about living and coming to terms with the disease.Everything else that I read(in Hebrew) deals with the clinical facts" Within the hour he appeared on my doorstep.I know that he is now taking his time and making contact with the men whose names that I passed on to him.
The second case was a man who underwent RP in 2001. His psa has now reached 0.7. He was told that that he should have RT followed by ADT for two years. He is now getting a second or third opinion, if needed. He might be reading this as I suggested he chechout this site.
The blame should be shared by both the doctors and the patients
Aloha Lenny,
After reading your post, I was out walking, do my best thinking, do you think that your local news paper would host a monthly question & answer session using the experience of your group or friends as a starting point, to explain where they did or did not get guidance during their prostate cancer experience. And begin to let the public know that they are potentially giving up part of their lives just to get the cancer out. I am going to call the Hilo Us Too group leader and discuss this possibility, especially with Terry's booklet so available.
Faith, Hope, & Love,
Joe
Shalom Joe,you have Aloha and we have Shalom-peace
Thanks for your idea. I have problems getting the notice of support group meetings published in local papers. PCa awareness is an on going battle. The health reporter for the second largest newspaper in the country contacts me occainsionally for information. He owes me big time. May be he will buy the idea.
I think there is little value in harping on about the horror stories you have heard in your support group. There are such stories about all of the available treatment options and they are usually associated with medical inexperience or poor choices in picking the person to carry out the treatment.
You are fortunate that you seem to have had a good team to carry out your radiation, but believe me when I say that the effects of a badly guided radiation therapy can be much worse than a bad surgery. Men who have bowel incontinence, a common side effect of bad radiation therapy tell me that men with bladder incontinence don’t know how fortunate they are.
We have over 300 stories on the Yana site from men who have experienced surgery. There are some that relate a poor outcome, but most are positive.
There is no right choice; no one cure fits all as far as prostate cancer is concerned.
TERRY,
I TAKE EXCEPTION TO YOUR COMMENT CONCERNING MY 'HARPING ON HORROR STORIES'. IT IS SIMPLY A MATTER OF MY PERSONAL EXPERIENCE OF DEALING WITH SURGERY VICTIMS.
I HAVE YET TO FIND A SINGLE MAN WHO HAS GONE UNDER THE KNIFE OF HIS FRIENDLY NEIGHBORHOOD UROLOGIST WHO HAS EMERGED UNSCATHED. AS A CASE IN POINT, ALL THREE OF MY COUSINS WHO HAD RADICALS WHEN FIRST QUESTIONED WILL RESPOND WITH THE SAME POSITIVE REACTION TO WHICH YOU REFER. HOWEVER, WHEN THEY ARE PROBED AS TO HOW THEY ARE DOING FOLLOWING CANCER SURGERY IT TAKES BUT A FEW PROBING QUESTIONS TO DETERMINE THAT THEY ARE ALL IMPOTENT, ONE INCONTINENT AND ANOTHER LEAKING AT THE SLIGHTEST STRAIN. DESPITE THEIR LIMITATIONS THEY ALL PUT ON A BRAVE FACE AND CLAIM THEY ARE HAPPY THEY CHOSE TO HAVE THE CANCER CUT OUT. I AM RELUCTANT TO TELL THEM OF MY AMAZING CONDITION FOLLOWING IMRT/ADT, I HAVE NO WISH TO MAKE THEM FEEL BAD ABOUT WHAT I CONSIDER A MEDIEVAL CHOICE.
LIKEWISE, IN MY GROUP THE SURGERY SURVIVORS ARE TO A MAN IN A BAD ERECTILE DIS-FUNCTION STATE.
IF I AM HARPING IT IS BECAUSE, AS I SAID IN MY PIECE ENTITLED 'SEARCHING BLINDLY'[4/15/09] THAT I TRULY BELIEVE THE SAD STATE OF SURGERY VICTIMS IS DUE TO THE ACTIONS OF UROLOGISTS. MY MAJOR COMPLAINT IS THAT IN THE VAST MAJORITY OF CASES, SOME WRITTEN ABOUT ON THIS SITE, THEY FREQUENTLY DEMEAN ANY PROTOCOL OTHER THAN THEIR OWN AND WITH LITTLE OR NO TRAINING PURPORT TO PERFORM 'NERVE SPARING' SURGERY THAT IN NO CASE THAT I HAVE MET HAS BEEN SUCCESSFUL.
I AM CONVINCED THAT SOME HARPING ABOUT THE SAD STATE OF THE MEDICAL PROFESSION RELATIVE TO PROSTATE CARE IS LONG OVERDUE....AND DON'T EVEN GET ME STARTED ON UROLOGISTS AND THE PHARMACEUTICAL INDUSTRY RELATIVE TO HORMONE THERAPY.
Patrick I thought twice about answering your last message. However you are making a general assumption. Over the last 8 years I have been in contact with hundreds if not thousands of men who have undergone RP. In most cases, if it was not for their yearly psa check, they would have forgotten about their surgery.
After surgery (eight years ago)I have slight stress leakage, which does not bother me at all. I figure at the age of 69 the taking off Cialis etc is par for the course.
Bear in mind that most men attending support meetings are there because they have problems. From my experience there are as many problems with the other forms of treatment as there are with RP.
