This forum is for the discussion of anything to do with Prostate Cancer. There are only four rules:
No fundraisers, no commercials (although it is OK to recommend choices of treatment or medical people based on your personal research; invitations to participate in third-party surveys are also acceptable, provided there is no compensation to YANA);
No harvesting e-mail addresses for Spam;
No insults or flaming - be polite and respectful at all times and understand that there may be a variety of points of view, all of which may have some validity;
Opinions are OK, but please provide as much factual evidence as possible for any assertions that you are making
Failure to abide by these simple rules will result in the immediate and permanent suspension of your posting privileges.
Since this is an International Forum, please specify your location in your post.
A friend of mine passed away this month. He had the same uro-onc surgeon as I and was treated with EBRT about 18 yrs ago. We were at a church work camp 6-7 yrs ago when I told him I had been diagnosed with PC and was going to do the EBRT thing. He said "don't do it". About 8 yrs after his treatment (same rad center), he was diagnosed with bladder cancer & had already lost one kidney. The bladder cancer was thought to be a result of the EBRT. Ten years ago, our uro-onc removed his bladder. He had ten good years before his remaining kidney failed. Like if you don't treat the PC, it may cause kidney failure. If you treat the PC with EBRT, it may cause kidney failure. I was the lucky one, my bladder became non-functional within 5 yrs after EBRT, and was removed before the kidneys were damaged.
Sometimes I wonder if the choices we make have any bearing on the outcome,
I also have a friend who got bladder cancer, likely from EBRT, 8 years after treatment. He was fortunate, it was detected early after he was passing blood in urine. Four years after minor surgery, he remains bladder cancer free. I read somewhere that the bladder cancer likely caused by radiation can occur up to 10 years post treatment.
Add me to the guys who got BC after EBRT for PCa. One interesting point to add: when I recently had my remaining bit of urethra scraped and cauterised (to deal with PCa spread there) the Urologist reported radiation damage to the (prostate) end of the urethra. When I had the bladder out that also had shown radiation damage. EBRT is a bit of a blunt instrument and however carefully they focus the rays, some spread where they shouldn't. But as a Gleason 9 case with a big PSA number at diagnosis, I had to take the treatment route I did and until a better option is invented, I'd still advise it for cases like mine, despite the risks.
But hey, still going strong after six years and expect to clock up at least ten, so I keep smiling, just like Terry.
I also knew the friend of yours who recently died, and always thought very highly of him and his warm and upbeat spirit. Which he kept steady through difficult times.
Another friend of mine died of prostate cancer about 6 months ago. He got the very same diagnosis as I, from the very same urologist, he perhaps two years earlier than I. He chose a series of alternative medicine regimens, but his prostate got problematic enough to block his urine output, requiring emergency treatment for that. Thereafter he did a full EBRT treatment for his prostate cancer, then was on Lupron in the last few years. He lived quite fully right up to the end. Even making a trip overseas, returning only about 2 weeks before he died.
But his initial choice contrasts rather sharply with mine. I got timely treatment (surgery then adjuvant radiation) and feel completely healthy now, with an undetectable PSA. Of course neither I nor any of us can know what awaits in the future. But I think the choices we make do have big consequences.
It is interesting to see how the wheel has turned on the subject of secondary tumours - especially bladder cancers - after radiation therapy. For many years men were told that apart from the immediately apprent 'collateral damage' that might arise from poorly aimed or focussed beams, there was simply no evidence of any long term negative consequences.
Of course the term 'no evidence' can mean in scientific terms that there is no evidence because we haven't looked for it. And it became apprent as time went by and more and more men communicated with each other on the Internet that there mwas indeed 'evidence. This was dismissied of course as anecdotal and of little value, but in the end, studies were done and - Hey! there were signifcant numbers of men who suffered negative consequences.
There is no doubt in my mind that isolation of the past, where any man who had a negative consequence to any kind of therapy was told that his case was unusual, has gone forever. That is why I believe it is so important for ALL of us prostate cancer men to share our stories - the good and the bad - and update them. That way men who come behind us will gain a far better understanding of some of the aspects of diagnosis and treatment of which they may be unaware.
If any of you reading this haven't told your story - come along and JOIN US
I asked the head of my HMO Uro Dept if they had taken the time to analyse the data in their records with respect to cases like mine. The response was "That is a very good question."
There is a large amount of data in my HMO records.
For most of the 5-6 years of my experience, I was under the impression that mine was an unusual case. It has always been on my mind that how come in such a large organization, my friend & I living 40 miles apart had such similar problems, treated by the same doctor. As Terry & others have pointed out, these cases are not unusual and may be closer to the norm than our doc's are willing to admit.
"That is a very good question" has a reassuring sound, but doesn't appear to answer the question you asked. I hope your question results in someone actually going through the historical record and coming up with some constructive information.