Salvage Guys, some really good information

Thanks David, that really is a great piece of work. As a Gleason 9, I am just waiting for the other shoe to drop, yet, I can't bring myself to do adjuvant radiation, even tho I know the facts are with we.

If I really could look forward to a median of 6 years before I see a rise, I would be tickled pink. Obvioulsy, as you stated, many of our brothers here have not been so median.

My surgeon from Cleveland Clinic recently looked surprised when I asked him about adjuvant therapy. He said some of that is based on older thinking. Many oncologists are saying that waiting until PSA does rise is a better approach.

Sometimes I get so darned confused. This study seems to back up what he said, whereas there are many others that don't.

Thanks again. Good luck on your journey !

David, had seen and read this article before, a lot of good information, but a bit depressing too when one can be looking at a 50% chance of the salvage radiation working. Even the latest Rad. Oncol. I met with said that was about the odds at best.

David in SC

David 131 Although it seems like there is a large percentage of people getting a reoccurance you have to take in account that a lot of people that do not have a reoccurance do not bother (or want to forget about there cancer) to carry on posting once they get there zero's and in theory do not have to much to say where as the people with problems need more help and advice so post more often which can be misleading

I would be very interested to know how many people have signed up to this forum and how many regular posters there are now

I think you're right, Squirm. Those with possible or actual recurrence are more likely to "stay in the game."

I think the odds are still good for a "cure" for most patients.

Barry

Colin45 and Squirm: Take a look at the 'where are we from' thread ---- the list goes back into the mists of time. By definition, if PCa isn't a problem then a support group is about as useful as a bicycle is to a fish.

When first diagnosed, panic.

Then, the treatment decision --- not an easy time.

Then THE DAY --- treatment arrives. Major stress.

Now, the frightening wait for pathology, if surgery was elected.

Next, piddling all over the carpet --- not an easy time.

Then the realization that not only has Willie gone into hiding (bad locker room image) but may be brain dead. Not nice!

Then the trauma of the first PSA, and perhaps the next.

And, by now, for most, fewer pads, a zero PSA, a Willie that can work in a pinch, and that's better than a stiffy in a pine box, so we live with it.

And the cat has kittens, the car has to go in for servicing, there's a big project at work, your brother with "THAT" wife is coming to stay for a week, Costco beckons, your grandchildren want to go to McDonalds, and first thing you know, life has reared it's ugly head and you've gone for hours without thinking about PCa and when you are drifting off to sleep you suddenly remember you meant to get to the prostate group to say hello --- but it will have to be tomorrow.

For some tough, the PSA doesn't behave, the pipe plugs, Willie won't wake up, and it's still a fresh pad every couple of hours ---- major need of support.

And that, I bet, is the story of this group. The lucky guys mean to stick around and be supportive --- but season tickets to football, cleaning the garage, dinner out with friends, shopping with the wife, all and more overwhelm good intentions.

Case in point: I had my first doctor meeting post surgery this morning ---- boring! Nothing to report. Nada. Same old, same old. I'm not even bothering to post about it. No support needed. BUT if my next PSA is up you can bet your last dollar I'll be here hourly, just like I used to be.

Sheldon AKA Sleepless

I think I agree with the above posts that argue that this, or any, forum is probably not representative of a good cross-section of all those that have been treated. I was one of the fortunate (few? many?) that had low numbers and early detection. Whenever I look at the various nomographs, I am told that I have almost nothing to be concerned about. When I come back to HW and read about those of you whose battles continue, and that seems to be a pretty high percentage, I get the feeling that something doesn't add up. My take on the answer is that this group of really great folks doesn't statistically represent all those who have been treated for PCa but is weighed pretty heavily in favor of those who needed follow-up treatment or who had more advanced cases to begin with. When I go back in time in the posts, I see a lot of names that I don't recognize and I think they are folks like me where the initial treatment did the job and they are no longer active.

Sounds pretty cold and I don't mean it that way! This group performs an absolutely vital function for those going thru the battle. I was logged in almost constantly when I first started the process and the answers I and others got were invaluable to me in making my treatment decisions with my Uro. I am no longer nearly as active, mostly checking in to follow the progress of those who helped me (hang tough, Purg) and to add an occasional thought or comment that might help someone else.

So, does this change the value of this group? Not a bit! It's still one of the best places for those of us newly diagnosed or going thru the battle to gather for good fellowship and advice. Does it accurately represent all of those treated for PCa? Probably not. Fact is, most treated for PCa probably never made it to this forum and that's too bad IMHO because they would've found it an great place to join.

Keep up the Good Work and best of luck to those whose battles continue!

Garth

Garth, good to hear from you. Many of your points are valid, in the bigger picture of things, we are a small group. Wouldn't want someone's total view of PC being based on our stats and troubles. Glad you are doing ok, the best thing is never to even know about this place, let alone have to join it, but once here, as you know, its a great and comforting place to be.

Not planning on giving up anytime soon, too mean a buzzard here. Just getting ready to get into the next battle, salvage radiation.

Hope your numbers stay that way for many years to come, my friend.

Keep us posted from time to time.

David in SC

Just a note:
I am approaching my 3rd year here. I have seen probably a couple thousand come through HW. The vast majority are done after initial treatment and only return with PSA updates if at all. I have seen some go away and return much later with reoccurance, but luckily very few. That vast majority of those who stay here and continue posting, like myself, usually have more advanced cases or continuing side effects. And with continuing treatment for these things this has been a great haven for discussion. Those who stayed that did not have advanced cases or continuing side effects have been here with warm and open hearts helping others...pretty amazing stuff if you ask me...

David,
I fully understand the feeling that 50% is better than nothing. I decided on adjuvant therapies rather than awaiting for relapse to take steps in hopes of gaining another 11% improvement in odds over salvage therapies. When you think about it, that's just 1 in ten guys who fared better. But it was the best I could hope for...

Tony

It's difficult to talk about reoccurrances without looking at one's primary stats. If there are 25% reoccurrances after surgery and Gleason 6 has a 5% reoccurrance rate then we have to assume that most all reoccurrances are G7 and above. There are three possible reasons for a reoccurrance: The PC is systemic and has already escaped the prostate and the bed and is in the bloodstream at the time of treatment. The surgery failed to remove all of the prostate tissue; this is common, and some PC cells are still in the left behind tissue. PC cells have entered the prostate bed and the surgical margin didn't get them.
Squirm, I tend to agree with your line of thinking that radiaton would do a better job of klling cells at the margins as radiaton has a 15mm margin and also kills any PC cells left in the hard to remove prostate tissue.
JT

Well said...

Tony

Squirm...I hadn't heard that the "success" rates were that much different. I understood it was more a matter of which method is the best for the patient i.e. depending on the age, gleason and PSA numbers. At least that is what my original doc said. Also there are two types of radiation treatments used as primary treatment. Internal and external. I think the only reason for pressing surgery would be is if the person can handle it, a more accurate staging and pathology could be done, which also helps in the prognosis of the disease. Otherwise, I heard outcomes were all about the same with only the side effects being slightly different. Learning something new all the time.

John, I am starting to believe good old fashioned luck has become a factor in all the many variations and differences we men react to with PC and its treatments and for sure, its side effects.