Just an observation

I’m going to try and say this as carefully as I can in an attempt to be helpful to some and not offend others! Perhaps the moderators can noodle on it.

An honest observation as a newbie, DEFINITELY NOT a criticism... my God, you guys already saved my sanity and more and I know that one day (hopefully a long way away) you’ll probably be saving my bacon too.

The forum is somewhat naturally populated people who are struggling with one or more aspects of the journey, from funky PSA results and onwards, many here (whose bravery continually inspires me) are dealing with recurrence, high Gleason scores, metastases and more.

What I think I notice is that this slants the population here to folks who are tending to count success in single digits (years). As a dumb newbie this crude ‘meta analysis’ of signatures sent me into a bit of a tail-spin because (at age 50) I was shocked to think this disease can rob such a high proportion people of life in so few years. Of course it is self selecting; those who are experiencing very high levels of success over extended periods, the ‘cured’, don’t have much motivation to post here and tell their stories.

This concern led me to the American Cancer Society Website page on survival rates:

http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-survival-rates

This (presumably credible) page appears to paint a very balanced overview of mortality rates that demonstrate that the vast majority of folks will live long and (hopefully) happy lives. All the folks here speak to this of course when they post, but the signatures are SCARY!

I just wonder if the top sticky here could be “Welcome: here are the ACS numbers, be very hopeful, now read on…” or something like that… I had to go find these numbers to help me balance my impressions.

Just an observation, guessing that if it scared the crap out of me, it may have scared others. Please don’t flame if I ‘don’t understand’, maybe this too is part of my journey.

Paul65

Paul, in addition to what 142 said, I'll just say that there are still lots of folks on this site who have been successfully treated and living great lives with minimal or no side effects. Just look at me, or Yooper or Ziggy9 or JohnT or TallAllen or many, many others. We were treated years ago and "stick around" to help folks with both support and facts about our disease.

So, stay off that ledge and recognize that while this is certainly not "a good cancer" it is one that can often be successfully treated and still leave men with productive and active lifestyles.

Jim

Well I read that thread and couldn't see a clear and easy to digest concatenation of credible published mortality rates. I'm happy to turn my meager brain to identifying some of that information and summarizing it in an easy to digest form!

On it... gimme a day or three. I will post in this thread for peer review and then folks can decide what to do with it.

Absolutely fair point Wilderness...

If folks here have suggestions for credible references, please add to this thread or email me and I will try and assimilate!

I will second the thoughts of the original post.

Before I understood anything about PCA the member signatures were very worrisome. Coupled with the propensity to post active conditions and treatments it scared the heck out of me as a newbie.

It all makes perfect sense now but if there was a way to alert the new members somehow I'm sure it would have helped my anxiety level the first few times I visited.

Jon

Pauls point is well taken. I too was concerned about what i read here, early on in my trip to PCa treatment. It took me a while, and i think i might have raised the point somewhere along the way, but i finally realized, that the population here is not typical, as the vast majority of "cured", (if i may use the c word) folks, have moved on.

So if Paul can come up with a way to immediately assauge the fears of newbies that show up here, without offering a false sense of security, i think it would be worth considering, even as a Stickie by itself.

suzhtz's comment echos the important words of Dr Willett Whitmore, and points out that we need to keep both in mind. Again...

...there are "good prostate cancers" and "bad prostate cancers."



Prostate cancer is probably not just those two cases; rather, it is a spectrum of diseases. In contemporary studies, 70% of newly diagnosed are 3+4 or less, but the challenge for Paul65 will be to delicately address the full spectrum. Unfortunately, today we "label" the relatively smaller percent of cases that are indeed killers with the same "brand" as the much larger group of cases which probably never need anything more than monitoring.

Most of us are just fighting our personal battles however mild or severe that is. But at least once a year, one of our forum members dies and brings this all into perspective.

We just loss one a few months ago and it just reminds you that things can change for the worse.

Knowledge is power and we all just want to help each other stay aware of this disease and don't let anything sneak up and surprise you.

Bill from Florida

Paul, thanks for a thoughtful post. You're right, this is a largely self-selecting group, a very special one. There are many who have had good outcomes and after hanging around for a while, they have moved on with their lives. I'm one who could easily do that, and I'm definitely posting less than I did at first.

That being said, one of our primary functions does seem to be to talk the newbie down off the ledge. And if we're able to do that, and get someone like you to to slow down, breathe, and truly try to understand the options and choices available to them, we've done our jobs.

There have been endless discussions about the overtreatment dilemma, and many threads about what the best approach truly is. Any insights you can bring from your experience will certainly add to the 'sticky' comments for the group as we move forward.

Thanks again for joining us and adding your voice to the forum.

HW is just one more resource.

I tend to come here more for the support.

The "fact gathering" goes, it's just one more resource to be used in conjunction with many many other resources.

I think it is important to remember that the "Average Joe" will ignore and deny even the worst risks he faces in order to keep up the image. The "Man Up" mentality will prevent proper testing and medical care. It did for me, at the beginning. Why test for something I don't even know about?

Many times we do have to indirectly scare the bejesus out of new folks just to get them to stop and think, and realize that this stuff can kill you.

Except for the possibility that I will die from a car wreck or the side effects first, I will die of PCA, not "with PCa"

Thanks guys for the balance in this thread...

You guys did talked me down off the (first) ledge and saved me from something nasty for which I will forever be in your debt. You also helped me see that this is a co-operatve, one has to give back what one takes out. This is me trying to add something that may be helpful to some :o)

I'm currently learning about Confidence Intervals - so you don't have to ;o) Real content to follow...

We Can Do This, Halbert, Clocknut and Tudpock... I have taken to licking your signatures for good luck ;o))))))))

Post Edited (Paul65) : 8/25/2015 7:34:23 PM (GMT-6)