Why men need to be educated

I had posted a thread earlier in the week about my next door neighbor getting a PC dx recently.  Only this afternoon did I get a chance to talk to him at length.

I am not saying this as a put down to the guy, hes a good neighbor and highly educated in general.

He does not know his PSA score that got his GP to send him to a urologist.  Does not have a copy of his biopsy report.  Does not know the Gleason score, doesn't know staging, only knew he had 4 of 8 positive cores.

I asked him to get a copy of his biopsy report for starters, and we could sit down and go through it together.  He's suppose to meet with his urologist in a week, and I said I will give him a list of basic questions to ask, as he warned me that his doctor is one of these that doesn't like to talk.

Told him once he had some more info, we could spend some time going over it all, and I could give him a lay patient's opinion.  Like me, he has had past major surgeries and past radiation from other cancers, and a lot of scar damage.  His uro seems to think that surgery might not be a good solution.

He said his wife was acting angry at him for getting cancer again.  Geez, poor guy.

Will report back, when he's had a chance to get some of his data.  We got to keep educating men, that's the key to the whole thing.

David in SC

David, I'm not too surprised by your post. I know a couple of guys who were diagnosed after John and they too knew little about their disease. A couple of them had surgery and hadn't seen their pathology report...the surgeon gave them the highlights and that was it. No final staging, no final Gleason, just an assurance from the surgeon that everything was "fine."

While I obviously agree with your premise, but there are times when I am envious of men like your neighbor.

Because I am "educated", I know pretty much exactly what every .01 increase in PSA means and I sweat about it. I know what my odds are of going 5 or 10 years without BCR. I know the odds of SRT being successful, I know that Hrt is not a fun trip, and just in general, I pretty much can plot out my future.

This knowledge puts us into periods of depression at times.

Just imagine if we could be naive, believing everything the doctor said, and going to the treatments that we were told to, taking the pills we are told to, and all the time optimistic that we were going to be fine, just like the doctor said.

The bad stuff would just kind of sneak up on us. As it is, we are looking years out at the bad stuff. Heck, we hear guys who have gone 20 years with stats worse than ours, but assume we have a few years left because of a study we read.

Yeah, sometimes I think we know too much ............

Goodlife

a subtitle to this topic could be:

why doctors need to be educated

which may make it easier for men to ask questions and get the answers they need....

I think the biggest reason to be educated is that prostate cancer treatment can be so difficult, and has such significant possible side effects. You should know what you are getting into.

On the other hand, being educated probably has less effect on how your prostate cancer does long term, because there are several treatment approaches that work about the same. The main determinate of how your cancer does is how bad it is when it is diagnosed: Gleason score and evidence of spread. That will tell you the odds of it coming back, and how soon. Some people don't want to know that. I can understand.

The fear in my neighbor's eyes and voice alone, is why I stay on here. The only difference, is this man lives 50 feet from me and I see him several times a week. He's even retired from a similar profession to mine. He also has been through one medical hell after the other.

He didn't even know that his PSA was being checked, or why. My only motivation is to share a fraction of what I had to learn through the "School of Hard Knocks".

======================

goodlife:  i see your point, but if i had to choose between knowing or not knowing, i would rather always know, then at least i know what i am up against, what i am battling, what my options are, etc.

f8/Ed - then why are you here everyday if you feel that way.  There must be some reason that you come.  Perhaps I didn't understand what you meant.

As a general statement, its considered a fact that most men don't take pro-active roles in their own health issues, I know its a bit of a generalization, but still true as a rule.  How few of us knew anything about PC or even what our prostates did prior to having a PC dx?  I sure didn't.  Never have given it a thought in my entire lifetime prior.

David

Post Edited (Purgatory) : 3/27/2011 9:07:11 PM (GMT-6)

Speaking of cancer, testicular cancer is one thing us men can benefit from easily checking. We have the advantage of being able to very easily feel for any abnormalities. I also always tell my wife to do breast check, and it's also important to observe the skin, check moles, etc for any signs of skin cancer.

Funny, I had mentioned in a recent thread Tr RT & HT combined:

"*I'm thinking that the vast majority of the 2 million+ men with pca in the US simply do what the Dr says, without much further inquiry, period".

I mean, this site has to be among the most visited, and has under 100k registered members.. and there are 2 million in the US alone with pca.

I dont think it's fair to qualify the awareness level as good or bad. Some resolve that dr knows best, period, and there is no reason for them to become more involved in the decision making.

My 1st uro on the otherhand, basically left it as "only you can make this decision as to what to do next".. would even give me an "if I were in your shoes".

With pca especially, it lends itself to more patient involvmrnt in treatment decisions than other cancers may. There often is no easy answer, certainly not alot of absoute "right" or "wrong" ones. We only get to keep score as a decade+ or so passes.

In my case, I dont see it as obsessing. I consider it MY obligation to myself and my family to know as much as I can about what is best for me.
In fact, there may be a certain aceptance once receives by following pca matters as many of us here do, that those who choose to simply listen to what their doctor says do not get the benefit from.

If im a 78 y/o when they find a G 3+3, might be best to leave it alone.
If im a 43 y/o with that same dx, i'm probably going to choose differently.

And among those 35 years in between those extremes, there are treatments that really should come from my heart, and not from my dr's brain. And if i've relied exdclusively on what my dr had been telling me, shame on me.

And he truly is a nice, kind man and has been a great neighbor the past 5 plus years.

Sephie, you and John are better off for what you do know, not for what you didn't know. Over time, if John keeps doing so well, so much of this should start to fade from you all's minds. Hope he stays right where he is for many years to come.

David

Sounds like we are all in strong agreement with the American Cancer Society's position (read this ACS LINK) about educating men to make an "informed decision" on prostate cancer screening and treatments.  Dr Otis Brawley (head of ACS) says that more often than one might expect, these conversations are not happening...here's yet another case.

I liked how you stated it, David, "We got to keep educating men, that's the key to the whole thing."  If we can keep advocating awareness and education, we can help promote appropriate screening, and likely also help to reduce the over-treatment from uninformed over-reaction.  As I've said before, "we need to aggressively treat those that need aggressive treatment, and not aggressively treat those that don't need aggressive treatment," and only through education can men understand the differences.

Nice of you to help your neighbor...likely you are "paying it forward."

I asked the original urologist who diagnosed my PCa "how long would I have if I did nothing." He then went on and on how no one had ever asked him that before. True he was a younger doctor in his mid 30s I'd guess but I still found his statement hard to believe. After reading this thread maybe he was telling the truth.

When I first arrived here at HW there was a poster who kept saying MD does not stand for medical deity. There are still too many people who rather opt for childlike faith in their doctors then be skeptical and a true advocate for their future lives.

I,m of the belief that 99% of the folks on this site are like Charly who in his highly intelligent state used every ounce of his being to stop the decline backwards ,that he knew was coming. We all, at times ponder and/or flirt with an easy way out, looking for bliss. That, those who choose not to does not in any way make us or them any better, than anyone. We are all here together trying to do be Pono. Loosely translated as ' do the right thing "