Why men need to be educated

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Purgatory
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   Posted 3/27/2011 6:19 PM (GMT -6)   
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

coxjajb
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Date Joined Nov 2008
Total Posts : 184
   Posted 3/27/2011 6:51 PM (GMT -6)   
David, I know what you mean. I have a friend at church like your neighbor. He does not know his PSA, Stage or Gleason score. He was treated with radiation but said his first follow-up PSA would be one year. That seemed odd to me but I'm not a doctor. confused

Post Edited (coxjajb) : 3/28/2011 4:46:05 PM (GMT-6)


Sephie
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   Posted 3/27/2011 6:52 PM (GMT -6)   
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."

compiler
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   Posted 3/27/2011 7:03 PM (GMT -6)   
sAME SITUATION with a fellow University professor.
 
Isn't it amazing that even highly educated intelligent men just don't ask.
 
Perhaps fear or maybe just the adage of listening to the doctor and that's it.
 
Mel

goodlife
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   Posted 3/27/2011 7:16 PM (GMT -6)   
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

F8
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   Posted 3/27/2011 7:34 PM (GMT -6)   
Goodlife -- the people that i know who obssess on their illnesses are generally a pretty miserable lot.  when a newcomer pulls up here the first thing we do is recommend a list of boring and very scary books that he absolutely has to read.
 
i've got a confession to make:  i haven't read any of them and i don't plan.
 
most people who have the wherewithal place themselves in competent hands and don't sweat all the details, and i'll bet they fare on par with the guys who torture themselves will all the minutae or maybe even better.
 
every single guy i know who has or has had PC doesn't really want to talk that much and they either don't know or pretend they don't know PSA scores, gleason etc.
 
i find myself here every day, and that's not always a good thing for me.
 
ed
 
 
age: 56
PSA on 12/09: 6.8
gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10
2/8/11 PSA <.1, T= 6 ng/dl

tatt2man
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Date Joined Jan 2010
Total Posts : 2842
   Posted 3/27/2011 7:49 PM (GMT -6)   
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....
Age:55 -gay with spouse of 14 years, Steve -Peterborough, Ontario, Canada
PSA:10/06/09 3.86
Biopsy:10/16/09- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy:11/18/09
Pathology:pT3a -Gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
PSA:04/08/10 -0.05 -Zero Club
PSA:09/23/10 -0.05 -Zero Club
PSA:03/24/11 -0.02 -Zero Club
PSA:03/24/12- TBA

logoslidat
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   Posted 3/27/2011 7:54 PM (GMT -6)   
There was a movie, called " Charly " in the late 60's, based on a fictional short story, called " Flowers for Algernon ". Cliff Robertson and Claire Bloom starred, that dealt specifically with this dilemma . quick synopsis. Charly is an adult, with mental retardation, who is childlike and " happy ". With the help, of a medical scientist [ Claire Bloom ] receives
a treatment which over a period of time transforms him into a genius. Unfortunately the transformation has a half life. Using his genius, he does everything in is power to remain at this new level. Alas, to no avail. Though the ending is sad. I still remember the last scene, where he is swinging on a swing set with 7 and 8 year olds, with a beautifull smile, in obvious bliss.....
Diagnosed 8/14/09 psa 8.1 66,now 67
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash, Bruce Dalkin,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough 18 mos, squirt @ running. psa std test reported on paper as 0.0 as of 12/14/10 ed improving

Postop
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Date Joined Feb 2010
Total Posts : 385
   Posted 3/27/2011 7:54 PM (GMT -6)   
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.

logoslidat
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Date Joined Sep 2009
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   Posted 3/27/2011 8:06 PM (GMT -6)   
Wikipedia has an excellent report on many aspects of Charly. Dont think this is a hijack, as it seems to relate in a thoughtful way to the thrust of topic.
Diagnosed 8/14/09 psa 8.1 66,now 67
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash, Bruce Dalkin,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough 18 mos, squirt @ running. psa std test reported on paper as 0.0 as of 12/14/10 ed improving

Purgatory
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Date Joined Oct 2008
Total Posts : 25380
   Posted 3/27/2011 9:01 PM (GMT -6)   
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)


Squirm
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   Posted 3/27/2011 9:10 PM (GMT -6)   
I have found there are different ways some men want to deal with their Dx. For example, a friend's father remains very very quiet about his case. Never wants to discuss it with his family. My dad was basically the same, although I have belief that if I knew then what I know now, he'd be much more about to discuss it - sucks, but what can I do. I do know some others who openly talk about it.

Overall, good point David, and I agree with you.

Squirm
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   Posted 3/27/2011 9:15 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.

Purgatory
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Date Joined Oct 2008
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   Posted 3/27/2011 9:19 PM (GMT -6)   
Very good point and advice, Squirm, thanks
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 3/27/2011 10:01 PM (GMT -6)   
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.

Tim G
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   Posted 3/27/2011 10:30 PM (GMT -6)   
Your neighbor's doctor doesn't like to talk and his wife is mad at him for getting cancer. Holy Smokes, am I ever glad I ain't him!

Purgatory
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Date Joined Oct 2008
Total Posts : 25380
   Posted 3/27/2011 10:40 PM (GMT -6)   
And he truly is a nice, kind man and has been a great neighbor the past 5 plus years.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

Sephie
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   Posted 3/28/2011 5:06 AM (GMT -6)   
David, I cant' believe that your neighbor's wife is mad at him because he got cancer again! A while ago I read a post on another forum about breast cancer...you know what the single biggest risk for breast cancer is? Having breasts! The same goes for prostate cancer.

Goodlife, I know what you mean...there is something in the old adage "ignorance is bliss." Sometimes all this knowledge we have rattles around in the attic of our mind and wrecks havoc...kind of like squirrels. I often wonder what life would have been like for me the past 3 years if I had chosen not to research PCa on the Internet, had chosen to not participate in this forum, and instead chose to take what the surgeon said at face value and just live my life. Sometimes this sounds like a very nice dream to me.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0, September 2010 0.0.

Purgatory
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Total Posts : 25380
   Posted 3/28/2011 7:28 AM (GMT -6)   
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
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

clocknut
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   Posted 3/28/2011 7:41 AM (GMT -6)   
I say thank God for wives. In the last month or two I've met two men, both very well educated...educators in fact....who knew virtually nothing about their cancers or their treatments. They didn't know their PSA's or their Gleason scores or other basic information, but would say, "Ask my wife, she knows all that stuff." I don't know if it's an avoidance mechanism, or if it's simply that they've always deferred the responsibility of health decisions to their wives, but it surprises me every time I run into it. I'll admit that there have been times in my life when my attitude was, "What I don't know won't hurt me," but I'm now very well aware how foolish that attitude can be.
Age 65
Dx in June 2010.
PSA gradually rising for 3 years to 6.2
Biopsy confirmed cancer in 6 of 12 cores, all on left side
Gleason 7 (3 + 4)
Bone scan, CT scan, rib x-rays negative.
DaVinci 8/20/10
Negative margins; negative seminal vesicles
5 brothers, ages 52-67 ; I'm the only one with PCa
Continence OK after 7 weeks. ED continues.
PSA 1/3/10: 0.01

Casey59
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   Posted 3/28/2011 8:13 AM (GMT -6)   
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."


Julietinthewoods
Regular Member


Date Joined Sep 2010
Total Posts : 309
   Posted 3/28/2011 8:24 AM (GMT -6)   
Maybe his wife is just mad at the cancer, not him. Let's hope so.

Anyway, I think there is a fine line between being armed with the information you need to proceed, and obsessing. I don't intend to cross it, for the sake of my mental health! But I have never understood the folks who face major medical decisions with no knowledge. I would never just hand my health over to a medical professional and give him or her carte blanche to treat me.

I research all major purchases, vacation destinations, etc. Maybe I'm just an information junkie!

Hope all goes well for him, David!!

Juliet

Ziggy9
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   Posted 3/28/2011 9:09 AM (GMT -6)   
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.

142
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   Posted 3/28/2011 9:53 AM (GMT -6)   
I've probably mentioned that my uro was visibly surprised that I asked as many questions as I did. He had no problems with it, and allowed more time at the following appointments (which we always used).
 
And all that based on what I had gleaned from a list of questions I found on another site. Imagine what happened when I had been given a copy of the Walsh book by a nurse I know and the biopsy report.
 
But looking back, even after surgery was done, and RT scheduled, I didn't know half the right things to ask, compared to what we load people up with here on their first post.
 
At my support group, there is someone new virtually every month who is already scheduled for treatment of some sort, but has no clue what the biopsy results were.
 
So all that considered, nothing surprises me anymore.
 
That was why I was impressed by the "Sleeping Dogs" book from Australia. Anything even similar to that, handed out at my first uro visit, would have been incredibly eye-opening, regardless of the motives behind writing it.

logoslidat
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   Posted 3/28/2011 9:57 AM (GMT -6)   
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 "
Diagnosed 8/14/09 psa 8.1 66,now 67
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash, Bruce Dalkin,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough 18 mos, squirt @ running. psa std test reported on paper as 0.0 as of 12/14/10 ed improving
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