What do most men know?

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clocknut
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Date Joined Sep 2010
Total Posts : 2679
   Posted 12/12/2010 3:35 PM (GMT -6)   
In the past six months, I've learned a lot more about prostate cancer than I ever thought I would know, or need to know.  I've been PSA tested, biopsied, operated on, and have recovered from surgery, but am still facing my first PSA test at the end of the month.  I visit this site several times a day and have come to see what a terrible disease PCa really is.
 
I happen to work part-time at a local funeral home.  In the two and a half years I've been there, I've helped out at the visitations for several men younger than myself whose families said the cause of their deaths was prostate cancer (they were in their early 60's.
 
Those funerals got me thinking how little I knew about PCa, and finally convinced me to think harder about my rising PSA scores, which had gone from the 3 range to the low 6 range.  My family doctor basically said I absolutely needed to get to a urologist for a DRE and a biopsy, which is what I did. 
 
But the average guy doesn't see death the same way as does someone who helps out at af funeral home.  Death for most of us is  more distant, and I find myself wondering how much the average American male knows about prostate cancer, PSA numbers, and all the other information that becomes so important after being diagnosed.
 
If I were just a 65-year-old guy in good health, prostate cancer wouldn't be on my radar screen.  What I have heard about it has mostly been from television and print journalism, and the reports that I remember generally have told me that the PSA test is unreliable, that it leads to unnecessary worry, that men are being over-diagnosed, and that a high number probably means BPH.  I honestly can't think of a single news report that would lead me to take what I now consider appropriate action to be on guard for prostate cancer. Having a doctor who insisted on an annual PSA test, and having the part-time job where I saw death from the disease is what provided my motivation to have the DRE and eventually the biopsy.
 
If the trend is to do away with routine screening, then it's more than ever incumbent upon each male, working with his family physician, to decide if he needs the PSA test.  Of course, if insurers or Medicare stop paying for routine screening, that complicates the situation further.
 
Sorry about the long post here.  What I'm really wondering is whether anyone has any source that shows what the "average" American male knows about prostate cancer.  I had no idea how ignorant I was.  Are most men equally ignorant? 
 
 
 
 

erbob
Regular Member


Date Joined Jan 2010
Total Posts : 281
   Posted 12/12/2010 4:10 PM (GMT -6)   
Most of my friends (guys) have been made aware of (by me) the importance of getting an annual physical which includes the DRE and the blood test to include PSA testing.
The vast majority know absolutely nothing about PC and seem to care even less. They do pay more attention when I tell them about my having NO symptoms other than a little BPH. Since I am still in excellent health, other than having my little bout with PC, and am going to be hitting the 74 year old mark this coming week, I believe most of the chaps I know figure that I am just an old fart and this stuff has finally just caught up with me. However, I have convinced a few of them of the importance of testing and believe they have listened and will follow through with my suggestion. Your post was certainly NOT too long as it did contain some good information and a gentle reminder that we are all living on borrowed time and should do all we can to "stick around" as long as possible even if includes some Doc sticking the old index finger up where the sun doesn't shine.
Bob, located in Southern Colorado
Retired railroader
Born 1936
Dx Jan 2010, Volume 51.345
Gleason 3+4=7, second opinion 4+3=7 (Don't know which to believe)
Brachytherapy May 26, 2010
No catheters
First PSA three months after seeds 0.12
Doing just fine.

Piano
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Date Joined Apr 2008
Total Posts : 847
   Posted 12/12/2010 4:27 PM (GMT -6)   
I was equally ignorant, and hardly knew even what a prostate was.

I visited my doctor for another somewhat related issue and he suggested the PSA test that led to my PCa diagnosis. I think he also also would normally order a PSA test as part of the blood tests associated with the annual checkup that I now have.

We, the ignorant masses, are at the mercy of our doctors here -- if they believe in routine screening, then we will probably get a PSA test. If not, then we will miss out.

I have advised my brothers that as I have had both colon and prostate cancer, they should get tested. One has done so, but the other chooses to bury his head in the sand and say that it can't happen to him -- and avoids doctors like the plague. Oh well, ignorance is bliss...
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4/12 cores
Non-nerve-sparing RRP 7 March 2008 age 63
Organ confined, neg margins. Gleason downgrade 4+4=8
Fully continent
Bimix worked well; now using just VED
PSA undetectable at first but now 0.3, doubling time 7 months
No radiation but ADT coming unless I can slow down the rise...

Jerry L.
Veteran Member


Date Joined Feb 2010
Total Posts : 3072
   Posted 12/12/2010 5:20 PM (GMT -6)   
Clocknut,

Here’s what the average guy in his 40s thinks about PC:

- He confuses prostrate with prostate.
- He doesn’t know what the prostate does.
- He thinks it happens to older men because 75% of PC cases are in men older than 65.
- He thinks it is usually slow growing. He’s heard that most men will not die from it, but with it.
- He’s heard it said that men will get it if they live long enough.
- He knows that there is a wide range of treatments available if you do get PC, including doing nothing.
- He doesn’t know what the PSA is and it sounds like conflicting information anyways. It’s like everything else – coffee is good for you one day, coffee is bad for you the other.

I believe that improvements are needed across the board:

- The message is not getting out there like it should (look at Breast Cancer Awareness).
- The message is unclear for the average Joe. They are confused.
- The message should include - Young men can get agressive PC.
- Even when they do get the message, they don’t act. There is this mindset that “it won’t happen to me”.

Piano - I have 4 older brothers, 3 have been checked, 1 just won't do it. I simply can't understand this.

I saw somewhere on the Internet about this campaign called, "Save the Males". There needs to be some type of similar marketing strategy to clear up the message and get the word out.

Thanks,
Jerry L.
Nov. 2009 Dx at Age 44
Dec. 2009 DaVinci Robotic Surgery
Jan. 2010 T3b, Gleason 9
Feb. 2010 Adjuvant Radiation

PSA History:
-----------------
Nov. 2009 4.30
Feb. 2010 <.05
May 2010 <.05
Aug. 2010 <.05
Nov. 2010 <.05

Sephie
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Date Joined Jun 2008
Total Posts : 1804
   Posted 12/12/2010 5:32 PM (GMT -6)   
Clock, in my experience (as the wife of a PCa survivor), I have found that younger men (e.g., in their 40s and 50s) see PCa as an "old man's disease."  The few conversations I've had with my nephews (all between the ages of 40 and 50) showed that PCa is just not something they think about.  The same is true for my younger nieces but far more attention has been given to BC and the importance of early and regular screening so the young women I know are definitely more aware than the young men.

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3984
   Posted 12/12/2010 5:48 PM (GMT -6)   
most men know "if you're going to get cancer it's the one to get."
 
ed
 
 
age: 55
PSA on 12/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/12/2010 6:02 PM (GMT -6)   
Jerry,
The "Save the Males" campaign is from ZERO ~ The Project to End Prostate Cancer. It is a political action group in Washington run by Skip Lockwood. I have let them use my story for funding campaigns in congress. I also have a couple "Save the Males" T shirts.

Great summary, too, but I didn't even know half of what you listed a young guy might know. The only thing I knew about it was these words ~ "Prostate Cancer". I had heard of it, but that's pretty much it.

As an advocate I now try to pressure organizations to push for awareness as young as possible. When I was in high school I remember that the girls were separated from the guys and were told about cervical and breast cancer. We guys talked football. I believe that awareness should start right there. and it should be on TV, it should be where we can find it ~ and wouldn't you know it, I see pink at football games and not a word about prostate cancer.

Go figure...

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
RALP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino

Putt
Regular Member


Date Joined Aug 2010
Total Posts : 154
   Posted 12/12/2010 6:04 PM (GMT -6)   
Our Wichita Chapter of UsTOO Int. (PC support organization) set up tables at local Health Fairs and try to provide PC information as handouts or conversation to those that pass by. In nearly all cases the women will stop and pickup items but very seldom will a man stop. For whatever reason, men wish not to publicly acknowledge or discuss PC. Not with friends, family in a lot of cases, and/or their physicians. If it has to do with their "Manhood" forget it. "No Doc is going to stick anything up my you know where". I'm in my muscle shirt attitude, and my mouth is moving because of my pea sized brain. That's the attitude those of us who try to promote PC awareness run into. Its nothing new and will probably never change. One wonders why the "pink" promotions are so successful for women. Well the "Cavemen" need something to get their attention. I would suggest it must start with the GP's, who must broaden their knowledge in order to persuade the hardliners to submit to very simple tests. Those of the PC brotherhood must pass our knowledge and experiences to our brothers, sons and buddies and do a little arm twisting. If you are in a support group, invite others to go along with you to the meetings. Its the right thing to do.

If you check my stats, you will find that I post those beginning numbers because I am a perfect example of which I speak.
PSA at Dx 105 at age 68, 4/04. ADT (Lupron only), RRP, 5/04. Gleason 4+5=9, Staged pT3bc NO MO, 3D rad, 40 treatments, 8/04. PSA 1/05 <0.01. ADT till 7/07. PSA 0.03 12/08, 0.07 4/09, 0.13 8/09, 0.19 12/09, 0.30 4/10, 8/10 0.37. Will start ADT3 after PSA reaches 1.2.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7078
   Posted 12/12/2010 8:51 PM (GMT -6)   
Clocknut,
 
My diagnosis was a complete accident. I had not had compelling reason to visit my GP in a few years (i.e. I did not fall over regularly, and was not dripping blood). When I went back for a minor problem, the nurse noticed that there was no PSA test in my file, but since I was doing blood work for gout anyway, sure, why not?
 
A week later the uro was saying something about "abnormal" while he poked at places only my Colo-rectal surgeon and Venezulean Customs had been before.
 
What did I know? Nothing, Nada, Nulla, Niente.
 
I had participated in the "Race for the cure' (Komen) for years, but did not know I had something of my own to race for.
 
Everything I learned was after diagnosis.
 
 

MarkMyWords
Regular Member


Date Joined Dec 2010
Total Posts : 55
   Posted 12/12/2010 9:58 PM (GMT -6)   
Jerry L.

Kudos to you for your list. It is spot on. Until my Dad was diagnosed with PC, my exposure to prostate cancer awareness was minimal at best and wasn't something that I worried about. My Dad was 65, I am 45 and my brother is 38 - all diagnosed with PC in various stages of disease. My brother and I had a much more aggressive cancer then our father. Had my Dad not been diagnosed, my brother and I would have not had a PSA test until we were 50. None of us showed symptoms, except for the elevated PSA scores.

TC -

You are so right. Education as early as possible is so important. Men in our society need to get over this phobia of talking about "male issues". The candid conversations in this forum are such a necessity for men in our situation, but we need to educate people before they get to this point. Early detection increases your chances for survival with minimal complications.

My nephews have been given an HUGE education in the last 6 months. They have watched 3 family members go through the process. We have tried o ensure that we don't sugar coat things and answered all of their questions (they are ages 8, 12, 16). They understand what this disease is and how early treatment and detection are so important.

How do we have a "blue" movement for men's issues and start breaking down silo's?
Father diagnosed in April 2010, 38 year old brother diagnosed in June 2010 and I was diagnosed in Sept 2010.
Age 45
Jul 2010 - PSA 10.1
Aug 2010 - Biopsy - 12 of 12 cores positive - Gleason 7 (3+4 on the right, 4+3 on the left)
Sept 2010 - CAT and Bone scans negative.
Nov 2010 - da vinci RP with negative margins. nerve bundles were not spared. negative lymph nodes. Pathology Stage pT3c.

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1162
   Posted 12/12/2010 11:44 PM (GMT -6)   
Sadly, ignorance about prostate cancer isn't exclusively among the undiagnosed.

There seem to be an awful lot of prostate cancer patients who are woefully uninformed about the disease. Some of these guys are smart, educated people, but they turn their well-being over entirely to their docs.

I know guys who never questioned for a moment whether to have surgery or another treatment. The first guy they saw told them they needed surgery and they scheduled it. Happens every day. They do more research to buy a car than they do to select cancer treatment.

Docs often aren't a lot of help. My doc is very stingy with information. He'll be straightforward with me, but I've got to ask. Lots of guys don't ask. I'm not sure if well-informed patients actually have better outcomes, but I sure as hell wouldn't want to remain ignorant about this.

fulltlt
Regular Member


Date Joined Nov 2010
Total Posts : 264
   Posted 12/13/2010 3:49 AM (GMT -6)   
You guys have hit the nail on the head. I had no clue about prostate cancer until my GP called and said I had a higher than normal PSA and I might have prostate cancer. I said what is a PSA. So in answer to your question clocknut, "What do most men know?" I would say they know little or nothing about prostate cancer until it hits them.
age 57 2/2010
PSA 8.2 2/2010
biopsy 2/2010 - 2 of 8 left & 2 of 8 right positive, Gleason 3+4=7
attended support group - advised to get a second opinion
second opinion on pathology from Johns Hopkins 4+4=8
PSA 15 4/2010
5 weeks IMRT 4/2010-6/2010 at Copley Hospital in Aurora, IL
91 palladium 103 seeds 7/2010 at Chicago Prostate Center, Westmont, IL
PSA 3.97 10/2010
no ED or incontinence

Post Edited (fulltlt) : 12/13/2010 2:58:49 AM (GMT-7)


Worried Guy
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Date Joined Jul 2009
Total Posts : 3739
   Posted 12/13/2010 6:55 AM (GMT -6)   
I consider myself a semi-intelligent individual with a moderate understanding of the human anatomy. I was an EMT for 7 years and actively worked as first medic on an ambulance service. Prostate cancer is for old guys who can't pee.

I was perfectly healthy with no problems. My PCa was found because of a routine physical required by an insurance company. At age 56 my very first PSA came back at 17+. While the insurance company rejected me, they saved my life by insisting I see my doctor.

I try to tell everyone I know about it PSA and the importance of knowing the number an being your own advocate. The conversation usually begins with "Do you know your PSA? I have a friend who didn't have a clue...."

Jeff <--- Who didn't have a clue

Post Edited (Worried Guy) : 1/16/2011 5:24:18 PM (GMT-7)


mgl
Regular Member


Date Joined Feb 2007
Total Posts : 122
   Posted 12/13/2010 7:11 AM (GMT -6)   
I was DXed by having a routine physical, no symptoms what so ever. Up until my physical I was very ignorant of the disease, I thought only older men get it not a 50 year old.
I have since surgery, radiation and HT  read alot and learned alot of the disease

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/13/2010 2:19 PM (GMT -6)   
Not only laypersons usually uniformed or never educated by our systems, but experts whom cannot agree on much and cannot define hardly anything on PCa, to the preciseness that is needed for the choices we patients face. It is no wonder it is like the Twilight Zone on PCa issues, fiction looks more believable sometimes.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35, ct and bone scans look clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed useage

TTaylor
Regular Member


Date Joined Nov 2010
Total Posts : 102
   Posted 12/13/2010 3:09 PM (GMT -6)   
I must admit I was somehwat uninformed about PC until I found out I had it. Now I am talking with my sons both in their 30's to have a psa started right away. Quite frankly I didn't know a person could get PC so early. My mind set was that it was an old man's disease, until I read on this web site about a man that had PC and both his sons in there 30's had it. It put me in motion right away to keep my sons informed.
Stay well and blessed
TTaylor
Age 67. Robotic prostatectomy 10/26/2010, due for HT and RT in Janury 0f 2011. Eight of 12 lobes positive. Gleason Score 4+4=8, Margin envolvement was present with adipose tissue invasion and perineural invasion, glandular and stromal hyperplasia present,pT3 pNO and no evidence of metastatic adenocarcinoma.

JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 12/13/2010 3:49 PM (GMT -6)   
My GP, to his everlasting credit, told me 10 years ago that if I lived long enough I would probably develop prostate cancer to some degree. He included a PSA test and a DRE in each one of my annual check-ups. When I got above 4 (who knows if that is the right danger point?) that initiated the visit to the uro, biopsy, dx and eventual treatment.
 
I must admit that until I got my biopsy results from the uro, I did not think much about PC at all and knew very little about it. I always assumed that I would have heart issues...runs in the family. That is what really got me making sure I had an annual checkup. I often wonder what would have happened without those regular checkups and the insurance that made it easy.
 
I now think that I was at least "semi-ignorant" about the importance of monitoring  PSA regardless of my other test numbers.

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 12/13/2010 4:31 PM (GMT -6)   
Joe67, you can just take your words and put them under my name and you will have my story....Every step of the way, including the 10 years
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RRP, Path: pT2c, 110 gms., all clear except:
Probable microscopic involvement of the left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09- Uh-Oh, next in Feb.
ED-total-Bimix 30cc

Canadian Guy
New Member


Date Joined Dec 2010
Total Posts : 11
   Posted 12/13/2010 5:58 PM (GMT -6)   
What do men know .... Most of us not to much . I am 58 living a very active life working and chasing my grandchildren to all the sports events possible. 1 1/2 years ago I decided to go to my doctor for a check up , I never had a sick day that I was not able to work in my life so why would I be chasing doctors for something that is not wrong with me . Chest x-ray and blood test was ordered a week later call from my doctors office wanting me to make another appointment being a heavy smoker since my teen years I was sure this was all about the years of abuse to my lungs. He informed me my psa was high {psa what is that }lol for the next year i went for blood test every 6 months and it was rising each time the last psa test was at 6 . My doctor did not seem to be very concerned at all most of my information on PC cam from a friend that had gone threw this a few years earlier . My friend advised me to insist a biopsy witch I had done and tested positive in 1 needle out of 8. So now I wait to get into see a prostate specialist to find out my options remember this all happened to a guy that never had a sick day in years and no symptoms of PC .

pogmothoin
Regular Member


Date Joined May 2010
Total Posts : 84
   Posted 12/13/2010 7:57 PM (GMT -6)   
F8 said...
most men know "if you're going to get cancer it's the one to get."
 
I really wonder why people say that, considering that the mortality rate for PCa is close to the same as breast cancer. Just imagine if someone ever said that about BC.
 
 
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