The Blue Wrist Band And Ignorance About Prostate Cancer

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JCL
Regular Member


Date Joined Jul 2007
Total Posts : 242
   Posted 11/24/2007 6:08 PM (GMT -7)   
I purchased a dozen blue wrist bands from the Prostate Cancer Foundation that signal prostate cancer awareness. I've been wearing one since I received them and will continue to do so until the day I die.

Today, while standing in line at a coffee shop, a guy behind me asked what the blue wrist band signified. I told him and also was openly honest about my surgery. I was stunned at his reply. Basically, and I paraphrase, he told me that "prostate surgery is pretty common and not all that difficult to recover from." Instantly I had to calm myself and put this guy straight about the fallacy he had just related to me. When I asked him if he had had a PSA test recently (I judged him to be in his late 50s), he told me, "I'm in perfectly good health, good shape, and feel fine. I don't even get a physical." I don't know if I changed his mind, but I implored him to please get a PSA test, and told him this cancer was completely arbitrary. I was in top shape too, felt fine, but ended up with an aggressive cancer that, by all indications, was caught early enough. Somehow I don't think he'll get a PSA test, and it just goes to show how much ignorance there is out there about this cancer that has affected us here.

Angry and sad.
Age: 49
Diagnosed: March 25, 2007
PSA: 3.0
Biopsy: Gleason 6. Five of twelve core samples positive with <5% each. No perineural invasion seen.
DaVinci Surgery: May 21, 2007 at Florida Hospital, Orlando, Florida. Surgery took one hour and 45 minutes. According to my surgeon, everything went textbook and the prostate peeled away nicely.
Post-op Pathology Report: Upgraded to Gleason 7 (3+4), negative margins, negative capsular penetration, negative seminal vesicles, lymph nodes left intact, multifocal perinural invasion, 15% of prosate involving cancer in both lobes.
Continence: Out of the pads at five weeks. Still have some very minor stress incontinence at times but it's not an issue. Still Kegel every day and will continue to do so.
Erections: Yes! With the assistance of Cialis.
1st Post-op PSA: <0.1 2nd Post-op PSA: <0.1
Family history: My Father had his prostate removed at age 67 in 1997 and has had a <0.1 PSA for the past 10 years. I was diagnosed at a much earlier age and had a more agressive cancer than my father. Go figure.
 
 
 


Izzyblizzy
Regular Member


Date Joined Oct 2006
Total Posts : 411
   Posted 11/24/2007 6:25 PM (GMT -7)   
Well, the pink wristband is much more understood (for breast cancer) ... and the yellow "live strong" one for cancer or any kind of illness.

Sorry that you were treated that way. But men do tend to be a little more silent in all ways about prostate cancer! But good for you for wearing a symbol of it and trying to explain it! I really think it is important, especially for any who may be at risk.

Keep speaking out, even if it did not penetrate that one's mind, others will listen :)
Age: 63
Diagnosed: 10/30/06
PSA: 3.7 (2005: 3.4, 2004: 4.0)
Biopsy: 1/10 cancerous, 5% of one core, right apex.
Gleason: 3+3=6
Da Vinci: April 10, 2007, Denver CO
Path results: 1% of prostate involved. Very small tumors on both right and left apex. Negative margins, negative seminal vessicles, lymph nodes left intact. Gleason upgraded 3+4=7.
1st PSA Results: May 11, 2007 <.01
 


Izzyblizzy
Regular Member


Date Joined Oct 2006
Total Posts : 411
   Posted 11/24/2007 7:41 PM (GMT -7)   

reply moved to..>  ziggy9's page...

Post Edited By Moderator (bluebird) : 11/25/2007 7:42:12 AM (GMT-7)


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 11/24/2007 8:16 PM (GMT -7)   

    I can not wear one at work but I will probably order one soon.  Some guys just don't get it.  Let's hope they don't end up with PCa.

    KW

 


    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
        Biopsy Sept. 27, 2006 - Diagnosis Sept. 29 - 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
        RRP on Oct. 17, - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
    Oct 17, 2007 1 year Post Op - Still fighting moderate / Severe incontenance. Using 4-6 pads a day.  Erections usable....sometimes!...Better with 100mg Viagra
   


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 11/24/2007 11:18 PM (GMT -7)   
JCL,
I wear the ribbon on the lapel. I also include a "Proud Supporter: www.prostatecancerfoundation.com" On my business emails. I have had about 6 responses. Only one I thought was insensitive. I flew right by it. I did say to him that he, too, may learn a bit more about this disease at some point in his life. I told him that it would best suit him to get tested. But I just let it be. At first, when I told people about my medical condition, it was common for people to say it's the "good one". Still is. They tend to be surprised now when I tell them that it's the number two cancer killer and most who get it never had a single sympton. I seldom go into any details about my situation anymore. Instead, I direct them to search the web pages on advanced prostate cancer. I remind them that people close to me are members of that club and that they could use their support. Not much else to say.

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology was poor: Gleason 4+3=7, 4 positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
 
My PSA did drop out after surgery to undetectable.  It has not returned and I will continue HT until January '08.
 
My Life is supported very well by family and friends like you all.
 
STAY POSITIVE!


uncledan
Regular Member


Date Joined Aug 2007
Total Posts : 120
   Posted 11/26/2007 8:24 PM (GMT -7)   
Sorry that so many are unaware of how many men are dying each year ( about 220,000 ) from this ( as many seem to think ) common, curable, small bump in the road. I blame a lot of this on primary doctors who think a PSA score of 4.0 is OK, if you are over a certain age. Some how we need to make the men of today realize that they need to be tested at 30 not 50. I had a misconception about my PSA results and I thank God I had a Doctor who pushed me to have a biopsy. I even put that off a while because I was of the opinion that watchful waiting might be the way to go, since I had always heard PC was a slow mover. ( WRONG ) I think the blue band is a start in the right direction. Uncle Dan
Age 67
No symptoms, DRE negative, 10 - 06 PSA 5.44, 01 - 07 PSA 6.47
5 - 07 CT and Bone scans negative, 05 - 07 Biopsies, 2 of 6 positive
Gleason Score (3+4) 7 Stage T1c
08 - 14 Dr. Dasari - Baptist Hospital, Nashville da Vinci RAP, five hours surgery
Some right nerve and all left nerve removed,
Hospital discharged 8 - 16
Pathology report Negative margins, Encapsulated, 50% left side
Lymph nodes 2 R & 1 L - Negative, R & L seminal vesicles - Negative
Gleason changed (4+3) 7 closer to 8 than 6
9 - 26 Great PSA 0.000, 9 - 27 Starting on meds for ED
10 15 Dry most of the time, occasional leak (dribble )
10-27 Received pump started use on 10-29 can see resulted, enlargement.
11-22 Viagra, Lavitra no help yet, Pump still not producing usable results either.
11-28 Will discuss 2nd PSA results with surgeon


Jayadub
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 11/26/2007 8:44 PM (GMT -7)   
uncledan you are overstating PCa deaths by almost a factor of 10. According to the CDC 29,554 men died from prostate cancer in 2003, which is the latest year for which complete statistics are available. The number you gave is the yearly total diagnosed with PCa. Still too many deaths, regardless.

54 years old

PSA 5.6 on 3/20/07

DRE: Negative

Biopsy on 4/20/07 

Results 4/25/07:

3 out of 12 cores positive, 2 on the right lobe with 5% adenocarcinoma Gleason 3+3, 1 on the left lobe 10% adenocarcinoma Gleason 3+4, overall Gleason graded 7 Cancer T1C.  After web research discovered Proton Beam Therapy and called Loma Linda. Completed consultation with Dr. Luu on 7/5/2007 and started treatment at Loma Linda on 7/26/07. Completed treatment 44 on 9/28/07. 0 treatments remain. Side Effects remain minimal. 1st PSA scheduled for end of Jan. 08.


FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 11/27/2007 7:42 PM (GMT -7)   
I believe the current stats are 220K will be DIAGNOSED, 19K will die from PCa this year.

As for the wrist bands, I have had one (from www.flhw.org) on my left wrist since March on 2005,
it has never, nor will it ever be removed. A doctor once began to slip it off, I quickly let him know it wasn't necessary!

As for awareness in general, we have a long uphill battle, but we have no one to blame but ourselves. Women are almost fanatical,
men are very private, guarded etc.

I have a small army of supporters here in Kansas City, we have done a lot in two and a half years - I always have to ask others
"What are you doing"? It's not one thing but a combination: write your legislature, write letters to the editor, raise $, write a check, wear a wrist band!!
Dx'd 2/18/05
PSA 219, bone mets, lymph node involvement
Gleason Score: 7
Current (11-17-07)
PSA: 23
Lupron, Keto, Avodart

www.flhw.org


gtmriviera
Regular Member


Date Joined May 2007
Total Posts : 338
   Posted 11/27/2007 8:21 PM (GMT -7)   
Another reason to keep up with the forum!  I did not know about the blue and had even wondered why there wasn't something like that.  Thank you for the information and yes we all get the "oh is that all?" look when we tell someone the type of cancer that we have, but never from someone who has ever had any type of cancer.  When a celebrity dies it gets a little play for awhile  but then the public forgets.  It's probably too morbid but I wonder if there is a site that lists celebrities who have died from PC.  I can think of several and maybe looking at a list like that would get a little attention.  Just an idea and probably a bad one. 

Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2249
   Posted 11/28/2007 8:02 AM (GMT -7)   
It is unfortunate, but true, that there is a lack of education about prostate cancer.  Regular PSA testing in addition to a DRE, is still not a standard part of an annual physical exam by many primary care physicians. 
 
I've had a number of opportunities to speak to others about my own prostate cancer--an equal opportunity disease--and recommend regular PSA/DRE for men in the age window for this disease.
 
As you all know, but many do not, the earlier prostate cancer is diagnosed, the better the chances to treat and cure it. I try to pass on information every chance I get in a well that is helpful.   
Age 59 PSA 2.6 (Quadrupled in one year) Gleason 5
Bilateral nerve-sparing RRP 6/21/06
Cancer confined to prostate, post-op PSA's non-detectable


gtmriviera
Regular Member


Date Joined May 2007
Total Posts : 338
   Posted 11/29/2007 5:12 PM (GMT -7)   
I try to be careful and balance encouragement with the bad, but here's something about my experience that I probably have not mentioned elsewhere and this may be a good spot.  Last year (2006) my psa was 1.  This year it was 4.5, which still doesn't sound terrible, especially when the biopsy only found one sample that was "definitely cancerous".  I put off surgery for two months after that due to family stuff that you can read about elsewhere.  How slow moving is PC?  Postsurgery results:  the prostate had well developed cancer throughout.  The surgeon said that radiation without surgery would not have taken care of it.  More luck:  the cancer was not outside of the prostate, the nerves were spared, my new results I just got last night-PSA was .1.  My point is do the lab work, just do it!  Every year!  There are no symptoms until it's too late.  I was in pretty good shape for 58.  I'll brag a little and say that I would pass for 40 easily.  No smoking, no drinking and I had a decent diet for your average MWM.  I have Parkinsons, but no other health problems.  Don't wait for your doc to tell you that you are overdue for lab work, you tell the doc that it's time to do it.  A simple test saved my life.

FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 11/29/2007 8:13 PM (GMT -7)   
gtmriviera said...
Another reason to keep up with the forum! I did not know about the blue and had even wondered why there wasn't something like that. Thank you for the information and yes we all get the "oh is that all?" look when we tell someone the type of cancer that we have, but never from someone who has ever had any type of cancer. When a celebrity dies it gets a little play for awhile but then the public forgets. It's probably too morbid but I wonder if there is a site that lists celebrities who have died from PC. I can think of several and maybe looking at a list like that would get a little attention. Just an idea and probably a bad one.


Here are two I have discovered over the years:

http://felix.unife.it/Root/d-Medicine/d-Oncology/d-Special-oncology/d-Prostate-cancer/b-Prostate-cancer-famous

http://prostate-help.blogs.com/famous/
Dx'd 2/18/05
PSA 219, bone mets, lymph node involvement
Gleason Score: 7
Current (11-17-07)
PSA: 23
Lupron, Keto, Avodart

www.flhw.org


JCL
Regular Member


Date Joined Jul 2007
Total Posts : 242
   Posted 11/30/2007 5:51 AM (GMT -7)   
Being a sports fan, I can tell you that Joe Torre (former manager of the NY Yankees), Bob Gibson (former St. Louis Cardinals pitcher) and Robin Cole (former Pittsburgh Steelers linebacker) are all prostate cancer survivors. Robin Cole is very active in prostate cancer awareness, and holds a golf tournament in Pittsburgh every year that benefits prostate cancer research. Cole's father died from prostate cancer and two of his brothers are prostate cancer survivors.
Age: 49
Diagnosed: March 25, 2007
PSA: 3.0
Biopsy: Gleason 6. Five of twelve core samples positive with <5% each. No perineural invasion seen.
DaVinci Surgery: May 21, 2007 at Florida Hospital, Orlando, Florida. Surgery took one hour and 45 minutes. According to my surgeon, everything went textbook and the prostate peeled away nicely.
Post-op Pathology Report: Upgraded to Gleason 7 (3+4), negative margins, negative capsular penetration, negative seminal vesicles, lymph nodes left intact, multifocal perinural invasion, 15% of prosate involving cancer in both lobes.
Continence: Out of the pads at five weeks. Still have some very minor stress incontinence at times but it's not an issue. Still Kegel every day and will continue to do so.
Erections: Yes! With the assistance of Cialis.
1st Post-op PSA: <0.1 2nd Post-op PSA: <0.1
Family history: My Father had his prostate removed at age 67 in 1997 and has had a <0.1 PSA for the past 10 years. I was diagnosed at a much earlier age and had a more agressive cancer than my father. Go figure.
 
 
 


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 11/30/2007 6:38 PM (GMT -7)   
I agree. Men are not doing enough to educate each other about this disease. We all must be willing to be vocal about this so other men will not die from it. Do what you can to tell our brothers about it. Most of us are not celebrities but we all have friends and co-wokers we can convice to get this simple blood test so we can live longer lives with our families. My Dr told me I was the first person who asked for the old finger wave. I just told him I did not want to die from cancer.

Take care and spread the word.

Mika
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