We're getting our butts kicked by the ladies again!

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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/8/2009 1:47 AM (GMT -6)   
This is just my own observation...

Last month, September, was National Prostate Cancer Awareness month in the US. I observed very little goings on for us. ZERO-The Project to End Prostate Cancer sponsored the "Dash for Dad" events across the country. But there was little else. I attended the PCRI event, and missed the ZERO Summit regrettably, but we missed the awareness mark in my opinion. This month is National Breast Cancer Awareness month and already, I have been inundated with pink. Restaurants, golfers, NASCAR, and every football game on TV has been carrying news and information about breast cancer.

Guys...we are not learning what we need to.

Here is the best I can say about this observation...

Nice job ladies!

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


jacketch
Regular Member


Date Joined Apr 2009
Total Posts : 179
   Posted 10/8/2009 3:53 AM (GMT -6)   
Is PCa PC?
62yo
V10.46 Dx Feb-09
RRP 5-5-09
No adverse SE
PSA 6-19-09 -0-
PSA 9-21-09 -0-
 
Thriving, not just surviving!
 


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 10/8/2009 6:42 AM (GMT -6)   
Hi Tony.  I'd also add one other thing - I have observed most of what you did and I also have received a telemarketer call about breast cancer research.  We could learn a few things from the ladies.  David

Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


Modelshipwright
Regular Member


Date Joined May 2009
Total Posts : 215
   Posted 10/8/2009 7:41 AM (GMT -6)   
Hey Tony,

Yup, you are right. We are being outshone by the ladies. PCa up here in Canada is not front and centre where it should be and any public awareness campaigns and fund raising seems to be a a very low energy level compared to Breast Cancer. The large banks and other big corporate sponsors are behind all the Breast Cancer walks up here and they sponsor expensive ads building up each event. You rarely see anything about Prostate Cancer.

We are not getting the message out it appears..................

Keep well,
Regards,
Bill
Age 64. Diagnosed with Pca January 2009, PSA 5.6, Gleason 3+3=6, T1c, TRUS biopsies of prostate left adenocarcinoma of prostate involving part of 1/4 biopsy fragments, less than 10% of the surface area involved, CT scan clear. Robotic Assisted Laparoscopic Prostatectomy surgery for treatment - September 29/09.  Pre-op PSA down to 5.28 which I atribute to visualization techniques and a new vegetarian diet. Robotic Prostatectomy done 09/29/09, back home 10/02/09.


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 10/8/2009 7:43 AM (GMT -6)   
It is not hard to notice the pink. I was one of those other guys that were ignorant to PCa awareness until it hit me.

But believe me I have been taking ever opportunity to spread the word. Every time I see the pink display in a store or on the street I take the opportunity to ask them why they didn't have the blue display last month. Many times I think I have caused them some embarrassment and discomfort. Good! Maybe next year they will remember and get with the program.

I was in a medical supply store just yesterday for my wife. The pink was prominent. I took the opportunity to address the in-equity of it with the store manager. She said she was not aware of the September Awareness. She was making notes to contact the home office to insure that they were on the ball next year. Seems they do a lot of business with PCa guys and felt ashamed they were not up to speed.

We need to all start making the little contributions wherever we can.

Many of us hope we are not spreading the cancer within, let's take the time to start spreading the message without.

Sonny
61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

da Vinci 9/17/09 Dr. Mani Menon Henry Ford Medical Institute

Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
ALL NERVES SPARED
Margins: focally positive right posterior mid level
Perineural Invasion: present
Seminal Invasion: absent
Venous Invasion: absent
Angiolymphatic Invasion: absent
Left Internal iliac lymph node: reveals zero
Right Internal lymph node: reveals zero


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/8/2009 9:15 AM (GMT -6)   
Yes, I noticed all the PINK while watchint my beloved New England Patriots last Sunday, my first comment to my wife, was where is all the blue?

We can blame whomever we please, but it is all own fault, going back many years. We need to become more militant about prostate cancer (and this is coming from a dedicated pacifist).
I
We are part of the problem, whatever ignorance we had about PC in the past (and I was one of them), is in the past now. I look for natural openings in conversations or with groups of men to introduce PSA testing into the talk.

Part of it is decades of backwards thinking about how men just tough it out, and how we are the lucky ones because all we have is prostate cancer. There is still a lot of stupid thinking out there.

I admired the way that Breast Cancer Awarness has such center stage and widespread support whereever it is promoted, does not make me jealous, but makes me sad. We men are in a world of "Sh**" with what ails us.

What can we do to change the publics perception of prostate cancer? You would think that with the sheer number of newly dx. men each year, adding to the vast army of men with pc, and the number of deaths, we would have a good foundation to change things.

I am open minded about this, could use some sense of direction.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - first treatment IMRT.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/8/2009 9:38 AM (GMT -6)   
Jack, yes on that question.

Guys,
I think we are doing a good job as patients, but the ladies have so mu better awareness. I mentioned before in one of my on air interviews that the ladies are aware at the age of 25. Guys think they are still invincible at 44...er at least I thought I was.

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 10/8/2009 9:51 AM (GMT -6)   
What color should we adopt .... yellow ?

Seriously, we need to have something like the ladies have done as a rallying point. When I see pink, I think of insulation and breast cancer.

Tony, what are your suggestions ? Who do we support, and who will take the bull by the horns and make this thing happen ?
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)


Squirm
Veteran Member


Date Joined Sep 2008
Total Posts : 744
   Posted 10/8/2009 10:05 AM (GMT -6)   
It's not just the ladies supporting breast cancer funding, I see men at a lot of the fund raising events, participating in the efforts too...which is good of course.

STW
Regular Member


Date Joined Jun 2009
Total Posts : 292
   Posted 10/8/2009 10:27 AM (GMT -6)   
No matter what we do the ladies will beat us on aesthetics.
After all, given the choice, which would you rather look at? wink
Diagnosed at 54
PSA 8.7
Biopsy 1/7/09
4 of 6 cores positive, one at 90%
Gleason 3+4=7
Neg bone scan 1/15/09
One shot Lupron Depot 1/27/09
Tax Season
RP 4/29/09
Neg lymph nodes, postive seminal vesicle, 1 positive margin
Gleason 3+4=7 with tertiary 5
Catheter out at 2 weeks no nighttime incontinence
Pad free week 5
PSA 6/6/09 <0.1
PSA 9/10/09 <0.1


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/8/2009 11:15 AM (GMT -6)   
Squirm great point.
When a guy has a wife or other female loved one with breast cancer, they are more likely to reach out in active support than if they themselves get PCa. That's my opinion, but I see it as you have.

Goodlife, I believe that we are a generation off from fixing it.

My suggestion for a better awareness?

1> Like the old CSN song says "teach your children well". Girls read about cancer and particularly breast cancer in high school. And it is reiterated many times. We need to do the same.

2> Advocacy's unite! This is a real problem. NASPCC and ZERO have parted ways. The Prostate Cancer Foundation calls June Prostate Cancer Awareness month, while the Coalitions have embedded congress and the White House with September as awareness month. Advocacy and support groups get hung up on which treatment is better. It happens here.

3> Don't withhold anything. Many men just won't talk period. The girls talk everything. It is not a big deal to let someone know about incontinence or ED. At least outside of our own ego's. But when it comes up, let people know what you know.

There is no immediate answer as long as we are divided and silent...I guess you should consider PCa the silent killer for more than just the symptoms.

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4849
   Posted 10/8/2009 12:29 PM (GMT -6)   
Even Hard Rock Cafe has a large "PinkTober" thing going on.
 
More power too em..
 
BUT, I went to my local NBC web site a while back and clicked on their "got a news tip for us" link. I pointed out that the local grocery stores (tom thumb/safeway) were collecting money for Prostate...I will continue doing this in the future.
Age 54   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/8/2009 3:16 PM (GMT -6)   
Steve, I remember that, and I also made a pretty big deal about it then. But that wasn't during the September Awareness Month if I recall correctly. Seems like it was back last June.

The only way to get this issue to the fore front in my opinion is to get those celebrities and folks in the public eye to speak up. General Petraeus kept silent about it along with two other generals. Politians, actors, former athletes and the list goes on and on. Does anyone think that if I stand on a soap box and yell...would I be heard? Now get someone like Robert DeNiro to stand up and lots of folks are going to listen.

When people of high position choose to remain silent, then it makes the public in general feel as though this form of cancer isn't a big issue or even worthy of a cause. No sponsor is going to promote advertising in behalf of prostate cancer without some big name to go with it. Just the facts.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month Apr 2009 .06
                   9 month Jul  2009 .08


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 10/8/2009 3:37 PM (GMT -6)   
Funny you bring this up...last Sunday, John and I walked in a local breast and ovarian support group. There were almost 10,000 people who showed up! As we were walking, I said to John "why can't we get this type of support for prostate cancer." The answer, I think, is that the general perception is that PCa is not as "serious" a disease as breast or ovarian cancer. We need to change the perception about PCa - as I've said before, if I hear one more time "no one dies from prostate cancer" or "if you have to have cancer, prostate is the one you want" I'm going to throttle the person who tells me that.

The ones who can change this perception are you guys. Men - and those who love and support them - need to get out there and spread the word. After John was diagnosed, I asked all of his male friends and relatives if they've had their PSA checked or had a DRE at their last physical. I think some of them thought I was being rather cheeky asking such a "personal" question. Perhaps I was, but at least I got them thinking about it.

Prostate cancer is a very "personal" cancer since it can affect a man's sexual and urinary functions. Until we can get past this, prostate cancer won't receive the attention and research it deserves.

The American Cancer Society statistics for 2008 show that prostate cancer was the second most diagnosed cancer in the U.S., with cancer of the lung/bronchus being the first and breast cancer being the third. We all need to get the word out and let people know that there is no "good" cancer, and that we should all do everything we can to encourage more research into diagnosis and treatment.

Off my soapbox (for now)

Sephie - and John
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (extraprostectic extension in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Appointment with two radiation oncologists on September 29 and October 2.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/8/2009 3:41 PM (GMT -6)   
Sephie, on the same page as you. There is no good cancer, no matter what the brand or blend. I too would love to choke the next person that brushes off Prostate Cancer as if it were an ingrown toe nail. Just from our small group alone, look how many lives it has changed and affected, the misery, pain, fear, and anquish that it causes.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - first treatment IMRT.


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 10/8/2009 7:45 PM (GMT -6)   
David, I'm with you 100%.

Tonight I spoke with 2 of John's sisters. They simply don't understand and have told me in the past that I'm over reacting to John's situation. His oldest sister wondered why we aren't waiting before starting SRT if John's PSA is still so low. I tried to explain the issue - detectable vs. nondetectable PSA after surgery - but don't think she understood the situation. When John's PSA first went up to 0.1, one of his sisters said to me "stop worrying ... no one dies from prostate cancer." That statement stopped me cold, and I realized then how misperceived the disease is.

For a while, I was starting to think that perhaps I was making too much out of the situation. Perhaps I was reading too much into what the PSA could mean. Of course, I hoped that the test result was a glitch, and that the second reading would come back at 0.0. When it came in at 0.3, I knew that I would have to help my John make this very important decision. That is the most important thing to me right now.

Take care, David.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (extraprostectic extension in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Met with radiation oncologist and began process for salvage radiation. CT scan and bone scan done on October 8 (bone scan clean!).


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/8/2009 7:52 PM (GMT -6)   
Sephie, you sound like a great wife, John is a lucky man. I assure you or your sisters, that you aren't over reacting to his situation. You are being pro-active in a very useful way. Guess there is no reason to get angry when people say inaccurate and insensitive remarks like you referenced, for the most part it is just honest ignorance on their part.I

Before I ever started having PSA tests at age 50, can honestly say I never thought about prostates, didn't even know where it was or what it did. Never knew anyone that had PC, wasnt known in my family. But boy, when it starting getting serious and I started researching what it was in case I was eve diagnosed, sure made a believer out of me. I will never forget, then while waiting for the results of my 3rd biopsy, my wife, my gp, my uro, and my kids all said, don''t worry, there's almost no chance it will be cancer. When the news came out,, a lot of people were shocked.

I think its great how you look after your husband and his cancer issues and all the research and details that go into it. All we can do is to educate the people in our lives one brain at a time.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - first treatment IMRT.

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