How can we get the message out about early detection?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 11/11/2008 9:21 AM (GMT -6)   
I have read so many studies lately about early detection and how treatable PCa can be if caught early enough. Problem is this, not many people are advocates in their local communities. With breast cancer, you see and hear plenty, but not about PCa. What can we do to help get the message out.

peace and love
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
cancer in 4 of 6 cores
92%
80%
37%
28%
 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 11/11/2008 11:20 AM (GMT -6)   
Dale,

Get out and advocate, bringing as many into the fold as you can on the way. Advocating is an endless effort. It does not end with the parade and isn't free. It takes a good saleman just to get funding to support informational programs. This IS how all news worthy subjects stay news worthy. No lesson learned by the masses is taught in silence. And, as we all know too well....nothing comes without a price.

As a layperson, ask to spend a few moments informing people at a church meeting or anyplace where people gather. The local Masonic Temple, Elks club...whatever. Anyplace you can be an advocate, be there. There are ways to get informational hand outs. Good Luck and go get em!

Swim
 


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 11/11/2008 11:35 AM (GMT -6)   
Great post and I have to say I was broken hearted when I showed up to our local Pace (Prostate Cancer) Walk last weekend and found maybe 1/10th of the turnout. (Well in comparision to the breast cancer runs/walks and many others that I have done). I am still sick to my stomach. I just happend to find out about the race a couple of days before, and it was literally two minutes from my house and a cause very near and dear to my heart. I think Swim is absolutely right. Great thread Dale.
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Oct. 10, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 11/11/2008 11:40 AM (GMT -6)   
I think that with the number of PCa survivors there are and if everyone would wear the blue wrist band it would spark at least a question or two. I know that I sometimes get a question asked while at a restraunt or out in public and I tell them what it means. At the same time I encourage the men to know what their PSA is just as much as they know their Cholesterol number.

My wife wears the blue ribbon attached to her purse and if when shopping etc, if someone asks what does the blue stand for...she chimes right in and believe me...you tell the wife of a man about cancer...she will insist that he gets checked...I know that is what happened when my neighbors wife found out I had PCa...the very next week her husband was checked.
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base)
Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1,2008
Gleason 7 (4+3) Staged pT2c NO MX
Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA Oct 08 <.05


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/11/2008 11:50 AM (GMT -6)   

The important part is know the facts.  If more people knew 500 men die each week in the US alone from prostate cancer, they may take to heart that its a serious matter that needs more attention.  The cause for prostate cancer is a wonderful one we should learn about.  Women talk about their disease.  Plain and simple we guys a wimps that way.  I am getting involved in community and national advocacy and yet still I know more women in Las Vegas who have had breast cancer than men who have had prostate cancer.  Our UsToo meetings here are incredibly small.  Sometimes under ten, and seemingly half of those  the regulars and are Cryo patients pushing that all should be treated by this one doctor in Ventura California.  I don't know why that is, but it is what it is.  At least they're talking.  There are nearly two million people in Las Vegas.  Lets round up and assume half are men.  Let's also assume that a third are at a ripe age for prostate cancer.  333,333 men here and 1 in 6 get the disease.  50,000 men in the Las Vegas area have the disease, and we can't get an event focused that gets more than a couple hundred people to.  And the UsToo meetings average 20 guys, also rounded up.  Call it what you will, but it us guys that have to be open about this disease.  There is no dignity in silence!

2 million guys are alive in the USA right now who have suffered from prostate cancer!  Too many think it's their right to remain silent. nono

·        1 in 6 men will get prostate cancer.

·        Every 19 minutes a man dies of prostate cancer.

·        In men whose cancer has escaped the prostate, like mine did, only 31% live 5 years. 

·        Prostate cancer is second leading killer in men behind lung cancer.

·        If you have a brother or a father with prostate cancer it is 100% more likely you will have it at some point in your life.

·        Aside from skin cancer, prostate cancer is the most diagnosed cancer in America.

·        219,000 will be diagnosed this year in The United States alone.

·        Approximately 25% of diagnoses occur under the age of 65.

·        Prostate cancer often does not cause symptoms for many years.  By the time symptoms occur, the disease is usually well beyond the prostate.

·        Prostate cancer, when caught in the early stages is 98% curable

 
 
I'm off my soap box, now.
 
Tony



Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 

Post Edited (TC-LasVegas) : 11/11/2008 9:57:33 AM (GMT-7)


Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2335
   Posted 11/11/2008 12:20 PM (GMT -6)   
Prostate cancer advocacy is important and can be done in many different ways.  One sees breast cancer cure advocacy everywhere these days, but little for prostate cancer.  My wife and I recently bought some yogurt at a local store and the lids have the pink ribbon symbolizing breast cancer on top with a note to send in the lids to raise money for breast cancer research.
 
One of the issues with early prostate cancer detection is that not everyone believes in it.  There are entire countries who do not routinely screen for prostate cancer. The American Medical Association does not advocate annual PSA screening tests for men over 50 (many prostate cancer experts now recommend 40 for a baseline evaluation) , recommending that it be a personal choice between the patient and his physician.  Read:  You might be opening a Pandora's Box.  We have a least one member here who posts along these lines.
 
For those of us who believe that early detection translates to a possible cure there are small things we can do that don't require much effort. Here are some things I do: 
 
(1) In the supermarkets I use, I write on the store comment cards about prostate cancer awareness month (September) and why the store should be promoting this--just as they do breast cancer research. I've heard back in one case from a supermarket chain vice-president.
 
(2) I let it be known at work and among social contacts that I have had prostate cancer.  I've already had several men and women contact me when a spouse or a friend has been diagnosed, asking for my help and support.
 
(3) I contribute small sums as I can afford it to organizations that do a good job at providing information and/or funding research about prostate cancer.   There are many other ways that some of you raise the light-blue flag for prostate cancer awareness, including  posting here on the forum, which helps others in their own pc journey.
 
The word on the street is that prostate cancer is slow-growing and you'll die of something else. Somehow this misperception needs to be changed: prostate cancer does kill and that early detection can save a life.
 
When Barack Obama was elected as president of the U.S., one of my first thoughts was, 'As an African-American in his mid-40s, I hope he is screened regularly for prostate cancer'
 

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 11/11/2008 1:06 PM (GMT -6)   
WOW thanks for the heartfelt response. I feel strong about getting the message out in our communities and at the national level. Tony (TC LAS VEGAS) are working on a program that will hopefully help on the national level, and I am working on something for the local level.
If we all stick together we can make a difference. I have made it my mission.

Love you all
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
cancer in 4 of 6 cores
92%
80%
37%
28%
 


FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 11/11/2008 10:56 PM (GMT -6)   
I think we need a high profile national brand (food, beer does it matter?) to support an awareness campaign and sustain it.
Think of the pink lids on ALL Dannon yogurts. This starts in August and runs well into November. Start small, hog-wash!! I do small, I raise money and awareness in Kansas City but that's as far as my little non-profit reaches.

We need somebody with a contact a large marketing firm or P&G, Kelloggs, General Mills, et al to help us.
Start big and get bigger!
Dx'd 2/18/05
PSA 271, bone mets, lymph node involvement
Gleason Score: 7
Current (11-3-08)
PSA: 31.18
Taxotere + Prednisone + Atrasentan
[8th Treatment on November 3rd]
Clinical Trial:
http://www.clinicaltrials.gov/ct2/show/NCT00134056?term=prostate+AND+atrasentan&rank=2
Lupron
Personal Blog:
prostatecancerat42.blogspot.com


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 11/11/2008 11:14 PM (GMT -6)   
Tony...You can stay on your soap box as long as you want!!!! I'm with ya! I bring up the subject to almost anyone I have a chance too. Many of them are so shocked to learn I "Had" PCa.
I need to get a bracelet or two. Anyone know where I can order them from? I would also like to get one of those stick on "ribbons" for our cars.
KW
    43 at Dx and Surgery (RRP)
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    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.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
    Oct. 6th, 2008 - AUS Activation by Dr. Morey
     


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 11/12/2008 9:01 AM (GMT -6)   
kw:

USToo is a prostate cancer support group in most communities and have them available for a buck each> Here's the link:
www.ustoo.org/Shopping/productinfo.aspx?productid=1

The magnetic ribbon is everywhere if you do a Google search. One store I found is reasonably priced and has a good selection of different styles.

www.bumperstickermagnet.com/awareness-prostate-cancer.html
James C.
Co-Moderator- Prostate Cancer Forum
Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
Present- 1 year: ED- Viagra, pump continues, no response- Trimix .10ml x 2 weekly continues
Post Surgery PSA's: 3 mts-.04, 6 mts.-.04, 9 mts.-.04, 1 Year-.02.


FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 11/12/2008 10:17 AM (GMT -6)   
You can also buy car magnets here:
www.prostatecancerfoundation.org/site/apps/ka/ec/catalog.asp?c=itIWK2OSG&b=1478463&en=clJNI3OLKbIWJdMOJaJTLaPZLmJXIcMWKkKRIgN6LzG&Categoryid=234303

and it supports the cause. Nothing wrong with the other link, just not sure where the $ go?

Post edited to add working link for url.

Post Edited By Moderator (James C.) : 11/12/2008 9:53:24 AM (GMT-7)


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 11/12/2008 6:47 PM (GMT -6)   
You guys have given me tons of ideas, I think I will formulate some kind of a plan. Who knows where we can take this if we give ourselves permission to believe that we can accomplish the impossible.
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
cancer in 4 of 6 cores
92%
80%
37%
28%
 


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 11/13/2008 8:40 AM (GMT -6)   
Dale, this is a great thread. I believe one of the reasons that prostate cancer is not as well known is that men are afraid and are actually in denial. They are afraid to find out.... They don't realize that by catching it early they may AVOID the side effects that later treatments give... Also, breast cancer is very well funded and almost every product has a pink ribbon on it...well, I was listening to Dr. Dean Adell last week, and he made the suggestion that there is a big link between breast cancer and prostate cancer. He said if you look under the microscope the cancer cells look the same...Maybe that is where the money should be going...into looking at a relationshio between breast and prostate. It does seem maybe more than cooincidental that breast tissue...that nurses a baby, and prostate tissue that brings life through semen should be related....I don't know...just a thought....after listening to Dr. Dean Adell on the radio... Diane
Husband Pete
dx Jan 2001 age 67 gleason 4 + 3 PSA 16.5
seed implant and conformal radiation Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06
Fistula operation 2/07 MSK
Many cystoscopies and ER visits with strictures
catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/07
AUS Operation at MSK Sept 8. Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 11/13/2008 6:49 PM (GMT -6)   
thanks Diane, I am going to bump this back up.
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
cancer in 4 of 6 cores
92%
80%
37%
28%
 


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 11/18/2008 12:27 PM (GMT -6)   
If men would visit their physicians at least once annually, say, for an annual check-up, most would probably be asked to submit to a PSA test and probably do that - and more early diagnosis would result.  Actually, I think the early diagnosis levels are increased because the physicians are recommending the test.  My doctor started testing me at 50, and PC was detected when I was 58.  There are men I know who suspect something is happening to them, to their prostate functions, but, as has been said already, are afraid to be tested.  Many men don't want to deal with the issue because they worry about their sex lives - and they forget about the rest of their lives not involving sex.  Dealing with women and breast cancer took a similar path, I'm recalling - when many women didn't want to be tested because of fear of the results, if they were positive.  We've greatly moved foward on that front.  Regular doctor visits - that's where the awareness probably begins.

Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (getting better, though)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0

 


pcainaz
New Member


Date Joined Nov 2008
Total Posts : 7
   Posted 11/18/2008 1:26 PM (GMT -6)   
Do you gentlemen and ladies know that out of the hundreds of departments that the US Government has there isn't a single one related to Men's Health? Amazing but true, and we need to ask ourselves why is that so. I can think of many possible answers and since our Congress is populated by more males than females, one must then be that those males officials tend to be apathetic about their own health issues. After all being sick is a sign of weakness and most of them want to appear healthy and be reelected.

When one looks at PCa research funding, we are under funded as compared to other cancers with less mortality. Compare PCa advocacy with that of AIDS or Breast cancer and we come last by a large margin. And therefore more funds logically go to:HIV and breast cancer research.

Male apathy is a huge issue in PCa, but the division in medical opinion about early detection is by large, at this point in time, a monumental obstruction and a heavy anchor in PCa advocacy's shoulders. The U.S. Preventive Services Task Force has issued negative recommendations about screening and treatments and until the value of early detection and effective treatment are clearly connected to the reduction in PCa deaths in this country we will have to do what many of you recommend on this thread (good ideas!). Our advocacy as an individual or organized one has value, so I urge you all to continue working to promote PCa awareness. Help other men understand the risk and little by little we can win this fight. Sooner or later the truth will surface. Godspeed,

RalphV

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 11/18/2008 6:23 PM (GMT -6)   
Thanks for all the comments on this post, hopefully together we can all become advocates of PCa.
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
cancer in 4 of 6 cores
92%
80%
37%
28%
 


Lungman
Regular Member


Date Joined Jan 2008
Total Posts : 276
   Posted 11/18/2008 7:35 PM (GMT -6)   
Dale, I share your questions about the lack of public knowledge about prostate cancer. It seems that Prostate Cancer Awareness month comes and goes without much public acknowledgment. I work in a hospital, and did not see one single poster or ad display with reference to prostate cancer. I guess it is just considered a public nuisance and not the major disease that it really is, my guess is there is just not enough money involved in the treatment to justify an ad campaign. Sadly, the health/pharmaceutical industry loves widespread, chronic illnesses to treat, and glamorous ones, like heart disease, that it can produce revenue in testing/interventional therapy. I will continue to wear my blue bracelet and be a one man campaign, and tell anyone interested of the importance of early testing. Just my two cents worth.
Randy
46 you when diagnosed, now 48
Pre-Op PSA 9.9
1 of 12 cores positive, Gleason 3+3
DaVinci on 9/5/2007
Post-Op Gleason 3+6, Negative Nodes and Margins
Less than 1% of prostate involved with CA
3 Month PSA 0.01, 6 Month PSA 0.01, 9 Month PSA 0.01
One Year PSA 0.01
Incontinence resolved 9/15/2007, one day after cath removal
ED showing significant improvement.
Occasional Success with Oral Meds
Success with BiMix

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, August 21, 2018 5:03 AM (GMT -6)
There are a total of 2,995,021 posts in 328,187 threads.
View Active Threads


Who's Online
This forum has 161311 registered members. Please welcome our newest member, krazykyle83.
202 Guest(s), 2 Registered Member(s) are currently online.  Details
Kent M., Saipan Paradise