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  • Prostate Cancer Advocacy Groups - They Do Exist, But ..

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    Old 10-25-2020, 01:50 PM   #1
    IADT3since2000
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    Thumbs up Prostate Cancer Advocacy Groups - They Do Exist, But ..

    Yesterday, on the thread “Screening for Prostate Cancer,” guitarhillbilly brought up the fact that we in the prostate cancer community have no advocacy group that gives us the gives us the prominence in public attention like the the prominence achieved by the breast cancer community (or AIDS community, another highly successful group). Advocacy and opportunities to advocate are important, so let’s initiate this new thread devoted to advocacy.

    Guitarhillbilly wrote on the screening thread:

    Quote:
    Originally Posted by guitarhillbilly View Post
    ...There appears to be no high profile Advocacy Group for PCa. I never see TV or hear radio spots or never see any billboards addressing the importance of early detection for PCa. I live in a Metro area of approx. 750,000 people.

    In contrast I hear about this everywhere:

    "Every October is Breast Cancer Awareness Month, an opportunity to spread awareness about the disease that kills nearly 41,000 women each year."

    The awareness mission is very good for breast cancer and should be the very same for Prostate Cancer....
    I sure understand where you are coming from: we get nowhere near the attention that breast cancer gets. I knew this from observations like yours and also from statistics, but one spring really brought it home. I had participated in a regional Washington, DC metro area prostate cancer run/walk event sponsored by a local advocacy group. My estimate is that we had about a hundred walk and run participants, and perhaps another fifty staff, sponsors and onlookers - not exactly minute, but not a sizeable crowd either, and zero media coverage. Weeks later I was invited to speak about prostate cancer to a breast cancer survivor’s group that was in DC for the huge annual DC version of the Susan G. Komen Race for the Cure for breast cancer. Going in on the Metro subway, the cars were crowded with passengers in their Race for the Cure shirts. My recollection is that 30,000 racers and supporters participated in the event. There was heavy broadcast and print media coverage of the event, including video and photos. It seems it’s that way every year: heavy emphasis on breast cancer with the ubiquitous and well known pink ribbons, and little for prostate cancer, with people often asking me what that light blue ribbon is for. If you didn’t know, it’s our ribbon for prostate cancer and has been for more than twenty years. Those disparate levels of enthusiasm are reflected in research support from the US government. So unfair. But wait: there’s a reality that’s even more unfair, and guess who it favors? Answer below. Actually, I’m not upset at all that breast cancer is heavily funded; after all, breast cancer targets our wives, sweethearts, mothers, sisters, and daughters, even some men, and serious cases tend to occur much earlier than for prostate cancer.

    There are actually several prostate cancer advocacy groups with a national footprint, and numerous others. Perhaps the most prominent for legislative advocacy is Zero, at Zero.org; it also sponsors run/walks in cities around the US and offers important services to patients.


    Another is ustoo.org, a US based international group that involves some advocacy but mainly focuses on prostate cancer education and support, including sponsorship of a huge number of support groups, including my own local chapter.

    A well-known national advocacy group with a special focus on African Americans is the Prostate Health Education Network (PHEN), founded in 2003.

    Most US states have “state prostate cancer coalitions, and they loosely operate under the umbrella of the National Association of State Prostate Cancer Coalitions. All that I know of have no paid staff; they are run by people just like you and me. Some of the state coalitions are vigorous, and others are more like social groups that emphasize talk with very little action; many are hungry for leadership and dedicated volunteers. The state coalitions sponsor advocacy within their states, and together they advocate nationally, including an annual visit to Congress, which, in addition to national institutes and centers that research cancer, sponsors the Congressionally Directed Medical Research Program (CDMRP). The CDMRP sponsors the Prostate Cancer Research Program (PCRP), which last year spent $100,000,000 in support of prostate cancer research. Zero plays a substantial role in ongoing representation of our interests to Congress, and much of the success in retaining and increasing that needed high level of CDMRP PCRP funding is due to its efforts.. State coalitions have also advocated for research at FDA advisory committee hearings. This thread stems from the one on screening, and my own view is that the NASPCC has been much to conservative, even timid, in its support of screening and active surveillance, though my impression, my hope, is that it is doing better recently.

    Another organization, the Prostate Cancer Foundation, primarily funds research, but it also is involved in some advocacy efforts.

    These are some of the main national advocacy groups I know of. Perhaps other participants know of others.

    So unfair. Back to that so unfair reality mentioned above. You would think that, with that enormous energy and dedication shown by our women for breast cancer research, there should be tremendous progress in preventing and treating breast cancer. Well, there has been good progress. But guess which cancer patients enjoy amazing research success, which is translating into treatments and outstanding survival, best of any major cancer? It’s us! Lazy us, who don’t march or advocate in anywhere near the numbers that women do. The key is PSA: as a quite useful tool for detection and an excellent (though not perfect) tool for monitoring and assessing research outcomes, thereby accelerating progress. It is simply amazing! No other cancer has anything nearly as good. Based on successful PSA assisted research, it’s like prostate cancer treatments can be delivered after precise threat detection and, sort of like the precision airborne missiles that can fly through a target as tiny as a window and deliver their carefully tailored payloads. To continue the analogy, breast cancer treatments lack that precision; while improving, treatments for breast and other cancers are more akin to World War II mass carpet bombing where a stealthy target might or might not be hit and there’s a lot of collateral damage. That means that a smaller amount of funding for prostate cancer research can punch well above its weight. This is one of those areas where it's good to be a guy!

    That said, breast cancer advocacy is so powerful that it has actually resulted at times in alteration of US Preventive Services Task Force guidelines on mammogram screening where we have been unable to get USPSTF treatment as favorable despite having stronger evidence than the breast cancer community!

    At least we have a designated month: September is actually prostate cancer awareness month, and it does get a modest amount of participation by those concerned and by the media. But we are not limited by the calendar in our advocacy efforts. All groups will be able to do more if they get more support and participation from people like you and me, and that definitely includes our female loved ones who are concerned about a disease they will never get personally.

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 9/4/2020). (Current T 128 9/4/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education.

     
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    Old 10-25-2020, 03:08 PM   #2
    guitarhillbilly
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    Re: Prostate Cancer Advocacy Groups - They Do Exist, But ..

    IADT3since2000:

    As usual I appreciate your thoughtful and informative postings.

    Every October Susan G Komen pink ribbons are all over my workplace and my Employers website opening page is changed to a pink color. They even put the pink ribbon decals on our aircraft. [ I work for a major airline ]
    This all is very good and should be promoted.

    Unfortunately Just don't see any high profile messaging about PCa in the general Public and mass media anytime soon.
    Never even heard of or seen the Light Blue Ribbon for Prostate Cancer Awareness. If I as a PCa survivor don't even know about the Groups and Light blue ribbons how much more does the general public not even know about it?
    Got to have some good marketing at some point or we will just continue to spin our wheels in a mud hole.

    Bet I still won't see any light blue ribbons on the airplanes next year or the website opening page changed to light blue color in September.


    I'm one person and do talk to men individually about routine PSA testing in my workplace. I do not have the money to purchase TV and Radio time for advocacy advertisement.
    Someone with the means needs to step forward.


    https://gis.cdc.gov/Cancer/USCS/DataViz.html

    "In 2017, the latest year for which incidence data are available, in the United States, 207,430 new cases of Prostate Cancer were reported among men, and 30,486 men died of this cancer. For every 100,000 men, 107 new Prostate Cancer cases were reported and 19 men died of this cancer."
    __________________
    T2a / Gleason Score 8 / PSA at Diagnosis 6.9 /
    1-5 aggressive score : 4
    12 cores= 4 positive
    NBS = Negative
    Pelvic CT= Negative
    Pelvic MRI= Negative
    Age at Diagnosis= 60-65 age group
    Completed 42 IMRT Sessions
    Lupron scheduled for 2 years [Started DEC 2019]

     
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    Old 10-26-2020, 07:08 AM   #3
    JWPMP
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    Re: Prostate Cancer Advocacy Groups - They Do Exist, But ..

    September 16 was Prostate Cancer Awareness Day at work...first time ever. It just listed symptoms and statistics. Nothing about talking to your doctor about PSA testing.
    But I guess it's a start.
    Just don't understand the underplay.
    Since Jim's been diagnosed i cannot believe the people we know that have been through it, or know someone etc etc. It's astonishing!!
    Yet still it's all under the radar.
    Paula

     
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    Old 10-26-2020, 06:26 PM   #4
    Southsider170
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    Re: Prostate Cancer Advocacy Groups - They Do Exist, But ..

    A dozen years ago, before I was diagnosed, a young lady at my job here in Pittsburgh was working on Prostate Awareness and they reached out to barbershops where men hung out to promote prostate screening.

    I don't know if the program is still around.

     
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