Welcome to the Prostate Cancer Advocates Forum...PCAF
Please register yourself as a site member (free!) to take advantages of all the unique features and functionality of this site.
PCAF was launched in late-2013 as a non-profit social media site dedicated to helping men, and their caregivers, to become their own best advocates for fighting PROSTATE CANCER through knowledge and empowerment. Prostate Cancer ("PC") is a broad topic and some aspects may be controversial...but we don't shy away from the issues. We encourage you to ask questions and comment on any PC-related topics which are important to you. Our key expectation of YOU is that you maintain respect for the other members of our PCAF Community at all times. (We do also have a short list of other site rules posted HERE, and we respectfully asked you to review them, and agree to abide by them, prior to posting at our site.)
Prostate cancer is a serious topic (and a common bond), but we also hope to engage in some fun, share some of the highs and lows we experience in life, and get to know each other better at the site.
Again, "Welcome." Come on "in" by registering as a new member (in order to take advantage of all the site features), then create a brand new "thread" to introduce yourself. We wish you didn't have to be here; but since you are, you'll be glad you joined PCAF.
Tony Crispino site founder, PC survivor, patient advocate
PCAF has some unique "features" which differentiate it from other online forums:
In addition to a well-informed, lay “staff” of PC-advocates who are ready to “pay-it-forward” by sharing their own personal experiences and learnings, we have also enlisted a "MEDICAL PANEL" of trained professionals willing to engage in dialogue online. Read more about the MEDICAL PANEL in the next post…
Starting in June 2014, PCAF will sponsor, or co-sponsor, periodic free informative online "webinars" with leading experts about important prostate cancer-related topics. Pre-registration is required, and "seating" may be limited, but these valuable sessions will give you insight to the "latest-and-greatest" information...right from the expert's mouths! Watch for webinar announcements in "PCAF's 'Main' Discussion Board." Your questions will be solicited in advance, and the presentation material will be posted online afterwards. (You must be a registered PCAF member to view posted material.)
PCAF "Best Practices" thread (HERE). According to Wikipedia, a "best practice" is a method or technique that has consistently shown results superior to those achieved with other means, and that is used as a benchmark. At PCAF, the "staff" has assembled a ever-growing set of "Best Practices" for PC patients which we have primarily learned through the school-of-hard-knocks, and we wish to share these so that your own PC education journey is accelerated.
We believe we have selected the best available web tool (application) for hosting our site. Several of the PCAF "staff" have participated at other online forums that were limited by inferior capabilities. A few of the unique features available here are:
enhance your messages by using advanced editing and formatting capabilities
embedded images (up to 1mb) or video
the "Like" button
easy BBC code support, for you advanced users
Last Edit: Jun 16, 2014 12:07:16 GMT -8 by admin: updated by admin
Post by Tony Crispino on Jan 2, 2014 21:24:35 GMT -8
INFORMATION about the PCAF "MEDICAL PANEL" — effective June 2014
Somehow, at the age of 44, I was “blessed” (ha-ha) with the discovery of advanced prostate cancer.
Seriously, in the years since my initial diagnosis, I have been blessed to become familiar—through my own journey as a patient and as a patient advocate—with numerous skilled professionals trained and dedicated to improving the lives of men with PC.
As I planned the launch of PCAF, I envisioned a unique social media web site where these professionals could directly share their research findings with the site membership. Along the way, I enlisted the support of many of these doctors (M.D.’s and/or PhDs), and I am pleased to announce the launch of the PCAF Medical Panel, consisting of respected clinicians and researchers who specialize in prostate cancer to help answer your questions and empower you with information so that you may become “your own best advocate.”
We greatly appreciate and respect the time that our “Medical Panel” members offer at our site, and in order to make the most of their time we have established the following process guidelines for our members. Please do keep in mind that any feedback posted by Medical Panel members is considered to be general, evidence-based educational information, and is NOT a diagnosis and/or treatment recommendation.
The process is as easy as 1-2-3. Here’s how it works:
Got a question? Create a new thread. Ask your question. It’ll be helpful if somewhere in the thread you were to say something like, “This question is for the Medical Panel.”
At this point, one of two things may happen. Members of the Medical Panel who are monitoring the site may post a reply right away. Or, a PCAF moderator will reach-out to one or more of the Medical Panel members via email and ask them to post a reply.
Any other PCAF member may, of course, also post a reply to your thread at any time.
SOME IMPORTANT and HELPFUL GUIDELINES:
Help us to be appreciative and respectful of our Medical Panel members. This important, common-sense guidance will help to make this unique feature of PCAF endure and grow.
We recommend that all PCAF members create your own 1-page PC Case History (a PCAF “Best Practice”) and add it to your site profile signature. However, this step is especially valuable when posting to the Medical Panel because it provides a brief, concise background.
The PCAF site is NOT a substitute for the examination room. Your own doctor(s) with whom you have established a personal face-to-face physician-patient relationship with know your case best, and is (are) the only physician(s) qualified (and liable) to diagnose your case or prescribe treatment. Feedback or suggestions you may receive from the PCAF Medical Panel members is NOT a substitute for discussions patients should have with their own medical team.
Suggestion for “phrasing” questions. The PCAF staff felt that it would be helpful to offer one very clear, and perhaps all too common, illustrative example of how to, and how not to, phrase a question to the Medical Panel in order to avoid asking for prescriptive feedback:
HOW NOT TO ASK: “I had an RP last year and now my PSA is increasing. What should I do?”
HOW TO ASK: “I had an RP last year and now my PSA is increasing. What factors should I consider for immediate versus delayed salvage radiation therapy.”
SITE DISCLAIMER AND LIMITATION OF LIABILITY. Any feedback posted by Medical Panel members is considered to be general, evidence-based educational information, and is NOT a diagnosis and/or treatment recommendation. Any and all diagnosis and/or treatments should be prescribed only from physicians who have established a traditional face-to-face relationship with you, the patient.
Last Edit: Jun 16, 2014 13:19:52 GMT -8 by admin: refresh
Post by Tony Crispino on Mar 19, 2014 22:15:58 GMT -8
I would like to express my appreciation to the members of the PCAF Medical Panel (effective June 2014). This list is "fluid" and I hope it expands and grows over time:
Ian M. Thompson, MD : University of Texas Health and Sciences Center, San Antonio, TX. Bio Nicholas J. Vogelzang MD : WikipediaBio Evan Yu MD : University of Washington. Bio David McConkey PHd : MD Anderson Curriculum Vitae Brian Lawenda MD : 21st Century Oncology Las Vegas Bio Neeraj Agarwal MD : University of Utah Huntsman Cancer Center Bio Geo Espinosa PhD : New York University Langone Medical Center Urological Center. Nutritionist & Holistic Medicine Cathy Tangen, PhD Bio-statistition SWOG
I would also like to express my appreciation to the "staff" here at PCAF: John Thompson (a.k.a. "johnt"), Patient Advocate and Survivor Allen Edel (a.k.a. "Allen"), Patient Advocate and Survivor Kurt Conrath (a.k.a. "KC"), Patient Advocate and Survivor
Last Edit: Jun 17, 2014 10:15:23 GMT -8 by admin: refresh
On behalf of "Allen" and "johnt" (the other PCAF "staff" members), it is an honor to be here supporting Tony in this social media/PC support endeavor which has become PCAF, and to be able to "pay it forward" to others as they enter this new phase of their lives as a prostate cancer patient/survivor.
Many of us "lay" persons have become knowledgeable about PC through the school-of-hard-knocks. But I (and many others) are indebted to the knowledge and experience of others who gave me counsel, especially in those first few scary weeks/months after diagnosis. They were “paying it forward.” As I am not able to “pay them back,” I do look to “pay it forward” with like knowledge, experience and wisdom to others...by participating here at PCAF.
Having some, and perhaps more than the average, interest in history, I found this letter by Benjamin Franklin interesting. It was written while Franklin lived in Paris (for 9 years, through the duration of the Revolutionary War) as he helped another American he met get re-started life after a rough patch. The letter conveys Franklin's concept of “pay it forward":
Passy [outside Paris; now absorbed into Paris], April 22d, 1784
I received yours of the 15th Instant [the current month], and the Memorial it inclosed. The account they give of your situation grieves me. I send you herewith a Bill for Ten Louis d’ors [French money]. I do not pretend to give such a Sum; I only lend it to you. When you shall return to your Country with a good Character, you cannot fail of getting into some Business, that will in time enable you to pay all your Debts. In that Case, when you meet with another honest Man in similar Distress, you must pay me by lending this Sum to him; enjoining him to discharge the Debt by a like operation, when he shall be able, and shall meet with another opportunity. I hope it may thus go thro' many hands, before it meets with a Knave that will stop its Progress. This is a trick of mine for doing a deal of good with a little money. I am not rich enough to afford much in good works, and so am obliged to be cunning and make the most of a little. With best wishes for the success of your Memorial, and your future prosperity, I am, dear Sir, your most obedient servant,