The leaf from a distance looks like Penelope’s tongue doesn’t it?
Don’t over cogitate about me being a urologist or that I have a book on amazon about prostate cancer. If it were not for the book there would be no blog. Before I had written the book I pretty much had never gone on the internet to read anything about prostate cancer. I get the Journal of Urology monthly, which I read, and I do CME monthly on various topics by a service called Practical Reviews in Urology. I got the idea for a blog by the blog Prostablog a guy in New Zealand. I copied his theme on WordPress and then sort of developed my own niche. My niche is a mixture of information but presented in sometimes a controversial way, sometimes humorous and self deprecating, sometimes to just to provoke thought. I love dogs, I love the thousands of pictures I’ve taken of my dogs and by virtue of my mother, I love sayings. So a dog picture, a saying and then a Will Rogers type commentary on an item of the day in the news or an issue that repeatedly comes up on the searches that get to my blog. I have around 200 google phrases a day that end up here. The beauty of this is that I, unlike many urologists who are like I was before the book, rarely sense the pulse of the prostate cancer community. Also I don’t really care if you feel my presentation is professional or even academic in nature. There are a thousand places like that out there, few however add the other elements which I have alluded too. Think of having the ability to talk to your urologist at party and you got to the essence of issues about prostate cancer in general and your situation in particular.
What have I learned?
- Epidemiologists like Otis Brawley and the American Cancer Society and the USPSTF (or whatever the hell the letters are) have an agenda to affect how physicians diagnose, manage and treat prostate cancer. It is money driven and a forboder (is that a word?) of health care to come specifically a National Health Care program.
- These people would rather treat late prostate cancer than diagnose it early, the only reason I can come up with is the former is less expensive…i.e. there are fewer late prostate cancers out there than trying to diagnosis the masses to prevent or find early. Why do I say this? Where is the outcry about Provenge? Hmmmmmmm.
- A lot of patients hate their urologist and think any decision or advice he gives is money driven the angst and hatred I have read has probably surprised me more than anything I have learned. As a rule (excess of 95%d) I love my patients and I think they feel I give them a “straight up” appraisal of their situation and what their options are.
- I have warmed to Active surveillance
- People are enamored with new procedures to the point that after having had that new procedure will discount any complication they may have from it. See my cartoon, “The Robot Got My Prostate.”
- There are sincere patient advocates out there that do a wonderful job trying to make a difference and inform people looking for info on the internet. ( I don’t view myself this way…I am sort of helping but from a non traditional way i.e. podcast, cartoons, humor etc…)
- K.Cass with Redsock Campaign and the new prostate cancer info link come to mind…
- The most poignant thing I’ve learned and seen is the devastating consequence that the late diagnosis of prostate cancer has had on men and their families. The comment section on the American Cancer Society’s Website is filled with honest questions from men suffering from this disease. Some ask questions and give their history searching for answers. I as a urologist who has seen this play out (based on PSA, Gleason’s score, other medical history that they often give) many many times have the answer to their questions (i.e. what does this mean) but in no way would answer their questions. What I mean to say is that they don’t know the gravity of their situation and are asking other patients on that site.
- Finally, although there are more the most dramatic thing I learned was early on when I tried to be of help on one of the message boards…I mean I knew all the answers to all the questions by virtue of having had the disease, been treated for it, had the complications of the treatment and not only that had treated the disease for over twenty years… What was the result this…I was kicked off two message boards and the moderators congratulated each other on the site for “catching” that sorry old urologist trying to sell his book on our site. “Doesn’t he make enough money removing prostates that don’t need to be removed to have to resort to coming on our site and taking advantage of our prostate cancer patients?” On the site one moderator even said to the other, ” Great pick up Joe…you nabbed him.” Who do the moderators think they are? Truth detectors? Could it be that they are the ones doing harm?
Oh yea…how to use the site…well…. the posts from time to time are good I think but apart from that here’s what you do:
- In the right column are links to everything conceivable, blogs, sites, hospitals etc…a weeks worth of reading.
- An RSS feed on prostate cancer updated almost hourly, current news and info
- 20 or so podcasts on various subjects by yours truly—not the last word but a word from my perspective-put into your prostate cancer soup to add flavor
- 30 illustrations that highlight concepts to help in your decision-making
- The twitter link has linked to it about 15 other RSS feeds from all over to include the infolink, ACS comments, Topix, medical news…to date there have been over 15,000 news articles tweeted there
- At the top there are pages for wifes and partners, how I made my decision as a urologist, funny things that happened to me during my treatment, excerpts from the book etc
- A cartoon on the site-Myths and Misconceptions about prostate cancer is entertaining yet informative…there have been over 1800 views on you tube.
- Links to prostate humor
- Finally you can see the most popular posts…ie subjects that others found helpful
The posts daily like this one is just the gravy… something light, a way to look at stuff from a “tangential angle.”
A guy recently commented that he did not get my blog and that I dropped paragraphs…he actually is right…like right now…I am stopping and as Forrest Gump said I think,
“thats about all I am going to say about that.”
One Reply to “how to use the prostate cancer blog prostate diaries-an informative yet slightly irreverent and eclectic guide for the prostate cancer patient.”
John, as I have repeatedly said, “Urologists aren’t psychologists and have no training on how to address sexuality issues.” These personal questions on “how often do you have sex” are hard to ask given how protective people, especially men, when it comes to this issue. It is up to the patients to develop questions they should ask their treating physician. Dr Debbie Feldman Stewart, Queens University, Canda has developed a booklet ‘Treatment choices for early-stage Prostate Cancer in 2008. Patient questions; Doctors answers.’ I strongly recommend this booklet if only to circle the questions you have and to ask your treating physician about your personal concerns.