What We Talk About In The CSN Prostate Cancer Forum

While sitting through a mind numbing 3-hour conference call this morning with colleagues from the East Coast, I kept myself amused by going back through roughly a year’s worth of postings on the ACS Prostate Cancer Forum to try to determine what it is we specifically talk about.

I looked at over 6,000 postings in individual threads that went back 12 months to early February 2010 and tried to bucket the threads into different categories that pertain to our prostate cancer discussions. What struck me almost immediately is the wide variety of topics that we address amongst ourselves. Initially I thought I could have a relatively small number of categories but that became too hard and I ended up expanding the categories to be as inclusive and meaningful as possible.

Here’s what I came up with:

TREATMENT OPTIONS: Not surprisingly, the largest discussion category in our forum pertains to the different types of treatment options those of with prostate cancer must sort out as we deal with our disease. 1,131 postings or 18% of our conversations have to deal with different types of surgery, radiation, AS, or other treatment protocols. Although I didn’t keep score, by far the most discussed topics were related to surgery and most of these were about the virtues (or lack thereof) of robotic surgery. Following surgery were radiation options and most of these centered about IMRT, followed by other methods such as brachytherapy, CyberKnife, and EBRT in general. Other treatments behind radiation was Active Surveillance followed by HIFU discussions.

NEWLY DIAGNOSED: The second highest category was new posters entering the forum seeking advice after a diagnosis of prostate cancer. 889 or 15% of postings over the last year were from newly diagnosed men (or wives) and the responses regular forum members provided. Interestingly, this category had the highest mean number of responses per thread, indicating (to me at least) that we have an extremely welcoming forum that offers a great deal of advice, sympathy, and experience to newly diagnosed patients and their families.

INCONTINENCE: The third busiest topic dealt with incontinence and involved 746 or 12% of our discussions, although to be fair there were a few threads that accounted for fairly high numbers of responses. INCONTINENCE dealt with things such as artificial sphincters, pads, incontinence treatments, and so forth.

PROGRESS REPORTS: Shortly behind incontinence at 708 (12%) were postings about individual progress in treatments. Most of us do a pretty good job of reporting back the results of our treatment which elicit a lot of congratulatory high-fives and in some cases sympathy.

TECHNICAL QUESTIONS about the anatomy of the prostate, biopsies, surgical recovery questions and anomalies, PSA confusion, surgical techniques, radiation dosage queries, and so forth accounted for 8% of our discussion.

ERECTILE DYSFUNCTION accounted for 6% of our discussion over the past year. This included topics such as pumps, drugs, techniques, and so forth to recover lost potency after treatment.

PCa RECURRENCE/RISING PSA postings accounted for 5% of our discussion although it is interesting to note that there was a much higher frequency of these postings in the past six months than 6-12 months ago.

I broke HORMONE THERAPY down as a separate topic and it accounted for 5% of all of our postings.

We talked about diet or supplements 4% of the time, with the largest number of postings pertaining to discussions of dairy and red meat.

ADVANCED PCA, STUDIES AND NEWS REPORTS, and INSURANCE/DOCTOR questions each accounted for 3%.

The final bucket was something I called OTHER and included such things as Happy Father’s Day wishes, inspirational postings, general thank-you notes, and announcements about prostate cancer month activities. This group accounted for 8% of our discussion.

My impression, which I did not break down specifically, is that the majority of posters here has either had surgery or is leaning toward surgery.

Not sure if any of this means anything but I thought it was interesting. (And it got me through a long, boring conference call)

Best,

K