What We Talk About In The CSN Prostate Cancer Forum

Kongo
Kongo Member Posts: 1,166 Member
edited February 2011 in Prostate Cancer #1
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
«1

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Interesting
    So, almost one of five are posting here with treatment option concerns......that these people stil have questions after seeing their medical professionals....that these questions are still unanswered....so it may be that the medical "experts" are not answering the patient concerns, and there is a need for better information to the patient that one can be comfortable with in choosing a treatment option..

    I'm thinking thet the posts here probably has some correllation with the demographics of prostate patients.........for example demographically the majority of patients get surgery....the majority of posters here are talking about surgery.

    Although the numbers of people posting are not stastically reresentative of prosate cancer patients.........general attitutes and a consensus of lay person knowledge are shown in posts for each of the categories mentioned
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    LOL!
    Hey, Kongo:

    Thanks for this very interesting statistical summary. That must have been a really BORING conference to enable you to compile this info by reviewing SIX f***ing THOUSAND posts over the past 12 months.

    If it were me, I would have just been listening to my iPod and playing solitaire on it to while away the time.

    ROTFLMAO!!!!
  • VascodaGama
    VascodaGama Member Posts: 3,495 Member

    LOL!
    Hey, Kongo:

    Thanks for this very interesting statistical summary. That must have been a really BORING conference to enable you to compile this info by reviewing SIX f***ing THOUSAND posts over the past 12 months.

    If it were me, I would have just been listening to my iPod and playing solitaire on it to while away the time.

    ROTFLMAO!!!!

    The greatness of this forum
    I appreciate your work. It shows the greatness of this forum and of its members, in dealing with the problematic prostate cancer.

    What a “book” !!!

    Thanks
  • silverfox1
    silverfox1 Member Posts: 36
    Your info validates my experience with Uro and treatment advice
    Kongo,
    Just wanted to update you on my journey. It has been two weeks since I left the hospital from my bout with sepsis and ecoli. Am back on track for my CK treatment. Met with my Radiation Oncologist and will tentatively start CK on Feb.14th!! All the docs. are being very careful on my treatment schedule as they know what I went through and the beating my body took. Great news, had a heart cath procedure completed as the docs where concerned about the enzyme elavation while in ICU. Got a clean bill of health, no damage to the heart muscle and no follow up needed.

    Just wanted to share my progress and good news...looking forward to getting my treatments started.
  • ProfWagstaff
    ProfWagstaff Member Posts: 98
    Not surprised
    I'm not surprised that treatment options ranged as high as it did. There's still a lot of confusion in this field about the different options available and when each is most appropriate. My brother's urologist, in discussing his PCa treatment options actually told him, "The real experts are the guys who've gone through it already." So I guess that was a backhanded recommendation of this board.
  • Kongo
    Kongo Member Posts: 1,166 Member

    Your info validates my experience with Uro and treatment advice
    Kongo,
    Just wanted to update you on my journey. It has been two weeks since I left the hospital from my bout with sepsis and ecoli. Am back on track for my CK treatment. Met with my Radiation Oncologist and will tentatively start CK on Feb.14th!! All the docs. are being very careful on my treatment schedule as they know what I went through and the beating my body took. Great news, had a heart cath procedure completed as the docs where concerned about the enzyme elavation while in ICU. Got a clean bill of health, no damage to the heart muscle and no follow up needed.

    Just wanted to share my progress and good news...looking forward to getting my treatments started.

    Silverfox
    Thanks for the update and I'm glad that you're back on track and have recovered from your encunter with sepsis. Keep us posted and hopefully no more detours!

    K
  • mrspjd
    mrspjd Member Posts: 694 Member

    Not surprised
    I'm not surprised that treatment options ranged as high as it did. There's still a lot of confusion in this field about the different options available and when each is most appropriate. My brother's urologist, in discussing his PCa treatment options actually told him, "The real experts are the guys who've gone through it already." So I guess that was a backhanded recommendation of this board.

    ProfW
    Haven't seen a post from you (maybe I missed it?) since you discussed your tx options, including clinical trial consideration, once recurrence was confirmed. If you don't mind me inquiring, did you elect to enroll in a clinical trial or ? Either way, hope the tx is going well.
    All the best,
    mrs pjd
  • Will_10_2010
    Will_10_2010 Member Posts: 43
    Kongo,
    Thanks for all he

    Kongo,
    Thanks for all he detailed work. The next time you have a conference call, let me know and i'll send you information so you can do my taxes.
    Your research just shows how important this site and its contributers are !!
  • kddh
    kddh Member Posts: 14

    Kongo,
    Thanks for all he

    Kongo,
    Thanks for all he detailed work. The next time you have a conference call, let me know and i'll send you information so you can do my taxes.
    Your research just shows how important this site and its contributers are !!

    Chiming In for First Time
    This compilation from Kongo is my inspiration to finally chime in. Since my diagnosis in Sept 2010, I have been reading these posts and just wanted to say hello , and thanks, to you all. I'm hoping to make up my own mind about treatment soon.
  • ob66
    ob66 Member Posts: 227 Member
    Kongoisms and the like
    The PCa network is one of a number I am on. Others deal with grandchildren activities and my alma mater in sports. But I must admit a couple of things. You tweak my curiosity maximally. Despite your denial, your posts are so lengthy and authoritative such that I am convinced you are either appointed or a self annointed board moderator. One cannot post with such certainty unless there is a valid background, and you do it in the areas that pertain to your PCa as well as a multitude more (your range or scope is overwhelming). If you are not a PCa specialist, you are close. Secondly, you do not seem to have been involved with PCa for that long, so your knowledge is over the top for a limited time period. And thirdly, and that which we all appreciate, you seem to respond empathetically and at length to all new posters, consuming a lot of your energy and time. I look forward to meeting you some day were our paths to cross in SoCal. In the meantime the "mystery Kongo" is fun along with being informative. Maybe an honorary degree on the board is in order. Cheers and many thanks, Bob
  • ProfWagstaff
    ProfWagstaff Member Posts: 98
    mrspjd said:

    ProfW
    Haven't seen a post from you (maybe I missed it?) since you discussed your tx options, including clinical trial consideration, once recurrence was confirmed. If you don't mind me inquiring, did you elect to enroll in a clinical trial or ? Either way, hope the tx is going well.
    All the best,
    mrs pjd

    Thanks for asking...
    I've been lurking here occasionally but not posting much as I wait for treatments to begin. I thought over and over about the options and still hadn't decided when I went to see my RadOnc. When he asked me if I decided I asked him, "In a vacuum, if there was no protocol going on, what would have been your recommendation to me for treatment?" He said that was an excellent question and said based on teh scan results and my history, he would have recommended radiation of the prostate bed and that's all. Since partcipation in the study would have required randomization of treatment, I opted out. I didn't want to take a chance on the computer assigning me to 3 months of hormone therapy and/or pelvic lymph node radiation in addition to prostate bed radiation if my own RadOnc would not have recommended it. All treatments carry risks and I didn't want to subject myself to additional risks if there did not seem to be a benefit to my case. As much as I want to help advance the research in this field, I didn't want to expose myself to more potential risks to do it. If I could have participated in the study with my own treatmewnt option decided, I'd have done it in a heartbeat. As it is, I still feel somewhat hypocritical for not joining. As an aside...my first IMRT session is today.
  • mrspjd
    mrspjd Member Posts: 694 Member

    Thanks for asking...
    I've been lurking here occasionally but not posting much as I wait for treatments to begin. I thought over and over about the options and still hadn't decided when I went to see my RadOnc. When he asked me if I decided I asked him, "In a vacuum, if there was no protocol going on, what would have been your recommendation to me for treatment?" He said that was an excellent question and said based on teh scan results and my history, he would have recommended radiation of the prostate bed and that's all. Since partcipation in the study would have required randomization of treatment, I opted out. I didn't want to take a chance on the computer assigning me to 3 months of hormone therapy and/or pelvic lymph node radiation in addition to prostate bed radiation if my own RadOnc would not have recommended it. All treatments carry risks and I didn't want to subject myself to additional risks if there did not seem to be a benefit to my case. As much as I want to help advance the research in this field, I didn't want to expose myself to more potential risks to do it. If I could have participated in the study with my own treatmewnt option decided, I'd have done it in a heartbeat. As it is, I still feel somewhat hypocritical for not joining. As an aside...my first IMRT session is today.

    Good Luck Today
    Prof,

    Thanks and really appreciate the update. Your post/reasoning indicates that you have given careful consideration to all your options and made the best decision that was right for you. This is very much in line with what I often write ("preach?") about--only you can be your own best advocate when it comes to PCa info/education/decisions, etc. While I understand your hypocritical feelings related to not enrolling in the clinical trial, don't beat yourself up about it too much. That energy and thinking will be better spent believing and knowing that you made a choice that is right for YOU, as that is what is most important now.

    All the very best.
  • Kongo
    Kongo Member Posts: 1,166 Member
    kddh said:

    Chiming In for First Time
    This compilation from Kongo is my inspiration to finally chime in. Since my diagnosis in Sept 2010, I have been reading these posts and just wanted to say hello , and thanks, to you all. I'm hoping to make up my own mind about treatment soon.

    Welcome!
    kddh,

    Welcome to the forum and we're glad you finally decided to post. This forum is as great place to seek advice, share experiences, and pass along lessons learned in the fight against prostate cancer.

    Hope to hear more of you soon.

    K
  • Kongo
    Kongo Member Posts: 1,166 Member

    Thanks for asking...
    I've been lurking here occasionally but not posting much as I wait for treatments to begin. I thought over and over about the options and still hadn't decided when I went to see my RadOnc. When he asked me if I decided I asked him, "In a vacuum, if there was no protocol going on, what would have been your recommendation to me for treatment?" He said that was an excellent question and said based on teh scan results and my history, he would have recommended radiation of the prostate bed and that's all. Since partcipation in the study would have required randomization of treatment, I opted out. I didn't want to take a chance on the computer assigning me to 3 months of hormone therapy and/or pelvic lymph node radiation in addition to prostate bed radiation if my own RadOnc would not have recommended it. All treatments carry risks and I didn't want to subject myself to additional risks if there did not seem to be a benefit to my case. As much as I want to help advance the research in this field, I didn't want to expose myself to more potential risks to do it. If I could have participated in the study with my own treatmewnt option decided, I'd have done it in a heartbeat. As it is, I still feel somewhat hypocritical for not joining. As an aside...my first IMRT session is today.

    Feelings
    Professor,

    I wouldn’t feel hypocritical in the least. You must always be governed by doing what is best for you. If you can do that and help the overarching body of knowledge then that’s a good thing but at the end of the day only you can decide what is best for you. We all understand.

    I am in a clinical trial myself but it’s not randomized and I wouldn’t have signed up for a randomized study if it impacted in any way exactly what I wanted done to myself. I think one of the reasons that there is such a paucity of truly randomized studies that compare treatment options is that most men will make exactly the kind of decision you did and since it’s virtually impossible to find a large enough cohort of men with exactly the same age, physical condition, cancer stage, Gleason score, severity of existing symptoms, prostate size, and so forth I often wonder what the point would be anyway as these studies can never truly compare apples to apples or oranges to oranges. Maybe you can do it in a study with animals like mice, but even then someone would say…”well, that’s just a mouse study.”

    I think you did the right thing.

    Best wishes for a successful and hassle free treatment regimen.

    Best,

    K
  • mrspjd
    mrspjd Member Posts: 694 Member
    entertainment feature?
    Nice to know that the CSN PCa forum can serve a dual purpose by providing important PCa feedback as well as being a useful entertainment distraction feature for boring conf calls. Will you also be creating a forum synopsis for the HW PCa site during your next conf call? Inquiring minds want to know--not really ;)

    Thx for compiling the recent yearly forum statistical analysis! Glad we could all be of service!
    Best,
    mrs pjd
  • kddh
    kddh Member Posts: 14
    Kongo said:

    Welcome!
    kddh,

    Welcome to the forum and we're glad you finally decided to post. This forum is as great place to seek advice, share experiences, and pass along lessons learned in the fight against prostate cancer.

    Hope to hear more of you soon.

    K

    Thanks for your welcome, Kongo, as well as all the information shared. I am a pretty typical Gleason 3+3. Age 59. Diagnosed last August, I got very sick from infection after the biopsy. That is presumably why my PSA went from 6 to 14.9 in 4 months! It then headed back down, but I am hovering between the 9's and 10's.

    I looked into Da Vinci, but both surgeons were frank that my weight (240) made me a "good" candidate for significant incontinence.

    So I'm going to a brachytherapy class tomorrow. It seems like that has the lightest side effects of the standard treatments, yes? Except for setting off metal detectors, and I don't like to fly anyway.

    I am a longtime Kaiser member but I did start with Blue Cross for 2011 and have an appt. at UCSF in late February with Dr Gottschalk for potential CyberKnife.

    I will have to do some serious thinking about costs/benefits. Kaiser may have its limitations but the price is right.

    kddh
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    kddh said:

    Thanks for your welcome, Kongo, as well as all the information shared. I am a pretty typical Gleason 3+3. Age 59. Diagnosed last August, I got very sick from infection after the biopsy. That is presumably why my PSA went from 6 to 14.9 in 4 months! It then headed back down, but I am hovering between the 9's and 10's.

    I looked into Da Vinci, but both surgeons were frank that my weight (240) made me a "good" candidate for significant incontinence.

    So I'm going to a brachytherapy class tomorrow. It seems like that has the lightest side effects of the standard treatments, yes? Except for setting off metal detectors, and I don't like to fly anyway.

    I am a longtime Kaiser member but I did start with Blue Cross for 2011 and have an appt. at UCSF in late February with Dr Gottschalk for potential CyberKnife.

    I will have to do some serious thinking about costs/benefits. Kaiser may have its limitations but the price is right.

    kddh

    Say Hello to Dr. G
    Are you still a Kaiser member?

    I was a lifelong member until I switched to Blue Shield so that I so that I could get CyberKnife treatment from Dr. Gottschalk in Sept 2010.

    Dr. G is nice answers all questions but he's laconic and doesn't volunteer much info. So, if you have questions, make sure you have them all written down so that you don't forget anything.

    Good luck!!
  • kddh
    kddh Member Posts: 14

    Say Hello to Dr. G
    Are you still a Kaiser member?

    I was a lifelong member until I switched to Blue Shield so that I so that I could get CyberKnife treatment from Dr. Gottschalk in Sept 2010.

    Dr. G is nice answers all questions but he's laconic and doesn't volunteer much info. So, if you have questions, make sure you have them all written down so that you don't forget anything.

    Good luck!!

    Saying Hello
    Yes, I followed your posts last year about Kaiser/CK etc with great interest. Thanks for the advice on Dr G.
    I still have Kaiser (paid by partner's employer); added Blue Cross (from my own employer). I don't really know if that will work out or if one of the two will throw me out!

    Thank you!
  • mrspjd
    mrspjd Member Posts: 694 Member
    Kongo said:

    Feelings
    Professor,

    I wouldn’t feel hypocritical in the least. You must always be governed by doing what is best for you. If you can do that and help the overarching body of knowledge then that’s a good thing but at the end of the day only you can decide what is best for you. We all understand.

    I am in a clinical trial myself but it’s not randomized and I wouldn’t have signed up for a randomized study if it impacted in any way exactly what I wanted done to myself. I think one of the reasons that there is such a paucity of truly randomized studies that compare treatment options is that most men will make exactly the kind of decision you did and since it’s virtually impossible to find a large enough cohort of men with exactly the same age, physical condition, cancer stage, Gleason score, severity of existing symptoms, prostate size, and so forth I often wonder what the point would be anyway as these studies can never truly compare apples to apples or oranges to oranges. Maybe you can do it in a study with animals like mice, but even then someone would say…”well, that’s just a mouse study.”

    I think you did the right thing.

    Best wishes for a successful and hassle free treatment regimen.

    Best,

    K

    radomized clinical trials
    First, it is important to state that this post is in no way meant to confer judgment upon anyone’s decision to opt out of, or to not enroll in, any clinical trial, be it randomized or other. That is truly an individual & personal decision. However, it is important to understand how critical randomized trials are in the medical/scientific community for the rest of us. Research data gleaned from such trials take us forward into the future with new trials that build on previous ones. I’m in no way suggesting that humans should be used as mice or experimented upon but, data sources have to start somewhere, especially after significant research results have been attained from other animal species.

    Hats off to the brave men and women who have boldly & bravely elected to participate in randomized clinical trials because they are the ones that pave the way for better/newer successful treatments for the rest of us. And in particular, thanks to those men (some of whom have posted on this discussion forum) who have volunteered to participate in randomized clinical PCa trials, not knowing whether they were receiving the “real” treatment or the “placebo” treatment. IMHO, they are the real unsung heroes of the PCa world.
  • ProfWagstaff
    ProfWagstaff Member Posts: 98
    Kongo said:

    Feelings
    Professor,

    I wouldn’t feel hypocritical in the least. You must always be governed by doing what is best for you. If you can do that and help the overarching body of knowledge then that’s a good thing but at the end of the day only you can decide what is best for you. We all understand.

    I am in a clinical trial myself but it’s not randomized and I wouldn’t have signed up for a randomized study if it impacted in any way exactly what I wanted done to myself. I think one of the reasons that there is such a paucity of truly randomized studies that compare treatment options is that most men will make exactly the kind of decision you did and since it’s virtually impossible to find a large enough cohort of men with exactly the same age, physical condition, cancer stage, Gleason score, severity of existing symptoms, prostate size, and so forth I often wonder what the point would be anyway as these studies can never truly compare apples to apples or oranges to oranges. Maybe you can do it in a study with animals like mice, but even then someone would say…”well, that’s just a mouse study.”

    I think you did the right thing.

    Best wishes for a successful and hassle free treatment regimen.

    Best,

    K

    Thanks, Kongo and Mrspjd
    I feel much better about my decision. Thanks for the support. First treatment went very uneventfully. I just hope it's working.