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What We Talk About In The CSN Prostate Cancer Forum

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

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

hopeful and opt...
Posts: 1278
Joined: Apr 2009

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

gumbyrun's picture
gumbyrun
Posts: 52
Joined: Dec 2009

Perhaps. But I have always posted questions and comments to this forum late at night when I am alone, thinking about what lies ahead and what has passed. I like my urologist but I wouldn't call him at 10:57 PM on a Sunday night.
Coming up on 1 year anniversary of DaVinci surgery in Feb 26th. "What a long strange trip it's been."

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

You're spot on, Ira, when you indicate that the people posting are not statistically representative of prostate cancer patients or someone else as many of these posts are from wives, siblings, children, or friends of PCa patients. I would also opine that the vast majority of cancer patients never post on a forum such as this and that most men pretty much do what their doctor's tell them to do. I believe those who find their way to these types of forums are seeking additional knowledge or perhaps aren't satisfied with their doctor's suggestions on treatment. Others are seeking confirmation of decision choices, or are seeking opinions based on the experience of others regarding side effects and recovery from treatment courses.

I do think that if asked, most of the medical "experts" would address their patients questions. Given the dynamics in one-on-one situations with our doctors, however, I suspect that many patients either forget their questions until after their appointment or something that was said in their meeting prompts a follow-on question they only thought of later.

In any event, I'm grateful to the sponsors of these forums as I believe that they are a great resource for those seeking information, support, and sympathy.

K

hopeful and opt...
Posts: 1278
Joined: Apr 2009

Since the American Cancer Society sponsors this forum, and provides many other resources for cancer patients, this is a great charity to support............one way to show support is to help organize and/or attend a " Relay For Life" fund raiser; held in numerous locations...........I attended my second one this past summer..........the event is very inspiring and worth attending.

Beau2
Posts: 228
Joined: Sep 2010

Besides serving as a question and answer forum, the site also serves as a "social" forum.

I have not added up the numbers; however, I would hazard a guess that 80% of the posts are made by 20% of the posters. Some guys just like to participate (read and/or write)in the forum.

Swingshiftworker
Posts: 616
Joined: Mar 2010

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's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

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

mrspjd
Posts: 688
Joined: Apr 2010

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

silverfox1
Posts: 36
Joined: Dec 2010

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.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

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

K

ProfWagstaff's picture
ProfWagstaff
Posts: 98
Joined: Jun 2010

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.

mrspjd
Posts: 688
Joined: Apr 2010

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

ProfWagstaff's picture
ProfWagstaff
Posts: 98
Joined: Jun 2010

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
Posts: 688
Joined: Apr 2010

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's picture
Kongo
Posts: 1167
Joined: Mar 2010

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
Posts: 688
Joined: Apr 2010

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.

Mark58
Posts: 29
Joined: Jun 2004

I agree with Kongo, if I understood him correctly. I absolutely will not participate in a clinical trial if there is a chance of getting a placebo. I could never understand exactly what research data could possibly be gotten from a man taking a placebo. That same data could be gotten from any non-participant. This has always bothered me. Is this the drug company or the FDA? How does everyone else feel about this?

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Mark, the FDA will not approve a drug for use unless it has gone through a randomized Phase III trial.

K

Mark58
Posts: 29
Joined: Jun 2004

I understand that, but I still don't agree with the science behind it.

ProfWagstaff's picture
ProfWagstaff
Posts: 98
Joined: Jun 2010

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

Will_10_2010
Posts: 43
Joined: Nov 2010

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
Posts: 14
Joined: Nov 2010

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.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

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

kddh
Posts: 14
Joined: Nov 2010

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
Posts: 616
Joined: Mar 2010

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
Posts: 14
Joined: Nov 2010

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!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Hey, kddh

Between the various forms of common radiation today such as brachytherapy, HDR brachy, IMRT (including several types of delivery), SBRT, or proton therapy most near term adverse side effects involving urinary, rectal, and potency issues are are all fairly low although there are statistical differences between them, depending upon which study you choose to read/believe. For example, brachytherapy generally has a higher degree of urinary and rectal issues than either SBRT or IMRT. In my opinion, this mostly has to do with seed placement, potential migration of the seeds where they might bump up against the colon or urethra and so forth. In any event it's most likely a moot point as all of the studies show that the level of urinary or rectal toxicities are in the 4-6% range. There is a potential for longer term potency issues with any form of radiation although most treatments show greater than 80% full function at the five year point and if there are issues, they are fairly easily addressed with drugs like Viagra.

The biggest thing about side effects, in my opinion, is what your pre-existing condition. If you have urinary issues before treatment (whatever treatment that might be) you're probably going to have issues after treatment. Depending on the size of your prostate, seeds may or may not pose a problem...I just don't know that much about the feasibility of seeds relative to prostate size and if it becomes harder to do with a large prostate or not. It's not really an issue with CK or IMRT as they just take that into account in developing the radiation plan.

I don't think that seeds would set of a magnatometer at the airport whether they use iodine or palladium isotopes. If the airport had a radiation alarm you might make the needle flutter for the first few months or so but I flew about 250,000 miles last year and don't recall ever seeing a radiation monitor (or course it might have been hidden). The backscatter devices only go to the skin level and would never detect anything in your prostate.

I think you're being quite savvy to investigate seeds as well as Cyberknife. You may want to look at IMRT as well. There are pros and cons with each of the treatments.

Despite your weight, you have many options to treat your prostate cancer and I'm sure by now that you've learned that a higher BMI significantly increases the risk of prostate and other cancers, not to mention heart disease. For me, my cancer diagnosis was a lifestyle wakeup call and while I'm still refining my thoughts on this issue, I am moving toward a diet that I believe is reducing the risk of feeding my cancer. I hope you take this opportunity to re-examine your diet and exercise regimin too because it can have a significant impact on preventing recurring cancer after treatment.

Insurance is a whole other issue. I hear what you say when you say that the "price is right" but I would also add..."you get what you pay for." I'm always somewhat amused (and sometimes saddened) when I hear of people being turned down for procedures and they say "I've always paid my premiums..." I think as we age we have to be particularly judicious in reading the fine print in our insurance policies to understand what is covered and what is not covered. Too often, people pick the least expensive choice not realizing what they are signing up for and what choices they may unwittingly be foregoing. In any event, I do hope you find a treatment that you're comfortable with and is also covered by one of your policies.

Best,

K

ob66
Posts: 214
Joined: Apr 2010

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

CharlieG's picture
CharlieG
Posts: 67
Joined: Mar 2010

I have been thinking the same things, Bob. My hat is off to the Kongomeister...

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