Helping those seeking help - Topics regularly sidetracked!

Marathon Man · Regular Joined: 17 Jan 2008 Posts: 49 Location: Ireland

There are plenty of prostate forums and related help sites. What attracted me on this particular site was the proactive approach taken by a lot of people here. Nobody appeared to have an agenda, other than to provide impartial advice to those coming to the site. Unfortunately, for the last while I think a lot of that has disappeared from the site.

IMHO, those who post here conform basically to 4 types:
1 People coming here for the first time looking for advice and reassurance.
2 People (sometimes coming here for the first time) who are looking for advice advice and reassurance, following treatment.
3 People (sometimes coming here for the first time) who are looking for advice advice and reassurance, following recurrence of their cancer.
4 Those of us who, based on our own experiences, try to respond in an appropriate fashion, to those in the three other categories.

There is a fifth grouping that we don't hear from: the majority of people who are too despondent or scared with their fate to post either way. Those people (may) just visit the site, see the current 'bun fight' and leave - we've had OP's do that in recent months.

Personally, I'm disturbed that a significant number of posts are being taken off topic and are being promoted/advised in a way that contributes, imho, little to the OP's question/post.

An example of this is JustJB's thread - see his recent post below. I might add that this is, imho, a warning to us, in relation to the Prostate Forum, that we have been, maybe well-meant, but nevertheless diverted into an alley where all discussions lead to HIFU.

[quote="JustJB"]Since I started this thread to invite information as someone just diagnosed, I think I can pop in here with an observation or two. I've looked into HIFU. I understand that there is a desire to avoid some side-effects. I also understand that a) I am not close to any clinical trials for HIFU; and b) I am not going to put out $25,000 that I don't have for a procedure that is, in my interpretation of what I've read, not proven over a long period of time.
Personally I've ruled out HIFU as an option. I am not afraid of surgery and I believe that the side effects will be something I can deal with. I want to live a loonnnnng time, and I believe that surgery has proven to be the best way to achieve that goal for someone in my position. I can take Cialis and do kegel exercises to get over what side-effects may come my way.
Please take the HIFU discussion to it's own thread.
If anyone has any good information to offer that adds to this thread I'd appreciate it.
To those who have had or will have HIFU, I look forward to following your progress - on another thread - and wish you nothing but the best.[/quote]

WRT HIFU, I agree with JustJB - take the HIFU discussion to it's own thread.
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Marathon Man

PSA May 06, then 6 monthly; 4.3-4.9-6.8, Dx Feb 2008, PSA 9.4 @age 54 - Biopsy Gleason 4+3
RRP 22 May 2008 - Gleason 4+4, Tumour Vol 5%, T2a, N0M0, Negative Margins. Aug 08, PSA <0.01, Feb 09 <0.02, Sep 09 <0.02

http://prostaterunner.blogspot.com/ Irregularly updated & months behind!

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

AMEN!
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History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

srtimmons

amen as well. Please set up a separate Board for emerging treatments. With most experienced treatments, we know what we get and we know the odds. With experimentals, like HIFU, it is hope and prayer because we just don't have enough experience data. that's just a fact.
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Age 58
Dx 6/15/2009; PSA 7.1; 7/12 cores positive; Gleason 6 (3+3) and 7 (3+4); PNI observed. Bone Scan and CT scan negative. Robotic RP 7/20/2009

Path report 8/11/2009 - clean margins, negative lymph nodes, negative seminal vesicles, Gleason 3+4, Stage T2c; 15% of prostate involved; NoMx.

Post-RRP PSA: 9/09: .006

channelsurferdude · Regular Joined: 21 Jun 2009 Posts: 12

Marathon Man writes:
"Those people (may) just visit the site, see the current 'bun fight' and leave - we've had OP's do that in recent months.
Personally, I'm disturbed that a significant number of posts are being taken off topic and are being promoted/advised in a way that contributes, imho, little to the OP's question/post. "

True...I monitor many sites. I am one of those guys just trying to get information on the best way to treat this beast.

There seems to be a preponderance of opinions from surgery/radiation patients that sort of backhandedly put down non-invasive procedures, or as srtimmons puts it "experimentals" or "emerging treatments." "With experimentals, like HIFU, it is hope and prayer".

This is just my opinion, but comments like that turn patients like me away from forums such as this, or at least posts like these. It is much like a urologist that only will promote surgery, because that is what he does. I as a patient would like to know all my options. Only after careful research, can we then make the right choice for ourselves.

Look you guys, I am glad that you found a modality that you are happy with. That is all I am trying to do. When you say that HIFU is experimental or emerging, that is simply not true. I will not go into that discussion here...but hope and a prayer is all we really have for all modalities. You may not think that, but just because you bought a Toyota and it is a great car for you, there are other makes and models that might be better for me. It is common for us to promote the thing that we believe in.

I belong to this club not by choice, just like you. Yet I consider you all my comrades in arms against a deadly beast. I am not a HIFU patient but am glad there are people willing to talk about it.

Sure, discussions should have their own thread, but more harm comes, IMHO, when misinformation, conjecture and skewed opinions enter into the discussion.

That's just how I see it...

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

Channelsurferdude:

We (surgery / radiation patients) always mention hifu and cryo as possible options. I think it is the reverse that is not true. We just have far less solid data to offer on those options and refuse to let manufactured of inaccurate data get passed along. NO ONE should be a propaganda machine for a specific treatment.

Offer the options, state the FACTS, clearly state opinions as being opinions and allow the patient to decide.
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History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

channelsurferdude · Regular Joined: 21 Jun 2009 Posts: 12

Hi Hawk,

I agree when you say...

"Offer the options, state the FACTS, clearly state opinions as being opinions and allow the patient to decide."

That is not how it always appears here...

Again, I am not a HIFU patient but the fact is it is NOT an experimental modality...I am just reading these posts as a newbie and when a member makes that kind of a statement, if I were not inclined to do research, I might take it as fact, not opinion.

In addition, I believe we should offer all options, yet I find very little on Proton Beam Therapy.

You are correct when you say "NO ONE should be a propaganda machine for a specific treatment", but there are those that push their treatment option like surgery/radiation just as hard as anyone else on this forum.

This is just my perspective on what it looks like to me.

Keep the faith...

Putt · Regular Joined: 04 Aug 2009 Posts: 27 Location: Kansas

It seems no matter what the topic is about, sooner or later the subject of HIFU is inserted along with the often repeated statements of fact (?) that are copied and posted over and over.

If I am seeking knowledge about a subject (for instance ADT) I am looking for specific information that will increase my chances of slowing down the slow rise of my PSA.

Even if I had $25,000 and/or wished to travel to Mexico, HIFU was not my choice, nor would it ever have been. I made my choice 5 1/2 years ago, and I have not, nor ever will, regret it.

It would be very helpful to those that read these post, when finding a subject or topic of interest, that the material contained therein would remain on topic.
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PSA at Dx 105 at age 68, 4/04. ADT, RRP, 5/04. Gleason 4+5=9, Staged pT3c N0 MX, 3D rad, 40 treatments, 8/04. PSA 1/05 <0.01. ADT till 7/07. PSA 0.03 12/08, 0.07 4/09, 0.13 8/09. Will start ADT3 after PSA reaches 1.2.

JustJB · Posted: Tue Sep 01, 2009 6:29 pm Post subject: Unreal!

I am amazed. Now this thread has become a discussion of HIFU. Methinks many of you missed the point. Please re-read the OP's first post. There's a perfectly good HIFU thread available that is focused (NPI) on HIFU. This one isn't it either.
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Age 52
Gleason 3+3 = 6
Stage T1C
1 out of 12 cores involved
Left side, median lobe

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