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Posted 1/26/2012 10:15 PM (GMT 0)
I only found this forum a couple of months ago but I go to it several times a week now because it provides me with more USEFUL information than any other site or book that I have found since I was diagnosed with prostate cancer. It's a valuable learning tool and the members all seem, to me, to be genuine and caring people...we are all truly part of a "brotherhood"...when it comes to any individual's post, just take from it what you need...and leave the rest. Continued successful recovery to all !
Posted 1/26/2012 10:43 PM (GMT 0)
ice cat,

that's what the true spirit of HW is all about, in our case in the PC community, it is about the brotherhood (and sisters) that make up this group.

david
Posted 1/26/2012 11:06 PM (GMT 0)

Gettin' tired of pattin' you on the back Sonny .. but that reply demonstrated the eloquence of an apostle and the focus of a Navy Seal.

Let's not dumb down this invaluable resource.  Healingwell.com vs placebo kicks butt.

Jim

Posted 1/27/2012 12:25 AM (GMT 0)
Sonny, you are now my main man (outside of John, naturally!). What an amazing post, and coming from someone who is dealing with so much right now. You nailed it but good.

As to the general observation made by SHU, I can only say that I have definitely found that some members are just contrary ... they add value but always with a bit of a twist.

It's sad that some simply cannot let a thread live out its natural life but feel compelled to push it in a different direction.
Posted 1/27/2012 8:34 PM (GMT 0)
I agree that this forum is different than it was when I joined over three years ago.  However, I personally believe it has changed for the better.  When I joined it frankly seemed more like a closed society of surgery only patients.  There was much confirmation of their pre-conceived choice and little patience for those who considered other options, e.g. ("TFT...are you crazy?"). 

Today's forum has a wide diversity of patients who have made different treatment choices, members with strong opinions, a deep knowledge base, extensive listing of resources and yet still a caring and welcoming attitude for newcomers.  There remains an outpouring of support for veterans who have extended troubles be they PCa related or not.

A newcomed today can tap a knowledge base of patients who have had robotic and open surgery, HDR and LDR Brachytherapy, all kinds of external radiation both pre and post procedure, HIFU, TFT, Cyrosurgery and are practicing AS.  We have members who have heavily researched diet and nutrition, color doppler, MRIS and numerous other tests.  The reason, IMHO, that many folks feel this is the best PCa site on the web is not just that one can receive support here but also one can receive knowledge.

Yeah, we have our fair share of debates and cranky old men and I admit to being guilty of being one of the latter from time to time.  But...the "good old days" of HW...you can keep them.  I think the "good new days" are a vast improvement.

Just my take,

Tudpock (Jim)

Posted 1/27/2012 8:57 PM (GMT 0)
Jim, I think you paint a very accurate picture of HW today. It is not quite 3 years for me and I see exactly what you are saying about the depth and breadth of the knowledge and discussions.

I do feel that there seems to be a lot more "in your face" type postings than there were when I found HW. IMHO that is somewhat a distraction of what HW is and can be.

I have seen you involved in some very deep differences of opinion (as you stated) but, I have never seen you cross that line from healthy discussion to rudeness.

You have brought a ton of great info to this site and the discussions. Yet you have always brought it in a very civil and and caring tone.

Thanks for being here and for all that I have learned from you.

Sonny
Posted 1/27/2012 11:46 PM (GMT 0)
tud,

you have been a keeper as long as i have known you. i always think you are fair and balanced, something that is not
always easy to accomplish.

david
Posted 1/28/2012 8:32 AM (GMT 0)
As the wife and a member, I am grateful that this site exists at all.

Mostly because it makes the disease less cruel and more human. If it wasn't for this site I would have still worked me way through reams of research whether through the net or through the library. What I would have missed out on would be the ability to ask other people who were and are going through what we are going through what they thought. Listening and interacting with other people's stories is very powerful.

Maybe in the past there were face to face support groups, as there are now. But I know how uncomfortable I would have been as a 38 year old female at the time attending a support group with men a generation older in many instances - talking about issues such as impotence and incontinence would have been impossible. It is only a forum like this that could possibly work for couples like paul and me where paul was reluctant at the beginning to find out more and I was very keen to.

There are many types of support, one is the warm and fuzzy support of people feeling for you. Then there is the type of support where people point you in the right direction. Then the type of support where people who have done years of legwork share their knowledge with you. And for me personally some of the best support comes from the knowledge I gain when people have different points of view and disagree. There is nothing wrong with disagreement as long as it doesn't get personal (thank you moderators) because even the doctors don't agree. As my dad said to me once, part of being grown up is about realizing that different points of view on the same issue is absolutely fine and needs to be encouraged. This is what I loved for example about David posting his doctors views on starting HT.

I don't know what this forum was like a few years ago. If the focus was basically the warm and fuzzy then my view is that this forum has improved because I see the full spectrum of support here and that is what makes it such a great place to visit.

Regards,
An

Post Edited (An38) : 1/28/2012 1:36:52 AM (GMT-7)

Posted 1/28/2012 8:58 AM (GMT 0)
An38,

I agree with you 100 %. I will add; Vive la difference! Sometimes I feel the posts have a bit of personal bias, but I love the cluncky anarchy and community here. I feel myself getting a bit agitated and uncomfortable with some of the opinions, but I remind myself that, for the better, this is a community of personal experiences.

Thanks to the moderators for keeping some level of sanity!

-Winter
Posted 1/28/2012 6:19 PM (GMT 0)
Three years ago when I first joined this forum I found it full of support, but mainly for surgery guys and for managing post surgery issues. There were only two BT members posting, Tud and Just Julie. Active Survellience and targeted focal therapy were dismissed as any type of valid options and those advocating these positions were not welcome. There was only the basic understanding of diagonistics and staging and no discussions of advanced diagonostics such as MRIS, Combidex, or color doppler or even psa kenetics. Bone and CT scans were recommended for even the lowest risk cases. If you wanted to learn about surgery and its issues then this was the place to be. If you wanted emotional support, this was the place to be, but the knowledge shared was narrow, superficial and highly biased. Other sites such as YANA and ProstatePointers provided much more useful information for patients seeking other options and looking for a more in depth understanding of the disease they were facing.
This thread shows the difference in what people need and expect from this forum. Some need support and some need more information and your needs will govern how you see this forum.
Today I think the forum is much more balanced; providing support to those who need it and also good balanced information for those that seek it. Some patients use it as a social network and some to disseminate new information or new ideas that would never be discovered by a patient searching the web alone. It is a place to vent those new ideas and subject them to discussion to other knowledgable patients. Both are valid needs and both serve patients well. Now the forum is self policing, new ideas are readily discussed and acceptance of some concepts that would have been brushed aside three years ago showed that tolerance has changed. Patients seeking support can get it in spades and those seeking information can also get different points of view and good references in which to find out more information.
Only good can come from arguing different positions as long as personal issues are left out of the discussions, and the amount of posts that get out of hand are few and far between. There are alway those that will take it personally when their ideas or view of the world are challanged, but challanging old ideas and presenting new ones will benefit everyone. In this way the forum has evolved from supporting a small group of surgical patients with limited focus and a common mindset to a much broader group of patients and the free flow of ideas and options. This in no way has diminished the support for patients needing emotional support. The forum and its patients are now much broader and more educated in all facets of PC and much more accepting of other options. This is a change for the better and one can get still get his emotional needs met, but not at the expense of limiting information for those that seek it.
JohnT
Posted 1/28/2012 7:18 PM (GMT 0)
I found this forum 6 weeks after my surgery while researching Trimix injections for my post surgery ED, so I am relatively new to this forum.  I often wish I had found it before I made decisions for the treatment of my PC as all I had at my disposal was Dr Walsh's book, my URO and research online about Davinci surgery. The day I joined HW was also the first conversation I had with any other person who also had PC.

Would I have made a different treatment decision had a joined HW at the time of my DX? I can not honestly say if I would have because i still believe I made the right decision as it was the decision I made and will live with. This thought was told to me the first day I joined HW and  that this is the underlying creed of this forum which some of us forget from time to time.

This thread has been one of the more interesting ones in a while with a lot of great posts that are neither right or wrong but the thoughts and perceptions of a lot of great guys (and Gals) who all share one common interest, we are all bothers and sisters in the same brotherhood.

Terry

Posted 1/28/2012 8:36 PM (GMT 0)
I think the responses validate the opinion that this HW forum is extremely valuable and, in fact, better than ever.

There is increased discussion of a variety of issues and current/future treatments. There is discussion on diets, supplements, and exercise.

So, once in a while, we have some spats that seem to get personal BIG DEAL! As John points out, we are a self-policing group and I might add that when we are not then the moderators do their jobs. Frankly, this adds spice to the discussions and I think we all have the sense (well... most of us...almost all the time) to back off when things become heated.

There is an underlying fellowship and respect. We all realize that with this disease and some of the tx., many of us are on an emotional roller coaster. At times it is clear that someone might be having a bad day. Unfortunately, that comes with the territory but the members here are quick to pick up and offer support and give us some slack.

I know I have a strong affinity for my fellow PC victims on this BB.

(And I suspect someone will pick out the word "victim" and argue about that!)

Mel

Posted 1/28/2012 9:27 PM (GMT 0)
A very interesting thread this is;

My two cents

I found HW in July 2011, look at my first post and you may get a idea of how terrified I was. Within 24 hours there was over 20 responses! All of the showed genuine care. I knew than this would be my 'home' per say - A place to come and get information from guys who had walked the walk and from gals who had walked with their guys.

Jim (Oncas) posted the below some time ago, to me it is what our family on Healing Well is all about.
----------------
It's an ugly disease that has brought us all together. At first blush it would seem that this disease is our only common denominator.
Truth be told .. it is not.
Compassion, and the desire to assist with each other's struggles is the real adhesive in this room. There is a limitless reserve of experience, intellect and sympathy within this brotherhood. Never hesitate to draw from the well.
Stay the course brother .. we will carry you if you fall.
-------------------

Anything else I could say as already been said.

Bud
Posted 1/29/2012 3:53 AM (GMT 0)
I was just reading an old thread from 2006 or 2007 that popped up and was subsequently locked. It's a good view of what this forum was about back then, a G6 < 5% or very low risk PC. If this person posted today the majority of advice would be quite different than it was back then. This shows how both treatments and the advice given on this forum have changed for the better.
Posted 1/29/2012 12:44 PM (GMT 0)

I’ve been a forum junkie for YEARS. I currently moderate 17 out of the 19 sites I visit every day. (counting HW)

If you had asked me a few years back about what I thought it would be like to moderate a site full of OLD GUYS with cancer I would have said it should be a piece of cake.

Considering why we’re all here, one would think there would never be any sort of arguments. Maybe the next time we have a thread that goes south – after it’s locked we can start a new discussion and talk about how to AVOID it from happening again.

Food(s) for thought:

If you’ve expressed your un-popular opinion on some subject 173 times – STOP doing that for at least a year or two. We know how you feel and would like you to take a break. (threads on supplements comes to mind)

You should always try real hard to reply to the ORIGINAL Poster’s question or concerns and NOT someone else’s reply.

If someone rubs you the wrong way – DO NOT FIRE BACK in that thread. Contact them via email or contact one of the moderators.

If and when you FIRE BACK at someone via email – type out your thoughts – re-read what you’ve typed several times over a period of a couple of hours... Re-read what they wrote etc... There’s been more then one time when I’ve done this and then realized I took what they wrote the Wrong way... Had I fired back, I would have embarrassed myself and or caused trouble where no trouble really existed.

Two wrongs don’t make a right. (thanks mom) Firing back a nasty  comment due to someone else doing it first will get YOU in trouble too. This is especially true if you’re reading this now because you’ve been warned turn

Luckily, the ugly flare ups are few and far in-between. But, when you’ve seen as many as I have, you can’t help but want to get rid of the people involved. So please keep in mind that no ones membership here is permanent nono

Posted 1/29/2012 1:22 PM (GMT 0)
Funny how positions may change, ideas may blurr or get into finer focus over time. This is an on going learning experience and that includes alot of docs (or should), the disease is full of exceptions, anomolies, discrepancies, inconsistencies, unknowns, undefined, under defined, lousy scannings, less than perfection in even our cherished scientific biopsies and pathologists whom render opinion(s), not like the buggers are found with flags/tags on them 'here I am yep Gleason 9 and oh yeah variant type that the other guy would have missed'. Then add highly biased opinions and sometimes sales tactics or pressure to corrale a patient....don't let 'em get away or mention second opinions are worth doing!!!

You wonder why we have some disagreements? Those are a starter and then we come at this with many different levels of disease affliction and one size does not fit all is an understatement. Many roads lead to Rome in fighting PCa, there are some patients whom have done unconventional looking protocols and have results that should be noted and acknowledged....instead supposedly mainstream and the norms in cancer treatments are supposedly your only choices (seemingly). I maintain my mantra of look at everything, question everything, and get envolved in what is being told to you as 'expert' advice. Notice many brand name experts even disagree.....this is your sign (blue collar comedy  line-lol).

Do not be afraid to fire a doc or find other opinions or options.....it is your battle and nobody else's to fight it out. Coming up on year 10 real soon now, seen alot of forums and discussions on this stuff and confirms alot of this thinking. Hail to the fighters whom have to look at some lousy choices or circumstances and bravely go where they have never gone before. cool

Post Edited (zufus) : 1/29/2012 6:27:18 AM (GMT-7)

Posted 1/29/2012 2:39 PM (GMT 0)
Simply stated, great site….I come here for; 1.          Technical and scientific knowledge   And as related to the statement that “none of us are experts”... I only ask how in the world can I set in a room full of physicians and understand everything said about prostate cancer?(I'm not a physician)   Answer…It is because we do have experts by my definition and I have learned from them. Perhaps I’m different, but without them ( my perceived experts ) I’d probably not utilize this site as much.   It is the differentiating characteristic for me.    Oh, I also like the occasional url posted on youtube with one of our members singing and playing that 12 string. (an expert) Hero
Posted 1/29/2012 2:46 PM (GMT 0)
I loved Steve n Dallas's term "forum junkie". 

Over the past three years HW, and another forum, have become my opiates of choice .... just have to have my fix each morning.  Even if I'm in the field on a job I've got to log in and see how the guys are doing.  I'm in the Phoenix area for a month and found out the house I rented didn't have internet service .... no HW! ... I panicked and got internet set up.

Maybe HW serves my social needs, I don't know. 

I do know that I have learned a lot and no matter where my disease leads I have a source for answers.  Added to this, I really feel good when I can contribute something that I think someone else can use.

I don't really care if the forum has changed, I still need my morning hit.  Thanks for providing it.

Posted 1/29/2012 3:04 PM (GMT 0)
I guess by Steve's definition I am also a forum junkie.  The ONLY good thing that has come from my PC journey has been finding this forum.

Why was it a good thing? 

I have now made many great new friends that will last a lifetime. I got invited by several of these new friends to attend something called GFMPH last year in NY. I had one of the best 3 days in my life and can not wait for GFMPH this year.

This forum has been my addiction for the last 7 months but it is a healthy addiction for which I will never need to attend rehab.

Because of my involvement I have helped and mentored several of my PC brothers which has also helped me realize that for every setback in life a positive will come forward.

A forum like this will always take on the personality of its contributors which means it will be in a continual metamorphosis as those contributors come and go. This is all good and healthy for the success of all going forward.

Terry

Posted 1/29/2012 5:34 PM (GMT 0)
Steve:

You said:
>>>>>>>>>>>
You should always try real hard to reply to the ORIGINAL Poster’s question or concerns and NOT someone else’s reply.
>>>>>>>>>>>>>>
True, but some of the best threads have branched out into other areas. I'll leave it at that.

Also, I would reiterate that usually a FRIENDLY warning from a moderator is more than sufficient to get folks back on track when things are getting too argumentative (in fact, as stated previously, we do a good job of policing ourselves in MOST cases). An initial warning of stuff like "STOP POSTING ON THIS THREAD , YOU'VE BEEN WARNED" is totally uncalled for in many cases. The innuendos involved in the statement that none of us are here permanently is also uncalled for. Sometimes maybe the moderator needs to be a bit more...moderate.

I am aware of one situation where someone was banned and that situation was absolutely called for. But everyone I know on this BB is struggling to cope with this disease. As I said, a friendly warning should be the initial warning and that usually suffices.






Mel
Posted 1/29/2012 9:23 PM (GMT 0)
Mel - it isn't an innuendo when I mentioned none of us have a permanent spot here...It's a fact. So love thy neighbor and quit the arguing devil

Or if you'd prefer - I could use the "But I have Cancer" card when I come off a little harsh turn

Posted 1/29/2012 9:28 PM (GMT 0)
It's a fact used as a threat.

But your last sentence was very nicely done.

Mel (remember, I have cancer)

Posted 1/29/2012 9:48 PM (GMT 0)
JohnT - in reference to you well out longer answer above to this thread, not disgreeing with it all. But to keep it in perspective for those that are newer here, let's say for arguments sake, less than a year. Three years ago or so, yes, this site was mostly made up with surgery guys, without a doubt. And even 3 years ago, many were open guys, as the robotic stuff was just starting to really take off across the country. Faster in some regions, slower in others, like where I live for example. There weren't many seed radiation guys here at all, and a handlful of regular RT guys. Where I see that it wasn't a bias, as much as a reality, is because surgey has always been the number one primary treatment method for prostate cancer, very much so a few years ago.

Now at HW, in that 3 year period, you have lots of robotic guys, fewer and fewer open, ton's of seeds, and a handful of those using other methods such as cyro and proton and tft, etc. So the knowledge base is expanding, and I see people accepting more and more of these once "alternative" treatment methods. Not so alternative any more.

Change can be a good thing, if every one keeps an open mind.

david in sc
Posted 1/29/2012 10:05 PM (GMT 0)
Hard for me say who has changed more, me or the forum. I was so naive when I first came on here. still am I guess.

I do agree there have been some changes, but overall, they are not detracting from the overall mission of HW.

I think all of us would do the site a favor by asking ourselves before we hit the submit key if what we are saying is kind and compassionate, and won't be perceived as telling someone they are stupid, or misinformed.

I have deleted many posts when I felt that it would cause a guy fighting for his life to react negatively. ( even tho I know Pom is the right thing to do ). (just kidding)

I have tried to use e-mail if I want to be more direct, so it doesn't appear as an insult to the person.

This is still the greatest site out there. As Sonny and others have mentioned, as a huge bonus, I have made some lifelong friends, who I can't wait to rub shoulders with in April.

Goodlife
Posted 1/29/2012 11:00 PM (GMT 0)
Does anyone ever go into the actually chat rooms?
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