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Posted 8/14/2017 2:06 PM (GMT 0)
I've reached out to the founder of HealingWell a couple times that this forum has a lot of issues. He hasn't responded yet, maybe he is too busy, or maybe I'm off base, but I don't think so. If no one else feels there is a problem, I'll leave Peter alone.

I frequent multiple message forums DAILY. In the past 7 years on all the health boards I visit combined, I cant recall single dispute or an "I'm leaving" thread. It happens here all the time. WHY? A lot of the people on the other forums are teenagers, they have an excuse, on a prostate forum everyone should be "adults". Its surprising that I even know of the problems since I don't come here often. I only stop by now on my way to and from the GERD forum here. But over the years I've been in email contact with several members, (more than 10). Its always lots of the same complaints. One recently said he came here scared and afraid but left frustrated and angry. This bothers me... a lot. It should bother you too. This is NO question this place helps a lot of people. But then why is there so much discourse and people leaving upset. Do we really try help all of these people or are we just here to stroke some ego's? This shouldn't be a place that drives people away.

So then why do some many leave?

In my opinion. There does exists a bit of a good ole boy network here, the mods clearly have the backs of a selected few. This is meant to be an open forum, open discussions, or is it just for the selected few. These selected few can break any of the "rules" and say anything they want. I can't, why not? The mods need a lesson in what it means to be a mod. This is no place for kids games boys. Sorry to the few good mods, but some of you are really bad, this is a fact. As a forum junkie I think I'm qualified to say.
Is this the problem? This doesn't bother me

Medical advice is dispensed DAILY, often tailored to the very specific. Any doctor on the planet will tell you this is wrong. It doesn't matter if it sounds logical, its wrong. Doctors aren't allowed to do this. Its also a rule violation. But I think there is a lot of activity here because of this, I myself like to read it, its why I used to come here. My urologist however didn't like the one suggestion I took to him from here, he actually laughed. I have a doctor neighbor next door, and a big shot doctor from Tampa General behind him, they are both on the homeowners board. I made the mistake of talking about these forums once, bad idea. They despise places like this and call them "dangerous".
Is this the problem? This doesn't bother me

Anything that isn't a drug is discouraged. Supplements, diet, whatever, threads are often locked, even ridiculed. Complementary is here to stay. Omitting this leaves out a big part big healthcare. This forum needs to enter into the current century. Why is it I can talk all day about supplements on the GERD forum but not here. Who gets to decide this? More kids games? Myself and others have given boatloads of solid research only to have it called "garbage". Not a single doctor that I go to feels this way. Heaven help you if you mention a pomegranate here(just an example). No there will never be a large study of a pomegranate, that's just way it is. Its all about $$, get over it.
This bothers me, this is why I stopped coming. I would like to come back one day.

Its a shame, good information is exchanged here. But there are problems, that don't need to be.

So are there fixable problems here, or will we just do the predicable thing and bash me for even bringing it up?
Posted 8/14/2017 4:04 PM (GMT 0)
Yes there is a problem. My boyfriend was diagnosed and treated back in 2012 by Dr. Samadi. Many on this site don't like him for various reasons, but many have not been treated by him, but I have seen many disparaging comments. I think everyone is sooo opinionated about treatment and doctors. If they don't agree with you, they will make no bones about saying so... even do far as to try to talk you out of a treatment plan you have already made a decision on. It's like politics... 2 parties... surgery and radiation and never the twain shall meet. I peruse every now and then because my boyfriend is doing great and i don't need the site much anymore, but from what it was 5 years ago, till now, I am completely disgusted at times and don't bother posting even when I think I could add some value. Inevitably you get all the counter responses. Many don't seem to respect people's choices and almost attack them for it if they don't agree. Not productive at all.
Posted 8/14/2017 4:09 PM (GMT 0)
First of all....."all the time" to me is everyday. We do not have a member everyday telling the world they are leaving. So please let's keep it in proper perspective.

To answer your question I don't find that the forum is wrong or I wouldn't have been here nearly daily for seven years. Is it perfect? Well of course not, nothing is. Does it meat the needs of many? Obviously. Can it be improved? Probably.

None of what you say is The Firum. It is all the thoughts and observation and opinions of individual members. If you want that to change then recruit people that only have one aligned viewpoint.

Frankly I cherish the diversity and that is one of the reasons I stay here.
Posted 8/14/2017 4:13 PM (GMT 0)
Tommyc your post is spot on. Seems like if you aren't one of the select few you are on the outside. I actually thought at one point I would like to meet the guys and reached out about attending one of the gatherings. As much as I felt welcomed in the beginning I now feel like Artist Mark, not worth the stress and frustration.

Will responses to my post be supportive or defensive? Will this thread be locked to censor honest opinions? Time will tell.
Posted 8/14/2017 4:16 PM (GMT 0)
I'm relatively new. I've not felt that way. I've felt this has been pretty valuable to me. Being a open forum, compared to other forums the general mood is pretty constructive - it's good to have opinions otherwise what's the need to have a discussion. We just have to take the criticism or differing advise at its face value and make an educated decision.
Just my 2 cents.
Posted 8/14/2017 4:54 PM (GMT 0)
Hesitating to reply here... which is an example of what I do think is kind of a forum culture problem.

I have a love/hate relationship with this forum myself. Sometimes I set it aside for a weekend, a week, or a month or more. But I do come back.

People come here with a wide variety of needs and expectations. Prostate cancer itself is complicated, and has a wide variety of diagnoses and treatments, many with fairly passionate supporters.

As I did, some people come here terrified, scared, uncertain, seeking support. When I came here, mine was a stage 3, G9 5+4, and Dr. Google had me shivering in fear. People here helped me refocus, provided encouragement, suggested questions for doctors, and so on. That helped. Some said things implying "either do this or find another doctor that will". That didn't help, and stressed me out. Still does.

I stay here trying to help new guys like I was, the severe cases, the ones coming in wide-eyed, hair on fire, just heard the worst and don't know what to do. Sometimes we can help them find their footing, live through those first scary days, and eventually start into a problem-solving mindset. That process is gratifying, and in a sense I feel that it's paying it forward. Many (most?) move on from there, and that's fine.

There are others who come here looking for validation of a preselected treatment course. They can feel offended when people here may question that plan, and suggest considering other possibilities. That's unfortunate, but it's human nature. We like to be validated. I have seen people's treatment choices challenged after they've had them done. That isn't helpful. Still, most here aren't being intentionally offensive, I'm sure. There are a couple of them that say things knowing they'll offend, but with positive intent. Not sure about that one. I have a few people on my blocked-users list, and that helps.

In the past, I've shared studies here since I'm endlessly curious and research things a lot. I won't do that anymore, certainly nothing in the areas of diagnosis or treatment. The self-assured forum cognoscenti can have that field, I won't play with them anymore. Any time I post such a thing I feel trepidation coming back to look at the thread, because I know someone will be throwing shade at me over it somehow.

I think much could be gained by considering the emotional impact of how something is said, as much as what is said.

Regarding the gatherings of some forum members, I really encourage it. We meet twice a year, and I have a really good time getting to know the guys. It's an instant family bond. It would be great if we could spawn more of those gatherings somehow.

Let's support one another; we are all in a tough situation and don't need anyone to make it worse!
Posted 8/14/2017 5:02 PM (GMT 0)
Graytech,

There's a gathering coming up in NY in just over a month. Email me if you'd like information. I can probably hook you up. If anyone ever went to a GFMPH gathering and didn't have a good time I haven't heard about it. I'm fairly sure it hasn't happened.

Teddydog,

Having had surgery, radiation, and hormone therapy I don't have a natural side in the treatment wars. I like to think it gives me perspective. I agree that five years ago things got a bit out of hand but lately, it's not as bad. I also agree that the forum is not as welcoming to patients of Dr. Samadi as it ought to be. Dr Samadi has chosen to make himself a public figure and, as such, is certainly fair game for critical discussion but in his role as your boyfriend's doctor he deserves respect.

All,

Feel free to email me if you feel you are being mistreated here. Often there's not much I can do about it but we can talk.
Posted 8/14/2017 5:04 PM (GMT 0)
You can't satisfy 100% of the people 100% of the time. I think the number of people and length of time members have been here speaks for itself.
I've been here 9 years, but rarely post anymore. I like the diversity of thought and information the forum provides and it has more than met my needs over the years.
I hear a lot of complaints from Tommy, but no solutions or suggestions, other than "we should all just get along"
, I have yet to find another PC forum or website that matches this one.
Posted 8/14/2017 5:09 PM (GMT 0)
A little perspective is needed here. If you look at the bottom of this screen, you will see that there is approximately 155,000 registered users on this forum. I know that a lot of those are not active, but still there are a lot of people here which means the potential for conflicts is higher.

There are going to be times when you have conflicts, disagreements, ego bruising, etc. with any forum. This forum is very good considering the amount of people here. The upside is that with all the people here you have tremendous knowledge and experience base. I appreciate those who are sharing what they learned and experienced, often over years of personal involvement with this terrible disease. The value of that far outweighs the relatively small number of conflicts. Some people need to learn how to sift through what's presented and ignore those individuals who like creating conflicts. Every forum has those.

One thing I think would help is if people present information in a neutral way, being conscious of not taking it on as their own "personal truth". That way, they don't feel obligated to promote it and defend it when the inevitable disagreements arise. You have to allow others to disagree without being offended personally and feeling the need to defend "your truth".

In my opinion, the most important thing is that we are here to learn and to figure out what's best for us individually, not to "be right". We can disagree without being disagreeable.
Posted 8/14/2017 5:16 PM (GMT 0)
No matter where you go you will find that there is a certain amount of things that do not set well with ones' way of thinking. As a discussion forum healingwell does an admirable job. However, we must keep in mind that everyone is an individual with their own opinions, problems, solutions, personality, etc. I feel I have gained enough input, information, etc. to make participation worthwhile. If I find myself in a thread I feel is somewhat lopsided I do what anyone else would do and bail out.

John T is spot on.

For what it's worth.
Mr Bill

Post Edited (mr bill) : 8/14/2017 6:12:39 PM (GMT-6)

Posted 8/14/2017 5:18 PM (GMT 0)
Is there a problem? In my opinion: no.

Is it perfect? Definitely not. But I do believe there is considerable more goodness here than otherwise. For my part, I don't believe I would be doing as well as I am (knock on wood) without the guidance I received here. I also don't think I'd have the same perspective that I now have if my PCa were to rear its head again.

Do some posts annoy me? Sure do! But that's the price of participating in an internet forum and, for my part, I'm sure glad I found this place and I can only hope I can give back as much as I have received here.
Posted 8/14/2017 5:21 PM (GMT 0)
keeping it simple ...I like he forum....makes me laugh ....raise my eyebrows ....wonder what`s the *%?* up with him or her , but very enjoyable and I feel the mods are trying to follow the format .....I`m sticking around...David
Posted 8/14/2017 5:28 PM (GMT 0)
Lets face it Cancer sucks right? I have been on a emotional roller coaster for 4 years, but I grab hold and hanging on and it levels out for me. I watch funny movies and read my Bible and I feel ok. Emotion plays a huge part of our lives along with everything else, family, kids, bills, job etc etc etc. All things we have to deal with. I take breaks from this site, just get away for a while and go smell some roses or look at a beautiful sunset. I dont watch the news anymore and a little sports. I get upset... no angry easy at others, has to be the drugs. So I have to stay a clam as possible. What I am saying is we all need to just chill out more than the average bear. I know that all advise here is meant well. If I can help someone here with a nice comment and I make them smile Iam good. We all have our own fight here, but we can support each other.
Posted 8/14/2017 5:42 PM (GMT 0)
I don't really agree with most of what the OP said, but there seems to be some truth with the characterization of a “good ole boy's” network. The rules of the forum are clearly not applied evenly to all members. I have seen rather innocuous comments from posters that were later removed by the mods. Yet, the sharp statements that appear to be personal attacks by “established” members are regularly left alone, without even a cautionary comment from the mods. A very few established members seem to be offended by challenges, and occasionally their responses border on viciousness. But again, no action by the mods. I realize that what constitutes a rule violation is subject to interpretation; nevertheless, IMHO there is a pattern of unequal enforcement. That being said, I realize that in any organization it is human nature to defer to people with whom we are familiar and who have been around for a long time and “paid their dues.” As for the Mods, I think they generally do a good job and they they usually provide thoughtful reasons for their actions. I was shocked when I found out the Mods are not paid for their efforts, and because of that, I cut them some additional slack. (Why on Earth would someone volunteer to work for free on a commercial site?)

So, like any other site, this place ain't perfect, but I think it is generally well run. Everyone here is in a bad boat and I find this site to be a good place for support and a reservoir of valuable information.
Posted 8/14/2017 5:42 PM (GMT 0)
I like this forum a lot!

There are "elite" members, and I'm not referring to one's profile status. The mods, TallAllen, Todd1963, CelebrateLife, JPenn (RIP), and many, many others.

I've been a member since late 2013, I have never found it to be a club of elites. But more a forum with several members who have vast experience and/or knowledge. I love you guys!!

Most posts I've seen that get locked clearly are violating rules. The only member I had a problem with seems to have left recently. I guess I wore him out. Sorry J., I really am.

I get way more out of this forum than I put in.
Posted 8/14/2017 5:49 PM (GMT 0)
When I came across Artists Mark's post I was curious, so I then read the threads. I came away with the conclusion he is way too sensitive, I found nothing to take offense from. I myself am a blunt Midwesterner.

As someone who chose surgery, having to have ruled radiation out, I did notice when I discovered this site, an unintentional rudeness when folks would question my surgery decision, they were pushing radiation. Some were smug about it. That doesn't make one feel very welcome, so perhaps there should be a rule that if a poster has chosen a treatment, then people should not question that decision, unless they are a newbie asking for advice. But I wouldn't leave with my feathers flustered in a huff like Artist Mark did. Geeeeze...

I wish the forum was divided into surgery & non-surgery posts. That would make my viewing quicker.

Nick
Posted 8/14/2017 5:51 PM (GMT 0)
No!!! I love this forum, Don't take yourself or your adversaries too seriously!
Hero
Posted 8/14/2017 6:03 PM (GMT 0)
Comments have been made as to the level of attention from the Mods (myself included). We are volunteers, unpaid, and sometimes absent for our own lives, jobs, family....

We invest heavily with our time, and a lot of that goes to cleaning up inevitable spam so that the place is at least presentable. Those of you who see the midnight korean porn ads appear and vanish can thank a Mod.

There is no "pre-post" scan as is used on many forums, where the post goes to a Mod, and gets allowed, edited, or denied. If someone posts something offensive, and we (the Mods) don't happen to be sitting and waiting for the next post, we may not see it until someone else emails us to advise that there is an issue.

At least in my case, unless I am at my desktop or laptop, I do not get email period, so it may be some hours before I can get back to an email report. We (the Mods) ask you to email all of us. We will get together and see what can / needs to be done.

After years of trying to micro edit, I've taken more to the lock / delete path, but that is because this site takes more and more of the useful hours in my day now, and I need to dial that "consumption" back a bit. So you may see me be a bit more harsh.

But the OP needs to keep in mind that this thread is still open.
Posted 8/14/2017 6:04 PM (GMT 0)
This forum has been invaluable to me in dealing with the early diagnosis of and subsequent deciding on treatment for prostate cancer. Over the last six months there have been a few posts that rubbed me the wrong way and if it was from the same poster, I simply blocked them. But it was never for someone being straightforward in their advice.

Is the tone very direct in some cases? Yes. But that makes this forum so great. IMO, some people need to snap out of the idea that alternative practices and supplements will heal their cancer; look at Steve Jobs how well that worked for him. But again it's only my opinion so I welcome the posts that lists the experiences of members that feel otherwise.

As with any online source, you have to filter and weigh the data supplied and use what is useful for you. And be not overly sensitive, criticism is not a personal attack. That may take. < rant off >
Posted 8/14/2017 6:07 PM (GMT 0)
Nick mentioned -

As someone who chose surgery, having to have ruled radiation out, I did notice when I discovered this site, an unintentional rudeness when folks would question my surgery decision, they were pushing radiation. Some were smug about it. That doesn't make one feel very welcome, so perhaps there should be a rule that if a poster has chosen a treatment, then people should not question that decision, unless they are a newbie asking for advice.

---

Nick, anyone who bashes a poster for his choice of treatment, especially after the fact, violates Rule 3. Let us know if you see that happen.
Posted 8/14/2017 6:22 PM (GMT 0)
I love our mods!!!

They deserve a raise - triple their pay (maybe even start paying them). They put up with a lot of nonsense and are measured and fair in their actions and responses.

Peace, love, and sunshine,
Andrew
Posted 8/14/2017 6:45 PM (GMT 0)
I love everything about this forum, including the differences of opinion. I came here over 2 years ago when my husband was first diagnosed and I was in a dark place. Reading the posts and the comments on my original post, helped me tremendously. The mods are great - agree with Andrew on that one. People on this forum are like any group of people in workplaces, schools, churches or organizations. And when there are different personalities, there will always be conflict. But this place is special and I keep coming back. Thanks to all the mods and the other posters, who with facts, knowledge, personal stories and humor, help us all with this terrible disease.

Post Edited (SueCAll) : 8/15/2017 2:49:34 AM (GMT-6)

Posted 8/14/2017 7:00 PM (GMT 0)
I love this forum. Don't get on here as often as I used to . That being said I have made personal friends with members on this forum some of them have already posted on this thread. I have been fortunate enough to have hosted a GFMPH which was mentioned earlier and had some of the guys at my house for 3 days.

I certainly do not agree with all the post and get frustrated with some but isn't that life. We do get to see so many views.

Thanks for a wonderful board.

Cajun Jeff
Posted 8/14/2017 7:02 PM (GMT 0)
To the original poster....
Your whole problem with this forum started out with folks disagreeing (politely, if I recall) with your statements about diet. Which if I recall (correct me if I am wrong, I'm too lazy to go back and search) were stated as facts.
That does not mean diet is not discussed openly. If you take the time to look, you will see a large number of threads devoted to open and useful discussions about diet and the relationship between diet and prostate cancer. Look at past posts/threads started by cashless clay, billybob, andWilderness, among others.

IMHO, as a frequent user if Internet forums, you should know that when you get a lot of people in an Internet chat room, not everyone is gonna agree with what you say OR HOW YOU SAY IT. (Caps intentional)
If you want an Internet forum with no controversy, you should find one with less than 10 people I it
Posted 8/14/2017 7:06 PM (GMT 0)
Like Redwing, I have a love hate relationship with this forum. I love it. But I'm always trying to break away from it, ONLY because it keeps cancer in the forefront of my mind, too much. I start every day reading about cancer, on this forum. Not good.

But I find nothing wrong with this forum. The mods do a fine job. The vast majority of members keep it civil, and almost everyone here is here to help or be helped in one way or another.

I can only remember one member who's ever announced he was leaving, and after reading through the posts in question, I call that, IMVHO, a result of thin skin.
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