Recently, a member posted a study & was rewarded with excessively strong criticism from another member. The person who posted has advanced PCa, and the criticism came from someone who doesn't.
This has become a familiar pattern & a massive turn-off - for those who do not post, as well as for those who do.
I regularly post links to new studies. I have been told that anyone can access PubMed - as though I shouldn't do it. I have been told that I do not understand the studies I post. That if I did, I would not post them. I should only post studies that have value. i.e. studies approved by this supreme judge of value.
The thread that has prompted this post has been cleaned up, so I can't quote from it, but here's what happened.
The study in question was published in "Cancer", the respected peer-reviewed journal of the American Cancer Society. The author might be unfamiliar to many, but a co-author was Peter Scardino, Chairman of the Department of Surgery at Memorial Sloan Kettering Cancer Center. The member who posted it did nothing wrong. Any one of us might have posted it - although I suspect that many would not risk it.
Unfortunately, the finding of the study was politically incorrect. The study was trashed & the man who posted it was trashed too.
Studies in journals often result in letters to the editor. One such response was quoted by the "expert" as proof that the study was bogus. Apparently, we must wait for peer responses & then decide whether a study is worthy of being presented here.
Scardino & the author are surgeons. The letter came from radiologists. And this is at the heart of the problem. The expert is forever pushing radiation & seems to boil over when he sees anything positive posted about surgery. The man also has a negative view of urologists.
The question is: should I or anyone else even bother to post a new study? The expert once said that he read far more studies than anyone in this group & knew how to read them - unlike the people in this group. Perhaps it's time to sit back & wait for him to post the essential studies. Life would be easier for many of us if we simply stopped posting.
-Patrick
Written by
pjoshea13
To view profiles and participate in discussions please or .
The ability to reply to this post has been turned off.
34 Replies
•
I would say I am not an expert on reading the studies and I appreciate all who post them and the following commentary from others. I need and want the diversity of opinions on this site.
Like other sites I frequent.....a Baja site and a PNW fishing site they sometimes devolve into personal attacks. I rarely go on the Baja site because it is so distracting to have posts attacked and that keeps me from some valuable information.
I hope everyone will continue to post and share their unique perspectives. It is healthy. Personal, sanctimonious slights and attacks are beneath this group....I hope!
I quite agree. I encouraged him to post more, not less. Just listing the many studies that are published every day in pubmed, adds nothing to our understanding if we are not given insight into what it means. But this means more work than simply cutting and pasting the abstract. It means providing context, and analysis of research methods. and opinions about what we should do as a consequence (if anything). If he doesn't want to do the extra work, that is his right, but he should not be critical of those who do.
I disagree, there are things published in Pub Med that I don't quite understand. But I can take those articles to my research doctor and ask about them. Keep those posts coming.
"I disagree, there are things published in Pub Med that I don't quite understand. But I can take those articles to my research doctor and ask about them. Keep those posts coming."
You mean like posting about a readily available, inexpensive Megace Patch? Isn't that like the pot calling the kettle black? I called your pharmacy and they do not make this patch...Also, called a compounding pharmacy near me and they don't do it either... You posted inaccurate information and got to walk....I got a 2 day suspension...Guess that is due to your relationship of many years with Darryl... part of the inner circle.... membership has its priveleges...
As a person with advanced prostate cancer, I value an appreciate your posts and anyone else that posts on this site. I am not one to comb through studies and I realize the time and effort that you must expend to find the things that you post and I want to thank you for that. It is up to the reader to determine if the studies or information provided is appropriate to their own situation. I urge you to continue and hope you do.
No one should ever feel inhibited from posting. No one. Ever. While I monitor our community quite often, there are times (sleep, shower, life, etc) that take me off line. The frequency of posts is super, but, that frequency coupled with competing demands on my life causes me to miss some of the drama that pops up. SO, PLEASE, if you feel attacked or disrespected or whatever...rather than counter-attack with replies...DIRECT MESSAGE ME. Just click on my name and then click, "message." Let me deal with whatever crap occur. AND SELF CONTROL. Snark has no place in our community. We're all trying to do our best here. Let's be our best and, thus, continue to make this community the best place for mutual support.
You said "The person who posted has advanced PCa, and the criticism came from someone who doesn't."
This is an important observation. Being diagnosed with terminal cancer tends to smash ones ego and sharpen the focus, separating the important from the trivial. I have noticed as a general rule, those have been through this process are less combative, less egocentric, less likely to come off as authorities.
This is not to judge anyone who has less serious disease, but rather to expain in difference in perspectives. Regardless of the seriousness of our disease, everyone has the right to post constructive, valuable information free from fear of personal attack.
We're all in this boat together so let's make an effort to be civil towards each other and value each others contributions. It's more important to learn than to "be right".
Do you think that caregivers/loved ones who don't have the terminal diagnosis should refrain from commenting? I agree the perspective is different, but I, for one, look forward to the comments from wives, sons, daughters, etc. who often make more effort to learn than the patient. The fear of death of a loved one may sometimes be more motivating than the fear of one's own death.
If you read my post, you will see that I am not putting a lesser value on the posts of those who have less life-threatening disease or caregivers, or anyone else. Everyone who has constructive, valuable information should have the opportunity to share it without being attacked.
You have made many valuable contributions to the group and many of us here appreciate that. My observation is that your blunt, in-your-face style is offensive to many here. It pushes people away. I can separate that attitude from the value of the information you provide, but others seem to have a more difficult time with that. I hope you continue to share your valuable knowledge with the group.
"You said 'The person who posted has advanced PCa, and the criticism came from someone who doesn't.'
'This is an important observation. Being diagnosed with terminal cancer tends to smash ones ego and sharpen the focus, separating the important from the trivial. I have noticed as a general rule, those have been through this process are less combative, less egocentric, less likely to come off as authorities."
The value of a post has nothing to do with the background of the poster. Do you imagine that the researchers of all the studies Patrick posts actually have prostate cancer? I am motivated by being a caregiver for both my parents who died of cancers, and did a lot of research on my own cancer. But that is my motivation, and is really none of your or anyone else's business. I refrain from ad hominem attacks, you should too. We all want civil discussion, and making inflammatory remarks like "your blunt, in-your-face style is offensive to many here. It pushes people away" has no place in such discussion. If you yourself (no one speaks for others here) are offended by something I write - simply PM me or Darryl. That way public discussions remain civil and on-topic.
Again, if you read my post you will see that I didn't say the value of the post was different, I said the attitude of the poster is what varies. And it's not a hard fast rule, I just see that people who facing death tend to be less combative, aggressive and ego driven. That's my personal observation and I accept that others may disagree.
Please take a breath. We appreciate what you offer and we appreciate what others offer. Most of us are capable of making our own decisions.
I read gregg57's post as very thoughtful and balanced, without any pointed attacks at anybody.
We have a potentially lethal disease. It affects everything about our lives and our loved ones. I implore you to keep posting because your contributions are valuable and appreciated, but please don't take it personally or make it personal.
Thanks.
Folks, for me, I hate the back and forth stuff that results in some trash talking. My husband has advanced prostate cancer. He’s probably dying. Don’t know when but probably from this cancer. This group is my only resource besides the oncologist who can only soarevabout 20 minutes every 6 or 12 weeks depending on my husbands needs. I NEED THIS SITE TO BRING ME INFORMATION. You all give me insight on so many levels. I NEED YOU ALL. Please, please for the sake of the folks out here who need hope and truth, the disparaging of others for whatever the post is useless (IMO)
i agree. radiation, chemo, surgery?? all options for us. I chose surgery and was lucky enough to have a surgeon who went ahead and took out all that he could when he found no defined borders and a mess in me that the scans didn't show. RO would disagree with his decision but right for me..Left a mess in my belly acct neural and venous bundles out of prostate area were Gleason 9/10. PSA climbed 10 pts after surgery but no real target for other treatment acct just a spider web though out whole belly. Chemo and ADT followed by orchiectomy and now in remission. Were all of my decisions right?? well no pain and years ahead to see.
There is not a single person on this site that holds all the correct answers treating this dreadful disease. To look down on and criticize people adding to the forum with nothing but the best intentions with credible literature is wrong. Maybe certain people have a standard in their own mind as to what is credible but that does not make it wrong. It is only in their mind and they need to understand that. We can choose to use that knowledge how we want. Posting research written by credible groups of doctors is certainly worth reading. Advances in treatment don't always start in a peer reviewed setting.
Patrick - It would be extremely unfortunate if you or anyone else stopped posting on this site out of fear of backlash. I have and continue to read your posts. Some apply to my own case and some not so much. It's my choice and anyone's that chooses to participate in this forum how they use information. You spend countless hours covering a plethora of topics and it doesn't go unnoticed to the readers. Don't ever stop aiding us in our fight.
I am now entering this discussion. I have gotten more than just tired about messages I am getting from men on this sight, that no one is suppose to see, who are complaining about the same individual. They are being scared off, in wanting to make their own comments. They tell me so! And they support me by saying---that it is a shame that, I myself, have to put up with the same individuals certain attacks. My answer is I am a big boy, and I have accomplished much in life, and I am not concerned, at age 75---->but I am concerned for my 240 followers, and others that read my Posts. and responses.
But recently my doorbell has been ringing way too much, where a 1/2 dozen, has grown to over a dozen, and more. I do not count. But you know at some point you know that something is wrong. Something is not right!!!! You do not have to be an idiot to know this.
Well after reading Patrick's Post, I support his decision if he stops and Leaves , if that is what he wants to because, of one unchained individual. I will Join with Patrick, and we are more than happy to leave the control of this site to this individual and whoever in administration, supports his antics. Some people are aware that this individual has his own Blog site, and moves people over to read and participate there. I do not agree with this action, or other actions, that are taken on behalf of this individual, pushing people towards certain treatments, that should be left to Doctors, to decide.
I am sorry to have to add my name to Patrick's, but if things do not change, Patrick, I and others will find time to discuss this with above subject with each other. And it appears we will be ready to shut down and do something else, and say goodbye, to this site. This has been coming for awhile, this is not a one off situation.
Patrick....I greatly appreciate your posts and Nalakrats on a variety of topics...the other day, I responded to George71 and my reply was gone in less than 7 minutes... some people are beyond reproach and are protected...the poster in question encouraged use of patches that don't exist....Is that leading readers astray?..The result......I got sanctioned for exposing that untruth....2 day suspension....wonder what this reply will earn me??
Take care, my man....if I disappear from posting--you know what happened.....
Let me correct this...George71 did not advise patches....some other poster did and I got sanctioned when I exposed the truth....that the patches were not readily available or inexoensive.....they did not even exist...
Patrick and Nalakrats have my respect, with just the little time Ive been here. Even when people are fighting for their lives, there is still drama🙁 and that’s shameful, especially here.
I hope Patrick and Nalakrats will continue posting, as I, and many others, look for it, need it and appreciate it. Kim
1. If you were successful in having Tall_Allen censored from this site it would be a huge disservice to all of us just as it would be if you or Patrick were censored.
2. This is an open forum that no one individual or group of individuals control.
3. If any of your followers (I am one) are afraid to post because of the responses they receive they should private message you for advice (just as I have done).
4. Threatening to leave the site because you don't like your posts challenged is probably not the best idea.
We need you, Patrick and Tall_Allen so please find a better way to solve your issues that won’t hurt us all!
Because it is MUCH more helpful and easier to read and reply if conversations are kept within one thread, not spread out among several discrete posts; especially if the posts are made within an hour or two .
You know it's hard running a forum. I used to run one. I know. I even had one moron threaten me with physical harm when I protected a young woman from his stalking.
Darryl is seems to be doing the best he can. If he made a mistake, I'm certain it wasn't intentional nor was he attempting to play favorites.
He is just attempting to encourage vigorous and healthy contribution and debate.
It's hard.
Before posting, repeat this: Knowing the truth is more important than being right.
Sherpa111 and Gregg57 have wonderfully coda'ed this conversation. Let's move back to talking about prostate cancer. As Jack Nicholson said, "I'm dying here."
I enjoy your posts. I appreciate the effort that you put into this. It saves me time from having to search pubmed. As a mom of 4 and a spouse and caregiver of someone with stage 4 Neuroendocrine Prostate Cancer, I need all the help I can get.
I am closing this thread to replies. I believe all relevant thoughts have been expressed and now people are posting ideas that other's expressed privately. That is not cool. Everyone here is encouraged to direct message me with further concerns...or you can email me directly to: darrylm at malecare.org We're here for the cancer, not the vendetta. Indeed, the only one who is here for vendetta is me, as I do this work to save my own life, and as revenge for Prostate Cancer taking my Dad's life.
The ability to reply to this post has been turned off.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Doxycycline, small clinical trial
Looks like just one bone met. Radiation or not?
What first?: Provenge or Nubeqa?
