Let's Discuss Opinions and Advice on ... - Advanced Prostate...

Advanced Prostate Cancer

17,215 members21,128 posts

Let's Discuss Opinions and Advice on this Great Forum of Ours.

Moespy profile image
33 Replies

I see there are many debates and contentious back and forth on why information is being prescribed and questioning of credentials and qualifications. I thought to myself, wow as if this disease isn't bad enough now we are going to stress ourselves out with this. I think that some here don't like others not agreeing with their thoughts and many think that theses disagreements could be delivered in a softer fashion. There are those here that are out to protect the vulnerable by making sure disclaimers are attached to the information provided. All good stuff but how do we accomplish this without attacking each other. I don't have the answer hence this post.

Here is my experience with HU and how I use the forum.

I desired to learn about a supplement regimen and I found fantastic advice and opinions from Nalakrats and others. Thank you!

I needed direction and advice for the next steps in my medical treatment and I received all I could handle from Tall_Allen and others. Thank you!

I try to take the information given in a clinical fashion and not in an emotional one. Easier said than done when facing death but one that is important if I am actually going to receive what I seek. If I get a harsh response or an arrogant one I take the emotion out read the information provided and I move on to the most critical step.... I research what has been given to me here and I make up my own mind as to how I proceed. What I don't do is argue with the person providing me this information. This would just make me feel worse in the end and I doubt I would gain a lot. I do however ask respectful questions and I get amazing answers!

I treat the research of PCa and it's treatment as a job and try to act professionally here as I would in the workplace.

This forum has been and will continue to be the basis for my list of questions for my MO & RO. I also take my doctors advice and opinions and throw them out here for feedback. It's great!

That's my story, anyone out there disagree? LOL!

Jim

33 Replies
Ahk1 profile image
Ahk1

I couldn’t say it any better, Jim. this is exactly how I look at it and try to follow the way you describe it. It’s NOT about who is right and who is wrong. It’s ONLY about making sense of the information being given to us at the moment we receive it, NOT after a 10 years from now when things had changed. Let’s help each other.

Lyubov profile image
Lyubov

Well stated! Everyone here will benefit by trying to follow your example.

But . . . two points:

1. I see similar disintegration of "discussion" & "sharing" into "ad hominem" attacks & taking remarks too personally on other on-line groups; and

2. I remind myself that some/many of those posting are suffering side-effects of various treatments, especially ADT & depression, & may get overly emotional in response to comments.

So, I fully agree with you, Moespy, but can appreciate why some comments become so negative, even vitriolic.

Maybe one solution is to hold off from posting replies immediately. Take some time away & return to the comment of concern later in an attempt to post a more thoughtful, understanding reply -- or no reply at all.

Shooter1 profile image
Shooter1 in reply to Lyubov

See my reply to Nalakrats post. Keep the peace and respect others. You don't have to like them.

cujoe profile image
cujoe in reply to Shooter1

I'm guessing yours got left behind like mine when Nalakrats' post got moved to Patrick's???

Be Well - cujoe

jdm3 profile image
jdm3

Thank you for writing this.

There is a tremendous value in the collective wisdom and experience on this site. Some are prolific researchers who are willing to share their their knowledge with us. Others are pioneers of sorts who aggregate information on off-label drugs, supplements, and alternatives and are willing to share ideas and regimens. Yet others are advocates for evidence-based medicine and proven treatments. All are valued and appreciated and none are mutually exclusive.

This site is not only an incredible resource, but a refuge of sorts where I can communicate with and learn from people who have similar challenges in life. Needless to say, those who not have PCa do not fully appreciate the impact it has - not just physical, but emotional and psychological. Not just on us, but on our spouse and kids, etc...

Anyway, all that to say, I really appreciate all of you and hope we can continue to find ways to communicate effectively and respectfully without alienating or driving away people who really add value and/or would really benefit from staying involved.

Have a good weekend,

Josh

smroush profile image
smroush

Above all else, this forum is or should be a support group. We can certainly disagree with information presented but it should ALWAYS be in a respectful manner.

cesanon profile image
cesanon

I would like to be able to talk about the intersection of prostate cancer, health policy and insurance.

Without all the emotional adhominum attacks.

Harry-B profile image
Harry-B

Great advice for everybody. Thanks. Harry

Sxrxrnr1 profile image
Sxrxrnr1 in reply to Harry-B

Personally for me, I appreciate and learn from lively debate. Are we to merely to sit here and accept as factual without question the postings of those who perhaps are merely expressing their own opinions without evidence to support them, without opposing argument from those who disagree?

For me controversy and debate is an opportunity as a learning experience that should not be lightly dismissed.

I also have the choice with the flick of a finger to move on to another thread if I am offended, irritated or bored by postings where there is rancorous debate among participants that I find of little value to my interests or circumstances.

Perhaps this is why in this world of political correctness gone berserk, I just throw up my hands in despair at just how far our society has fallen as so many appear unable to tolerate opposing argument and opinion.

What would our country have become if our great leaders who formed it some 200 plus years ago, thought as we do today, as they argued sometimes violently and often offended their opponents in support of their desires and opinions!

Of course all of this is merely one man’s opinion.

michael00 profile image
michael00

I have appreciated everyone's comments on here. I started this journey with no knowledge and quite scared. The information i got from nalkarats, tall allen and all others has helped me do my own research and put me at ease in learning to deal with what to expect. Thank you to all for everything

jedgar1 profile image
jedgar1

I have only been the recipient of rather negative response to something I said once and I just don't respond and agree with Lyubov. We are all sick and on so many drugs sometimes I don't believe what I say myself. Kindness and appreciation for the the people here that dedicate their time and knowledge to us is all is more important than a perceived slight.

I already left one abusive "support" group because it was rabidly anti-surgery, and the party line was fairly strictly enforced. Is this endemic?

Moespy profile image
Moespy in reply to

I don't think so. It has been my experience on this site that there is a well balanced population with great minds on both sides of surgery and holistic treatment. Hopefully we will continue this balance as it is important to allow others to have and state their opinions. Differences in opinion should be encouraged but delivered with respect to the others viewpoint.

Darryl profile image
DarrylPartner in reply to

There is no party line here. Please see Moespy’s reply below

j-o-h-n profile image
j-o-h-n

youtube.com/watch?v=JdgWRmn...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/16/2019 12:16 PM EST

monte1111 profile image
monte1111

You are so right sir. I have had my feelings hurt a few times. But the lupron makes me very touchy. We are all here for the prostate cancer knowledge that others possess. And a little humor and entertainment along the way is just an added plus as long as I am concerned. And you guys rock! So tone it down for a little while. I will reluctantly watch Married with Children. And wait for human nature to take its course. Enjoy.

Break60 profile image
Break60

Good thoughts Jim. I too get upset when I see great guys who spend a lot of time helping others get trashed. I’ve learned a lot from them and it’s helped me in dealing with my physicians who aren’t as up to date as some of the gents here.

Another important aspect of this site is letting guys know they are not alone. This disease can be life shattering and it helps to listen to others and offer them consolation and perhaps even the benefit of their experiences.

Bob

Moespy profile image
Moespy in reply to Break60

Break60,

Well said.

Thanks for adding your thoughts.

Jim

Stegosaurus37 profile image
Stegosaurus37

We're all going through a tough patch. And for all of us some days are better than others. Cut the other guy a little slack and try to remember he's trying to help us also.

And cut yourself some slack also. When we're under the influence of side effects or some nasty therapy, it's easy to burst out with something that you'll regret later. We're all brothers here.

j-o-h-n profile image
j-o-h-n

When I see guys going at each other it reminds me of me and my first wife. I made a video of one of our hourly "disputes". I'm the one on the left, she's on the right.

youtube.com/watch?v=t-7mQhS...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/16/2019 7:54 PM EST

Moespy profile image
Moespy in reply to j-o-h-n

Hahahahahahahahahahahahahahahahahahahahahahahahahah!!!!!!!!!!

EricE profile image
EricE in reply to j-o-h-n

That was quite excellent. Thanks! LOL

j-o-h-n profile image
j-o-h-n in reply to EricE

thank you, I try...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 02/17/2019 12:49 PM EST

michael00 profile image
michael00 in reply to j-o-h-n

J-o-h-n you keep rhis place interesting

I look forward to seeing all your posts

j-o-h-n profile image
j-o-h-n in reply to michael00

Remember the old line?

Don't applaud, just throw money...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 02/17/2019 12:52 PM EST

Break60 profile image
Break60 in reply to j-o-h-n

😂😂😂😂😂😂😂😂

j-o-h-n profile image
j-o-h-n in reply to Break60

👀👀👀👀👀👀👀👀

vimeopro.com/bmffworldtour/...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 02/17/2019 1:03 PM EST

You speak the truth. I feel the same Moesby.

GoEZ profile image
GoEZ

When I was first diagnosed with cancer I was stunned by the reactions I was getting, don’t be a baby, Uncle Joe had PC and he lived till he was 90. Others would walk up to me shake my hand and say it was nice knowing you. There are so many beliefs out there it was a mind trip. I didn’t know what to believe. It wasn’t till a doctor got tired of my questions that he told me that they don’t really know what will happen. The doctor had patience who started with him who had everything (high Gleason scores, tumors everywhere and are still alive after 30 years. Others with low Gleason scores and clean scans die after a few years. Some of us don’t suffer any side effects while others get the whole list.

We are all going to the same place in the end, we are all just going our own route. Some of us get to meander while others get a fast bullet train to the end. We are all unique. Our solutions and work a rounds are for where we are in this journey. That is what I like about this site, is the wide open range of advice I can get from here. I can find someone who is traveling a close path to mine for answers. I can also find solutions from someone on another path that may work for me. Take what you can live with and set a side that advice that doesn’t suit you. Be kind to each other, you don’t really know what path that person has traveled. Today may be easy and tomorrow a living hell. Live well and Good.

Moespy profile image
Moespy in reply to GoEZ

I have often thought how great it would be if someone created an app that examined and advised a suggested PCa treatment path. You would input all of your past treatment, your current meds, vitals, current PSA and the app would then calculate and provide you an answer. Such as, when your PSA increases to X then you should do Y. Or, you should get a scan in 6 months to determine X and then do Y.

I still struggle greatly with what's next; especially with all of the new drugs here and on the horizon. Thank goodness for this forum where I can ask questions and get great answers.

I enjoyed your post.

Thank you,

Jim

j-o-h-n profile image
j-o-h-n

Heave, Ho. Yep we're all rowing in the same slave ship..... and then suddenly there's an announcement.

"There is good news and bad news for today:

The good news is that all of you slaves will receive an extra ration of grog today,

the bad news is that the captain wants to go water skiing".

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 02/17/2019 12:44 PM EST

SeosamhM profile image
SeosamhM

Hear, hear, Jim. My wife and I were in emergency medical services for 20+ years. We realized that everything is chance and statistics, including our treatments in the field. We saw "standard of care" change drastically over the course of those two decades in many ways. PCa is no different, and I hold neither my doctors nor their field wholly responsible for my care. I feel that I have many legitimate options, and that is both comforting and unnerving at once - I want to have a say in my choices, but I want to avoid negative outcomes. I have not found one individual on this site to be either definitely wrong or definitely right.... I listen to their voice and opinion, and admire those brave enough to speak and provide information.

As Mark Twain paraphrased: "There are three kinds of lies: lies, damned lies, and statistics." To think that at any point in our treatment our "case" is fully along one best-fit curve or another is just as biased as thinking that we are not. I share GoEZ's view, and yours. - Joe M.

Maleko808 profile image
Maleko808

I come here to get information ask some mild questions, and look for some hope. Occasionally I get a chuckle, or read some bad news. But overall I remind myself of what we are going through and do my own research.

Some day we will all meet and talk about our moral existence.

Then we will all turn to watch Nalakrats wrestle the gator while j-o-h-n provides color commentary and TallAllen gives us the stats. It will be glorious!

You may also like...