“On a scale of 0 to 10, how likely ar... - Advanced Prostate...

Advanced Prostate Cancer

12,623 members15,302 posts

“On a scale of 0 to 10, how likely are you to recommend our advanced prostate cancer community to another man or his partner/spouse/carer?

DarrylDarrylAdministrator489 Voters

Please select one:

49 Replies

Is 10 the "yes definitely"

Valuable resource to assist with life extension

Most of us could now be MO from the collective knowledge of this site

I can’t even tell you how many abbreviations I have running through my head!

Nirman
Nirman in reply to Longterm101

Yes agreed

Cannot understand the zero votes!

Darryl
DarrylAdministrator in reply to JazzMan42

zero is included in the validated testing instrument we are using. It seems wierd but the standard for this measure includes "0"

gregg57
gregg57 in reply to JazzMan42

I don't get it either. Why would someone who votes "0" even bother to stay on the forum?

It's like the two people at the restaurant. One says "This is terrible food!" Then the other says "Yes, and such small portions!"

No zero votes. Graph can be a little confusing if you just woke up, or had too many supplements.

A lot of brain power resides here.

Can I give the likelihood a score of 1,000+? This forum has literally been a God send and lifesaver for me as I navigate my Dad’s healthcare.

Hey, Darryl...you're right to start this poll. This site is terrific, makes you realize you're not alone, not unique, not suffering as bad as you might. Several posters are so sharing that you'd think they're selling their services and want to lure us in...but no way. They're intelligent, studious, and extremely helpful warriors waging their fights alongside mine and yours.Guys like TA and Nala have a depth of knowledge that I could never have. They've taught me, encouraged me, help me get a handle on this treacherous journey.

The only reason that I gave this site a 9 instead of a 10 is because of the inane bickering (not joking, I know the difference) and the leeway that the admin gives to folks who thrive on aggravating others. But that's me, not thee.

BTW, the reason why there are NO votes for zero is because no one here would ever say that your work is worth nothing. Thanks Darryl. Thanks a bunch!

tom67inMA
tom67inMA in reply to OldFart81

I agree with the old fart 😀 But I'd also like to add that some members have left or been kicked off the site for mysterious reasons. There seems to be some enforcement of standards, but it's not very transparent to me. I've also had at least one of my posts deleted with no explanation.

Darryl
DarrylAdministrator in reply to tom67inMA

Here are our guidelines. They are always available to read under pinned posts. healthunlocked.com/advanced...

tom67inMA
tom67inMA in reply to Darryl

Thanks. My missing post had a reference to a friend that was running the Boston marathon for a prostate cancer charity, and probably also had a link to that charity. Now I know better.

Darryl
DarrylAdministrator in reply to tom67inMA

There is a ban on spamming, and charities and their allies and evangelists can overstep just as badly as non charities.

Love this site...like carrying your own personal advisors around on your phone and no appointment necessary...

while it saves effort on the keyboard, all the abbreviations can be quite confusing and cause much added trips to Wikipedia. My reason to use, if I could remember the abbreviation would be that my spelling ain't so good.

Darryl
DarrylAdministrator in reply to btca

We have an abbreviation list, that is pinned in the right hand column healthunlocked.com/advanced...

I would also vote 10 for the group dedicated to low and intermediate risk prostate cancer, if you decide to run a poll on that too.

I’m a clinical laboratory scientist and you have Accurate information, but I have to log in 5 times to read a few comments. So I don’t visit often.

Put it on your homescreen...mine stays locked in...just a thgought

ABSOLUTELY TONS of valuable information and the best forum with extremely smart people. I read it daily, just do not post because not smart enough yet still in leaning mode.

Sharing your experience can be more valuable to someone than you think!

OH YES 10+++ Thanks for all the information and support.

I don't post on here often if at all but find the weekly e-mails very informative and helpful in particular the posts from the specialists.

If there was a higher number to vote it would be deserved. Leo 2634

I have already done so, to both straight and gay men, several times

It's invaluable. There are people available (like Tall Allen to name but one) who have a vast expertise and words of comfort to help people struggling with confusing diagnoses and emotional issues.

A must and an excellent supplement to choice of therapy and proper follow up with most recent know how.... Many thanks to the community and sure to Darryl

I have no qualms in giving this site a ten. Tons of great information. Sometimes I think the advice given is from true medical personnel...and it may be for all I know!’

I have learnt so much from everyone here. I would be lost without it. Thank you.

The site is truly a life extender. Most of us would never know half of the information we use to make our medical decisions without this site. It puts us in charge of our health decisions rather than just relying an a doctor who may only see us 15 minutes every month or two. Thank you Darryl and TA and Nala and all the rest who share their vast knowledge. BTW Daryl the virtual conferences you did with all the different doctors a few months back was very informative.

Already have!! Great information.

Daft question Darryl 🤔

I've recommended it to every man and partner I know.

I don't post at this point but the knowledge I've gained from those ahead of me has been priceless

🧙‍♂️Spy_Father

Posted when I first found this site but seldom ever delete a daily posting without gleaning through it as I have elected to forgo treatment for several reasons. However, one does not know what the future holds and I hope to die with it and not from it. I am 86 and am truly amazed at the knowledge and information available here. I definitely fine TA's comments extremely helpful and succinct.

Best way to see what is new and how others are coping.

I would have rated it higher if I did not have other support groups to recommend that meet up live every month. Also slightly hesitant whenever I see group members act as if they are MDs, and/or not appreciating that no two cases are the same.

This forum is fortunate to include pragmatic, knowledgeable and helpful patient advocates. Thank you!

We are learning a lot from this group. My husband has aggressive prostate cancer with a gleason score of 4+5

The reason I won’t recommend this site

allows ad hoc and kitchen sink remedies to be presented on the site, which causes some to delay or not commence scientifically approved treatments, and/or to take alternative non-proven treatments, this net sum being potentially very dangerous and harmful to those with this deadly disease

Sadly, the excellent work that some are doing on this site is diminished by the above, sorry Darryl, this has gone on for far too long!

MarkBC
MarkBC in reply to billyboy3

I'm not bothered by all of that. There are enough knowledgeable people here who quickly debunk these unproven theories with science. I would rather have the debate initiated by those postings than have the censorship of administrators determining what we can see. Administrators should only filter out spam and abusive comments.

Darryl
DarrylAdministrator in reply to MarkBC

Indeed

gregg57
gregg57 in reply to billyboy3

I agree with your comments although I still recommend this site. There is lots of good information here.

I have complained many times about the attention-getters trolling the forum with rediculous claims and debunked myths not backed by any science. Some people just try to provoke those of us that follow science into fruitless arguments.

There is also a lot of self-promotion going on with people coming up with their own versions of alternatives to treatment.

But I guess we just have to learn to ignore this rather than feed into it. There's plenty of useful information here, well worth being a member.

1000%!!!!

Please allow me to follow up on my previous response. The labyrinth of misinformation regarding advanced prostate cancer is overwhelming. I’m a physician with 3 decades of experience. This forum is not full of misinformation. The folks that contribute are genuine and sincere. I appreciate their advice.

Good question. In my support group, men have tended to self-select in or out depending on whether or not they have advanced PCa and what I might call information saturation. Many of the good men and women on this forum appear to eat/drink/sleep/dream PCa. That can be overwhelming to the initiate. Also the issues for the G6 man are not those of the G8 or 9. I do not happen to have advanced PCa but I tune into the forum to keep myself informed. And, I will confess, at times I have empathy fatigue and have to back off a bit.

No doubt this community helped me more than anything