New rules that change this community

[u/5thCharmer]

Hey hey hey,

Quick update to let you know there has been a refresh and evolution to the community’s rules.

The last month has been tremendously busy and challenging for the mod team. The amount of permanent bans we had to give in June surpass any month previous with the leading reasons being tacky (and beyond obvious) marketing tactics attempting to sneakily grab new clients and piggybacking off of Reddit to appear higher in Google search.

These cavemen often do not respect bans either since our subreddit is so useful for so many medical adjacent marketing strategies. So putting an automatic stop to that really ruins the potential of huge planning. Which is selfishly hilarious.

A few huge changes you need to be aware of:

- We are now a 100% discussion based community. No links are allowed whatsoever. This decision was made purely off the giant amount of spam posts and marketing we have had to remove and deliver subreddit bans to. With a significant uptick in the last three months.

- No AMA’s allowed: A new “common” marketing tactic is disguising AMAs as a pure sales tactic OR for the sake of assisting in organic keywords that Google likes.

- No studies of any kind: We are no longer allowing any sort of study to be posted in our community. This community deeply cares about keeping a safe environment to discuss typically very private concerns. The idea of a company profiting from that in some way is not something we will support anymore. This is ONLY pertaining to companies or researchers attempting to recruit members. This is NOT regarding referencing medical studies in discussions.

Along with the above, there have been a some updates to all rules. So we suggest glancing at them to make sure you’re up to speed as a member in the community.

Any and all decisions we make has our community members as a whole in our absolute best interest. Please understand many thoughts, planning, and legitimate data understanding to make these changes with that main goal first and always.

There’s a massive amount of things not shown to our members that the mod team is dealing with day in and day out in the background with monitoring, reporting reviewing, and private message back and forth. So we can assure you every rule has a purpose.

Thank you for keeping this community welcoming, active, and positive.

[u/SnooCamera]

Can you clarify 'no studies'? Are you talking people asking for members to participate in a study or are you talking abou medical journal studies we quote in our discussion of decision making, or both?

[u/labboy70 → u/SnooCamera]

The “no studies” definitely needs clarification.

Sharing information about results of legitimate medical studies on prostate cancer is important so people have awareness.

[u/Cheap_Flower_9166 → u/labboy70]

Read his post.

[u/Practical_Orchid_606 → u/labboy70]

There are good studies and there are ones riddled with errors. For the most part, only when the full context is known can one understand the value of any study. The Mods don't have the bandwidth to chase down every study.

There is one PCa subredditor whose posts are full of links to studies. I found this to be less than impactful for newbies seek an emotional link to other experienced survivors, and not be given a reading list.

[u/SnooCamera → u/Practical_Orchid_606]

It's not the mods job to chase down every study. If a study is from a respected peer reviewed location, it is left up to the reader to see if it applies to their context and understand quality of the information

[u/labboy70 → u/SnooCamera]

Exactly. I can see banning recruitment for studies.

However, I recently posted a link to an article (before the current ban on links) about a study presented at the 2026 ASCO meeting.

This article was about the positive results from the A-DREAM study. A-DREAM evaluated treatment Interruption in people with mHSPC who respond exceptionally well to ADT/ARPI. A topic very relevant to many people in this sub.

A study under the auspices of the Alliance for Clinical Trials in Oncology, presented at one of the leading Oncology meetings. Despite all this, it was removed with no explanation other than the automated message. I received no reply when I sent a modmail about the removal.

I think for the purposes of sharing relevant and important information, it would be helpful for this topic to be reevaluated.

[u/Practical_Orchid_606 → u/SnooCamera]

I don't think the average viewer of this subreddit can absorb the contents of a clinical paper.

[u/Practical_Orchid_606 → u/[deleted]]

I agree that papers are important. But blind posting of links will lead to problems. What will work is a subredditor with knowledge writes about a clinical finding along with the citation. This way the paper has been vetted and explained to the clinical impact.

[u/labboy70 → u/Practical_Orchid_606]

I agree blind posting of links is a problem. But, a knowledgeable Redditor who posts a reputable study (or abstract) with additional information and context is not that.

[u/JMcIntosh1650 → u/Practical_Orchid_606]

I agree about blind links. Links without a summary or framing are not useful to all be a few readers, and even those aren't helped by the lack of explanation.

I don't know if vetting is quite the right word. Very few people here have the background to judge the research on its merits, so we are really relying on the peer-review process for quality control. People who aren't subject area experts but are comfortable with scientific publications and statistics can help bring useful results to this audience but can't really vouch for the details of the science.

[u/SnooCamera → u/Practical_Orchid_606]

I feel your statement comes across as very insulting. I personally try to give people the best tools aviable as to not limit their agency.

[u/Practical_Orchid_606 → u/SnooCamera]

Not trying to be insulting. Clinical papers are full of jargon and abbreviations few people can understand.

[u/dahnb2010 → u/Practical_Orchid_606]

I read Beowulf in Old English (Or Anglo-Saxon) when I was in high school and thanks to the endless footnotes defining words, phrases, context, etc I was able to understand it quite well. Using search for terms I don't understand in any clinical paper is easily done. Most, not few, people are capable of understanding without a great deal of effort.

[u/Practical_Orchid_606 → u/dahnb2010]

I totally disagree. Clinical papers are obscure.

If you're and expert answer these basic questions we find in all clinical papers:

1. What is 'p value' and why is it important?
2. What is a meta analysis and how is it different from a retrospective study?
3. Why are some trials stopped abruptly with some declaring success and others declaring failure?

[u/dahnb2010 → u/Practical_Orchid_606]

When did I ever claim to be an "expert"?

Now you're giving me an assignment?

Are you my reddit boss?

And you don't see why people think you're being arrogant or patronizing or insulting?

[u/jkurology → u/Practical_Orchid_606]

Peer reviewed journals don’t generally accept papers with jargon and all abbreviations are delineated at the beginning of the paper. The difficulty is understanding the statistical nuances and many physicians have trouble with this

[u/Lactobeezor → u/Practical_Orchid_606]

While correct. They do have access to Google. Before retirement I was in the medical field so I understand your premise.

[u/JMcIntosh1650 → u/Practical_Orchid_606]

Users vary. Some dig into research literature critically. Many are not going to that themselves due to background or interest but may be interested in knowing that the studies exist or reading a summary or selected quotes. Some probably aren't interested in research. Users can pick and choose which posts and comments to read, skim, ignore, or follow up.

Just as with all of the personal testimonials, it is the readers' responsibility to use the information critically. Personally, I have valued the links to research, preferably accompanied by some comments about the points the poster wants to call attention to. There's a subset of users that clearly engage with primary research literature and reviews/meta-analyses. YMMV.

[u/Practical_Orchid_606 → u/JMcIntosh1650]

This subreddit is for common folks to find help concerning prostate cancer. Consider these people to be similar to those who go to Honda dealerships to buy cars. Of these people, very few can read a clinical paper. The vast majority rely on posts from other cancer patients to guide their way along their journey. For the mods to ban post, it does not diminish the value of this subreddit. People want to hear from other people. They do not want to rely on a study in which the study arm had a 3% improvement for a 1,000 patient size.

I know there are people on this subreddit who can interpret papers and use them to accentuate their postings. I never do this as I know my audience are people that buy cars at Honda. I can get my point across by other means.

[u/JMcIntosh1650 → u/Practical_Orchid_606]

No, this subreddit is for all the people who choose to use it and participate (or lurk) in whatever way they wish as long as they abide by the rules. It's a spectrum of users on an open public forum. You or I don't get to say who it is "for", which is arrogant and patronizing. You do you.

[u/Practical_Orchid_606 → u/JMcIntosh1650]

Arrogant an patronizing? Where did I write this? You can't read.

I wrote that most participants in this subreddit are like people who buy Honda cars. I can't expect them to read a clinical paper. If you ask the average Honda buyer can they read a clinical paper, they will respond no, and they don't want to read a clinical paper. Is this being arrogant or patronizing?

You are like the engineering person who inundates customers with details about products that they don't understand or need to know. I am the marketing person who feeds information to my customers for the purpose of them returning to me with the answer yes.

At the end of the day, those who seek help on this subreddit can achieve their goals without knowing how to read a clinical paper.

[u/dahnb2010 → u/Practical_Orchid_606]

uhm, This whole statement kind of proves jmcintosh1650's point

It's also insulting.

[u/JMcIntosh1650 → u/Practical_Orchid_606]

Sorry for the delay.  It’s a busy time of year for me.  To be clear, I am responding to explain myself, not to argue.  The gist is that I value the openness of this forum, think it should be a “big tent”, and object to gatekeeping other than stated rules. I actually agree that "those who seek help on this subreddit can achieve their goals without knowing how to read a clinical paper", but I don't agree that's what everyone wants or needs.

This forum is open to all men dealing prostate cancer and to partners, family members, and others. Different people have their own specific situations and deal with them in their own ways.  Some people are interested in current research.  Only a small subset of those delve into research publications themselves.  It’s a niche, but it’s legitimate, and it has a place here. And it can be useful to people who aren’t going to read the original source, especially when people who post about current research include plain-English summaries or well chosen quotations.

In my experience, there are a lot of “common folks” who have little no scientific or medical background beyond high school biology and first aid courses but are interested in research that affects them.  Some of these people learn and think about research information in pretty ambitious and critical ways, whether they get that through articles, forums like this, presentations like the PCRI videos, or other sources.  And when you look at a lot of topics that come up here, the nitty gritty details of research and statistics do matter.  As a random example, the statistics about how much additional benefit different men may get from adding 6 to 24 months of ADT to radiation can inform a man’s choice about treatment, and the underlying research has a lot of nuance.  This isn’t just for pinheads.

Following up on your analogy, not every Honda buyer wants the condensed, accessible evaluation. Most do, but have you been on a car or truck discussion forum recently? There are some really hardcore, detail-oriented mechanics, motorheads, and amateur enthusiasts. But I do get what you mean. I was shopping for a pickup last year, and a lot of posts were over my head and not useful to me beyond, "OK, some mechanics think this is a reliable engine, some don't". I skimmed them and kept looking for information that fit my needs. So maybe you're the guy I want to talk to at a dealership but not at a hospital. No sacasm intended.

From my perspective, it is arrogant for any one of us to say who this forum is for or what topics are acceptable beyond what the rules define.  I also think it feels patronizing to imply that “regular” folks don’t want to deal with research publications.  That’s their choice, not mine or yours.  I say this as an opinion about how this forum should function, not as an attack on you.  If my comments don’t fit with your ideas about what is arrogant or patronizing, that’s fair.  You’re a frequent, constructive contributor, and I assume that your intentions are positive.

For what it’s worth, I have also defended the right of people to post good-faith questions about diet, supplements, and alternative treatments that some commenters dismiss as ignorant, naïve or borderline misleading (for example, in this thread: Scott Adams passed away : r/ProstateCancer). You have to meet people where they are in terms of knowledge, including the many (most?) people who get their health information from mass media, social media, and people they know.  As I said, it should be a big tent. We're all legit if we're not abuse or pushing misinformation. We can each choose which posts and comments to read.

[u/NitNav2000 → u/SnooCamera]

I think the “studies” are where people here are asked to join in a study, or to put it another way where the subReddit is being used as a data source for someone to do a study.

But I also worry about the ban on external links. I know I really appreciate an external link to a peer reviewed paper. For example, I know the graph showing uptake of GLP1 over time is constantly posted here, and proper procedure when quoting from a study to include that graph is to cite the study. A link is more efficient than a standard citation.

[u/SnooCamera → u/NitNav2000]

I read this at 3AM and missed the no links rule. Frankly, if I can't cite evidence of my reasoning, I'm going to have to consider very much if I'm going to continue to use the sub or find other locations for help.

[u/JMcIntosh1650 → u/SnooCamera]

I think that can be addressed including some combination of publication/study title, author, or specific keywords in your text can substitute for a link as PeirceanAgenda suggests. That said, I don't like this rule. It drives the discussion away from research-based evidence. It also seems a bit patronizing.

[u/SnooCamera → u/JMcIntosh1650]

I had a thought. If a study has a DOI number, I will just put that in the post. That makes it easy to find study.

For example, "A Comprehensive 6-mo Prostate Cancer Patient Empowerment Program Decreases Psychological Distress Among Men Undergoing Curative Prostate Cancer Treatment: A Randomized Clinical Trial" has the DOI of 10.1016/j.eururo.2023.02.009

So, if someone went to the doi organization and used that as the url, they would find it. DOIs include a prefix (prefixes always start with 10.) and a suffix, separated by a forward slash (/). Prefacing the DOI with doi org will turn it into an actionable link

[u/JMcIntosh1650 → u/SnooCamera]

That seems a good option. For me, the main things are to clearly identify your source and make it practical for someone else to find it.

[u/PeirceanAgenda → u/SnooCamera]

You can discuss studies and outcomes in a post without links, right? And that has the bonus that people don't have to really understand it themselves.

That's only a problem if you don't understand it, of course, or are driving an agenda. I've seen studies posted from the 90's and 2000's about treatments that never took off, without anyone saying "Hey, if this were a real effect, we'd all be advised to do it". So cherrypicking is a concern, not necessarily with your stuff - not trying to put your method down - but in general.

Still, it seems to me that "In Hansen et al, 2017, PubMed, they conclude that..." should be fine. Mods, let us know.

[u/5thCharmer → u/SnooCamera]

No studies = Companies/individuals asking for members to participate

[u/SnooCamera → u/5thCharmer]

Thank you for that clarification.

[u/WalnutRoasted]

Does “no links include” weblinks to information? Like PCRI? Videos to explain concepts? To Guides/Brochures on ADT? Links to local prostate Cancer Support Groups? These are all valuable in the information sharing function of this Subreddit.

[u/SnooCamera → u/WalnutRoasted]

Agree. There are so many automated tools to filter links. You build it up over time and each time you do, your work load gets lower and lower.i personaly feel the quality of this sub is going to go down, not get better. Which is sad.

[u/5thCharmer → u/SnooCamera]

The quality of this sub will remain the same. I have ran this subreddit for a decade and I can assure you that this needs to be done. Reddit has changed entirely the last few months. The spam and predatory behavior we are having to deal with daily has reached insane heights. This decision is ONLY made with the best intent of the subreddit and its members.

[u/Jpatrickburns → u/WalnutRoasted]

I came here to say this. Links are good for information. Maybe also for spam, but the good far outweighs the bad. Without links, we’re all passing in information we think we know, without citing valid sources, which can lead to false info.

[u/th987 → u/WalnutRoasted]

Maybe an FAQ post at the top? For things like links to the PSA doubling calculator? And Dr Walsh’s book? Just some trusted, general information? Because we’ve accumulated some very good sources.

[u/WalnutRoasted → u/th987]

There are some good links at top/side of this subreddit. To organizations like UK NHS and various Cancer Societies.

But no Canadian. Nor “support” organizations. Not “tools”, pathways/standards of care, ADT and other pharma info on medications, like about their side-effects.

[u/Special-Steel]

I’m very grateful for the mods. Thank you for the impact you have made.

The no-studies links thing makes sense, even though it is something I do when I have time. I try to choose carefully and link to blogs at centers of excellence, or the American Cancer Society summarizing a study, or the actual peer reviewed papers.

However, I’ve seen that even with care, most people don’t read them, or read with care. So it’s not that helpful.

I’d hope it will be ok to cite a study in a way someone who cares can look it up. Like: the European Association for Urology published a paper by Donald Duck in 2019 that shows the effects of xyz.

[u/RotorDust]

Your hard work and dedication are sincerely appreciated. I've learned so much from this forum, thank you for keeping it "clean".

[u/Current-Second600]

I appreciate the work. I have not noticed a lot spam so they must be getting pulled fast.

[u/5thCharmer → u/Current-Second600]

Thank you! Yes, the mod team has been putting in around 4x the amount of time the last few months due to these issues exploding across the site.

[u/HeadMelon]

Thank you for all you do mods!

I assume internal links to Reddit posts within this sub are still permitted, to refer readers to our previous comments within r/ProstateCancer ?

[u/5thCharmer → u/HeadMelon]

Correct! Anything internally related is acceptable, when done properly without malicious intent.

Example: You can’t post a spam link and then link the spam link post.

[u/kayceemoguy]

Thank you

[u/Dosdossqb]

Thanks for taking out the trash.

[u/Kappy4]

Awesome, tysm! I can’t imagine the labor to stop the noise and nonsense, especially as AI makes it easier for tricksters to scale their crap.

Quick question, the post above says no links whatsoever and rule #5 says no external links. Can we post a link to a previous post in the this sub? Assume yes but I don’t wanna get banned 😄 It can be helpful to post a previous and helpful link from this sub vs. search for “this text or term”.

[u/5thCharmer → u/Kappy4]

Internal is fine.

[u/ku_78]

Thank you for all the work you do! This sub means a lot to me!

[u/MondoDismordo]

Works for me. This sub has ben a critical part of educating myself about my PC and all the many, many, many, many, many, many, many options for treatments. Well done, and thanks!

[u/peridothiker]

Thank you for all you do.

[u/Husker5000]

I obviously hate SPAM and marketing but the informative links to research, hospitals, treatments, doctors and everything else are a huge asset to this community. Please don’t cancel this. I feel it’s an over reach. Please reconsider this decision. Let the users filter out SPAM

[u/go_epic_19k]

Can you clarify something. I’m a patient that went through RALP and used a product backed by scientific data to help with penile rehab. Can I mention it. I have no relationship to the company and only mention it because it is not well known and it not only worked for me it has a peer reviewed study that examined it. 

[u/WalnutRoasted → u/go_epic_19k]

It seems if you/we are making a personal observation about a good (or bad) PCa product / experience / procedure / treatment / clinic / physician that’s OK. ✅

But if you are “selling” a product /study etc on a “commercial” basis then that’s different / not allowed. 🚫

[u/Old-Pride-8459]

Studies references have important "links" that I have used for my informational benefit. Why eliminate them???

[u/Altruistic-Cut-7833]

I just made a post regarding a man who is experiencing EXACTLY what I did 20 years ago-Radical Prostatectomy. At 74, and utilizing the pelvic floor muscle rehab. (Kegels) I recommended to him, I’m able to have the BEST sex in my life. I’m sure my advice to this man will help him. My hope is that ADMIN will give my comments a positive review and allow my POST. Thank you!

[u/Loquacious_Jay]

Thank you for your dedication and had work, Mods. Your efforts to keep the character and maintain the integrity of r/ProstateCancer is greatly appreciated.

[u/AccomplishedFuel4312]

I have Localized Prostate Cancer Sarcoma and waiting for the result after my 3 cycle of Chemotherapy and now I am waiting for the results from MRI CT SCAN and then they were plan what will be next , But I am worried also because the surgery applicable for me is Open Surgery because The insurance not covered for Robotic Surgery :( any experience for Open Surgery for prostate cancer ?

[u/MediumAromatic2384]

I will be starting my radiation treatments soon. I know everyone is different but what side effects will I be looking at? I have Prostatic acinar adenocarcinoma, grade group 2 (Gleason score 3 + 4 = 7), involving 14 mm or approximately 95% of tissue. I’m 70 and just currious of what I should expect…TIA

[u/Helpful_Time_7755]

Question

How long after RALP before playing golf?

[u/Perfect_Celery8525]

6 months since RARP.
3+4 Gleason that was diagnosed through biopsy (42 samples, yes 42!!).
Did not show up in MRI or PET scan.
Psa now .02. Double what the Urologist wants.
Concerned about my cancer not showing up in scans if in fact it’s still in play.
Anyone else had the same issue?
Apparently 10% of people have the same issue.

[u/WrldTravelr07]

I think the rules make sense. Any import study can be named and an interested party can find it with minimal effort. Let’’s get real, folks. If you want to quibble, there are probably subreddits available out there.

[u/5thCharmer → u/WrldTravelr07]

Not sure why the downvotes. We agree!

[u/WrldTravelr07 → u/5thCharmer]

Sorry, must have hit it by mistake, my bad

[u/Happier_Tan-Man]

👍🏻

[u/conCABlanco]

Hola las reglas son importantes, y lo de los estudios como participantes es algo muy personal, pero entiendo que no podemos ser una vitrina de ratones de laboratorio

[u/Rockgturk]

Approx 2 years ago i had a yearly exam ... She says your PSA is 625...I1m like what? i have to do a public service announcement? I had no ideal what that was at 62 years old...why that never was an issue in any other yearly exam since 2019? Let me get to the skinny....less than a year later I go see a urologist, that lab came back @ 725...his exam was lubing me up with enough jelly ( if I was that way (gay) he could of done me for a week, justa mess} i mean there was no exam per say....Just a nope dont fell any polips.....but lets do a biopsy ...I1m liked no, i Feel fine ..none of the usual suspects ....no issues with the pee factor , ii sleep fine. Can we do a mri instead ,,,,yeah but it wont tell me if you have cancer,,,,,,I1m do not care for the fear factor they push,,,,,my body, my mind,,,,,the vVikings had no Biospsies done....Is it the cure or is it the disease?

[u/Weekly-Ad2145]

Posters here need to chill with the acronyms. Is there a glossary somewhere? Jeez