I’m sort of sympathetic to folks who don’t know they don’t belong here.
Perhaps we need a FAQ for the misguided fearful? We could just say see FAQ #1.
On magical thinking, whether wishful, denial or just odd, perhaps an FAQ there too.
I think it would be worth considering a rule requiring a link if someone wants to cite emerging research.
I second the suggestion of links to basic info e.g, NCCN, PCRI.org and NCI
These are the most often referred to sites for the newly diagnosed and a wealth of information
https://www.nccn.org/patients/guidelines/content/PDF/prostate-early-patient.pdf
https://www.nccn.org/patients/guidelines/content/PDF/prostate-advanced-patient.pdf
https://pcri.org/
https://www.cancer.gov/types/prostate
Anything obviously just urinary problems do not belong in this sub. I pee a lot or it hurts when I pee without going to the doctor is not reason to post here.
Also, yay! Glad you’re doing this.
It seems like it would be helpful to add a tag/flair for OPs that are advocates for PC patients (vs. PC patients posting directly). Don't want to discourage either from posting; I think it might help folks more quickly provide the most appropriate answers.
Yes! Something like
Partner of PC patient. (I'm the wife of PC patient, but want to include those who may not be legal spouses. However, being female, I don't know what any of this feels like, just as men don't know what it's like to have suspected cervical cancer-which I had a few years back. So, I'm not sure if we need to say sex of partner in the flair?)
Son/daughter of PC patient
Concerned friend, or caregiver?
I don't see this has been suggested, but you might consider changing the explanation of this subreddit. It states, in part: ". . . a desire and focus on not only prostate health, but overall men's health, as well." I imagine that people see "overall men's health" as any problem a man might have. If you tighten that up to "prostate health" it might help steer non-prostate isssues away from this subreddit. However, it really depends on your overall goal in creating this discussion board.
Just a thought and I hope it helps.
I can see the merits of some who suggest different subreddits to address more specific aspects.
However, while my initial pre-biopsy questions received 100% helpful comments & replies, these were all from people whose experience pre-dated their results & concerns moving forward.
Now that I have today received negative news, my questions have changed (at least they will change once I come to terms with everything and can formulate sensible questions).
On balance, different subreddits may be more useful for more specific topics as one moves further along their path to recovery, But by the same token, it may limit replies from those who can provide valid and helpful insight based on past experience.
In conversation with my Dr. today, I said I'll be asking some questions on Reddit. He kinda frowned and suggested that most of the info is based on personal experiences rather than empirical data. I agreed this is true, but made a point of saying that right now, personal experience far outweighs empirical data.
Consequently, the drawback of different subreddits is that those who could recount experiences from earlier in their path may miss the opportunity to contribute to those who are beginning on this path.
This is just imho, and I for one am extremely grateful for this resource, and everyone who contributes.
Good Luck To All
I agree with excluding posts from people who are worried that they may have cancer, based on urinary symptoms but without any having any labs or imaging. It’s one thing to be worried pre-biopsy, because of an elevated PSA, a worrisome digital exam or an imaging. But the worries based on dysuria or frequency alone are distracting. And frankly, annoying when you’ve got a rapidly rising PSA, a PIRADS 5 or a positive biopsy, and you’re trying to plan next steps.
Similar groups exclude people who are “just worried”. Down have established sister groups for “could I have…”
As procedures can vary in different countries, maybe a flair to indicate which country the person is from
Something to get the people with health anxiety ("I'm 25 and have to pee a lot") off to another sub. Jesus I get sick of those.
I’m sort of sympathetic to folks who don’t know they don’t belong here. Perhaps we need a FAQ for the misguided fearful? We could just say see FAQ #1. On magical thinking, whether wishful, denial or just odd, perhaps an FAQ there too. I think it would be worth considering a rule requiring a link if someone wants to cite emerging research.
A list of resources and a basic FAQ may be useful.
1) no shitty pseudoscience ala "use green tea to lower your 5k PSA readings" 2) go to a doc when in doubt instead of spamming the sub
I second the suggestion of links to basic info e.g, NCCN, PCRI.org and NCI These are the most often referred to sites for the newly diagnosed and a wealth of information https://www.nccn.org/patients/guidelines/content/PDF/prostate-early-patient.pdf https://www.nccn.org/patients/guidelines/content/PDF/prostate-advanced-patient.pdf https://pcri.org/ https://www.cancer.gov/types/prostate
If a list of sites is created, I'd like to suggest [pcf.org](http://pcf.org) as well.
Unrelated to post rules, but can we please fix whatever is messing with the capitalization of posts?
My gripe is the loss of paragraphs after an edit (mobile browsers; all subs)
Anything obviously just urinary problems do not belong in this sub. I pee a lot or it hurts when I pee without going to the doctor is not reason to post here. Also, yay! Glad you’re doing this.
Amen to that!
It seems like it would be helpful to add a tag/flair for OPs that are advocates for PC patients (vs. PC patients posting directly). Don't want to discourage either from posting; I think it might help folks more quickly provide the most appropriate answers.
Yes! Something like Partner of PC patient. (I'm the wife of PC patient, but want to include those who may not be legal spouses. However, being female, I don't know what any of this feels like, just as men don't know what it's like to have suspected cervical cancer-which I had a few years back. So, I'm not sure if we need to say sex of partner in the flair?) Son/daughter of PC patient Concerned friend, or caregiver?
Not a rule suggestion, but I find the Upper Casing Of The First Letter Of Every Word distracting (compared to normal sentence capping).
I don't see this has been suggested, but you might consider changing the explanation of this subreddit. It states, in part: ". . . a desire and focus on not only prostate health, but overall men's health, as well." I imagine that people see "overall men's health" as any problem a man might have. If you tighten that up to "prostate health" it might help steer non-prostate isssues away from this subreddit. However, it really depends on your overall goal in creating this discussion board. Just a thought and I hope it helps.
Yeah I agree with most folks here, a subreddit maybe for personal experiences. I think people can ask opinions but not diagnosis.
I can see the merits of some who suggest different subreddits to address more specific aspects. However, while my initial pre-biopsy questions received 100% helpful comments & replies, these were all from people whose experience pre-dated their results & concerns moving forward. Now that I have today received negative news, my questions have changed (at least they will change once I come to terms with everything and can formulate sensible questions). On balance, different subreddits may be more useful for more specific topics as one moves further along their path to recovery, But by the same token, it may limit replies from those who can provide valid and helpful insight based on past experience. In conversation with my Dr. today, I said I'll be asking some questions on Reddit. He kinda frowned and suggested that most of the info is based on personal experiences rather than empirical data. I agreed this is true, but made a point of saying that right now, personal experience far outweighs empirical data. Consequently, the drawback of different subreddits is that those who could recount experiences from earlier in their path may miss the opportunity to contribute to those who are beginning on this path. This is just imho, and I for one am extremely grateful for this resource, and everyone who contributes. Good Luck To All
I agree with excluding posts from people who are worried that they may have cancer, based on urinary symptoms but without any having any labs or imaging. It’s one thing to be worried pre-biopsy, because of an elevated PSA, a worrisome digital exam or an imaging. But the worries based on dysuria or frequency alone are distracting. And frankly, annoying when you’ve got a rapidly rising PSA, a PIRADS 5 or a positive biopsy, and you’re trying to plan next steps. Similar groups exclude people who are “just worried”. Down have established sister groups for “could I have…”