Is there a moderator?

@ucla2025
I know for me and many others the mental side of having cancer causes a lot of anxiety and stress. You come to MCC to read the personal and direct experiences of others and for those on MCC to be an inspiration.

That my friend is what I see your post are about. Just know many others have had serious and long time dealing with serious prostate cancer with many side affects and problems. Sometimes that brings a different outlook and different type of posts.

I think which I try to do is every time you post asked am I giving just my personal experience with the subject and I trying to be an inspirations to others. Now the offset of what I just typed is those who are just starting their journey and their personal expereince and knowldege is very limited not able to be an inspiration as they have not started their journey beyond diagnosis or first sign of the issue.

Thus the mental side of having cancer is very important to thsoe just starting their journey. If I am in doubt of how to respond to a post I clink on the three dots and asked for guidance from montior and/or director to help me stay within the guidelines of my personal expereinces and being an inspirations to others.

Here is some information about the governance of Mayo Clinic Connect

-Why & How Mayo Clinic Connect is moderated https://connect.mayoclinic.org/blog/about-connect/tab/moderators/
- Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/

@ucla2025, it sounds like you may be receiving some comments that may come close or actually cross the line according to the rules outlines in guideline number 1:

1. Be careful about giving out medical advice
- Sharing your own experience is fine, but don't tell other members what they should do.
- Experiences and information shared by members on the Mayo Clinic Connect are not a substitute for professional medical advice, diagnosis or treatment.
= Never disregard professional medical advice or delay in seeking it because of something you have read on the community.

In guideline 2, the sub-bullet outlines that "Personal attacks against members or health care providers are not acceptable. Such posts will be removed."

If you see a post that you think is inappropriate or would like to bring it to the attention of the moderating team, please report it.

How to report:
1. Click the 3 dots (...) in the lower right corner of the comment.
2. Select "Report comment"
3. Write the reason for the report and SUBMIT.

I have spent many hours on this site. I have learned so much from the inputs on here. I have found the moderators to be excellent fellow sufferers that contribute their time. This is social media. I would not expect to ask a question that I expected to get the same answer from everyone but I have never felt like it was a personal attack. I take all the answers and move on. My cancer was a gleason 6 3+3 with a PSA of 1.0. biopsy was 1 out of 12 with cancer. No other testing. I had LARP. I am now both incontinent and ED issues. I have had almost everyone on here tell me I was crazy for having it removed. I was told my urologist should be examined. He was not from a center of excellence. I appreciate the comments and determined an alternate course. There is so much knowledge on here that I have sent a couple guys to the site. I think most are expecting a straight answer from someone that finds themselves on the same boat. I can appreciate that the moderators prefer you say of course check with your Dr. But I prefer to get an alternate opinion that I take to my Dr.

Everyone on this forum is trying to be helpful and can only base their comments on their own personal experience, whether they are the patient or a caregiver. Just as in everyday life, some people are more direct and even prescriptive in their comments, while others are more matter of fact or even gentle. I know it is hard not to be sensitive when we are all going through such scary and uncertain times with prostate cancer, but please don't take personally the comments that seem too direct or even harsh. I have found that comments questioning a provider's advice or treatment plan based on the author's personal experience can be very helpful and can give us good questions to ask or prompt us to get better care. It helps me to take a deep breath and realize that the commenter is sincerely trying to help.

@jc76 Thank you for the time and effort you put into your kind responses. I appreciate it very much. I think the best thing for me to do at this point is to refrain from participating. It has just added more stress on top of everything else we are dealing with. I wish you well.

@tuckerp I have learned a lot here and I have found much of the information and different viewpoints extremely helpful. The criticisms, not so much. It’s one thing to provide helpful advice but quite another to tell someone they are doing things all “wrong”. I just can’t take on any more stress. Thank you for your support.

@lag Yes, I get that. Maybe I am too sensitive. Whatever the case, when I find my participation is more stressful than helpful I know I need to withdraw for the sake of my own health. I was so upset last night my husband told me to get off social media and talk to him instead!

Medicine is the artful application of scientific information. I do not envy the clinicians that are inundated with
new information. I was quite surprised that my radiation oncologist (RO) was unaware of the PROSTox test which assesses increased risks of delayed urinary tract symptoms by the different external beam sources [EBERT]. I asked the surgeon (SO) about seeds (permanent/ interstitial RT) as an option. He said "Try to find one". What he did not say was that the profession is no longer training clinicians proficient in seeds.
[Ironically low dose permanent (LDR) seeds provide a higher dose than temporary high dose temporary brachytherapy (HDR). Guess which is the more remunerative technology? My genitourinary oncologist (MO) was unaware that short term androgen deprivation therapy of 6 months (STADT/STDT) may be within 15%
to equaling long term benefit of 18-24 months of androgen deprivation (LATD/...) , i.e., for some with a certain biomarker. But then I saw Mark Scholz MD's comments indicating that the patient may be better informed on their disease status than the doctor.

One more caveat: unseen forces (juggernaut) of the 'industry' are always a consideration. Thinking 'out of the box' is not typically rewarded. Guidelines based on historical data cannot incorporate certain newer inputs that might be very relevant. One thing I have noticed on MCC is that insufficient data is given and opinions solicited. Then there is two or three back and forth replies. Some have taken the bait to 'get over their skis' without knowing all that one's doctor knows.

@ucla2025, your feedback on how comments affected you reminds members that words matter. We only have text on the screen to share experiences, advice, and viewpoints, without the benefit of tone of voice or body language.

Members should not frame their tips and experiences as absolutes, i.e., that someone is "wrong" or making a "wrong" choice. Please make considered choices in your words everyone and think of how they might be received 🙂 ❤️

Cancer - especially prostate cancer - involves many variables and tough decisions about treatments and more. It's a steep learning curve for the patient and caregiver. Information gathering can be overwhelming.

@ucla2025, the most important thing to remember is that the decisions are yours and your husband's along with his excellent cancer experts.

@ucla2025 Yes. I get it. But this is where you come when you want real answers. Its not an unsensitive group. You want to know what someone else has found to be their experience. Thats why you come here. My wife was diagnosed with GBM. Its a terminal cancer. There are some that survive. But its like all cancers. Maybe they caught it really early. Maybe it did not have the same DNA. Maybe the persons immune system was better. I joined a facebook site called GBM thrivers to survivors. That site only allowed positive statements. They preferred only the patient. Another site was for caretakers. Every Dr you see gives you some hope. That facebook site and the Dr's while helpful didnt change the outcome. I appreciate this site. It based much more on fact. I dont participate much with asking questions. I caught my cancer early and have had zero PSA for 6 years with no medications. I do suffer from Incontinence and ED. I have nothing much to offer. But I very much enjoy the conversations. I find something helpful daily. I would like to ask you to stay. If the comments are hurtful or sensitive then dont ask questions. You can do a search of almost anything you want to know and just read the comments.