Is there a moderator?

@heavyphil yes ironic. Thanks for the story. We found out thru an MRI at Banner hospital in Mesa Arizona. Jan 4th 2021. Right during COVID. We were assigned the only neuro surgeon. An Asian lady ex military. Very straight forward but quite good. Surgery was as soon as we could get a bed. No visitors. We were then assigned an oncologist. He told us after surgery results were back that we had 8-12months . Dont do anything else just go live life. We immediately switched to Barrows IVY center. New brain tumor center in Phoenix. We had the best. She lived about 1 years with some quality. Two more years of pure torture. Died Nov 10, 2024. Barrows always pushed to try the next thing. Never saying we dont have a chance. But we never had a chance. They took that tumor out and had the DNA results everyone knew but me.

@jimgaudette
Couldn't be said any clearer.

It probably would take me page to write what you wrote so accurately in a paragraph

@jc76 Thank you

Something I learned in a 12 step program has proved to be a great help in other areas. It's an unwritten rule - we don't tell others what to do , we tell others what WE did. Advice tends to be more welcome when it's framed that way. As opposed to someone coming to your house and forcing it on you. Example- I did some some research and determined that a plant based diet was the best way for me to go to help prevent cancer and heart disease. And I also use Joe Dispenza meditation techniques. I 'm not telling YOU , that YOU need to do this, I'm just saying that's what * I * did. If you want to know more, I''d be happy to share or you could look into it yourself.

@tuckerp I'm sorry for everything the two of you went through. Some cancers genuinely are like that.

The challenge for ours is that treatments have changed so fast that no one's quite sure what our prognosis is any more: some, like my initial medical team, err on the side of avoiding false hope, and give too negative an outlook (I believed in 2021 that I might not even be alive by 2026, and my family and I had to deal with processing that). Other oncologists believe we've reached a point where oligometastatic prostate cancer might even be "curable" (really, long-term remission), while polymetastatic prostate cancer might be manageable indefinitely as new treatments keep emerging.

So unlike some other types of advanced cancer, we do genuinely have hope now, but not certainty (or even clarity). Advanced prostate cancer treatment is crossing a threshold: some oncologists and urologists are hesitating until they can be sure the new treatment practices aren't just a flash in the pan and give give durable results, while others are leaping through with both feet into a future that's still hazy.

I appreciate the feedback from everyone. It is our objective to create this space where people can share experiences and evidence-based information as well as give and get support.

I encourage all members to review the guidelines that govern this forum. These rules of conduct help us to keep the forum safe, supportive, inclusive, and respectful.
- Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/

The experiences of other patients and their caregivers remain invaluable. There are many decisions and challenges on the bumpy road that is the prostate cancer journey. No two people's experiences are the same, but we can learn from each other.

No one here is the expert in all things prostate cancer. They only have their experience to share.

That said sometimes members will share helpful resources or information outside of their own personal experience. If you do so, please include links to source of the information.

EXCERPT from the Guidelines
Mayo Clinic provides high quality, expertly developed health information. Visit https://www.mayoclinic.org/

Medical tips or information may be removed if a member:
- Tells another member what to do.
- Attempts to provide a diagnosis for another member.
- Makes a medical statement that cannot be verified clearly as coming from their own personal experience.
- States information as fact or makes a claim that is not properly referenced.
- Spreads misinformation about unproven therapies.
- Posts a message that was generated by artificial intelligence (AI) without a disclaimer or personal experience. (See guidance here https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/what-is-generative-ai-artificial-intelligence-what-does-this-mean-on-mayo-clinic-connect/)
- References information that is not evidence-based and/or does not come from a verified medical expert source.

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.

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@tjv1156
I completely agree. It is why MCC guidelines are to post your personal experience with the subject.

When you move from this is why I did this and why you get into giving medical advice, prognosis, diagnosis, and what treatment another should do. That is not the purpose of MCC.

Good post @tjv1156

People just want to help you. I was bombarded 2 with so much info but learned over time which helped me in the long run

Didn't know they had a moderator!!

@asolidrock
If you read Colleen Young post further up you will see mentioning of reporting a post to the moderators. If you look down at a post you will see 3 dots. That is where a box will come up with a report post. That will go to moderators.

Don't confuse the mentors (like I did) with moderators. Mentors are there to help with discussions and help. Moderators are there to monitor posts. Colleen Young is the Director of MCC and also monitors posts.

I once posted monitors referring to moderators and got some responses to that but should have used the term moderators not monitors. I have no problem at all using the term moderators.

I hope my post helped. MCC is an excellent source of information from those who have gone through their personal journeys with a disease or mental health concersn.

Colleen's post (above) is excellent guidance and should be used to guide those doing post and asking am I following those policies and guidance.