Yesterday, one of the other prostate cancer online communities, affiliated with a different patient nonprofit, emailed funders and advocates, boasting about their total patient engagements for 2019...."almost 500 new discussions started in the area of treatment options, prompting over 5500 new replies. When patients and caregivers started 148 discussions about being newly diagnosed, they received more than 2500 replies from fellow patients, who supported and educated them."
All communities on all platforms have helpful potential. In 2019, our community saw 5,654 new discussions prompting 93,685 replies. Eleven times the number of posts and seventeen times the number of replies that others are bragging about. I've broken these numbers down by communities, below.
You all are great. You have created one of the world's largest and, by far, the world's most active online prostate cancer communities. You've saved lives, you've increased happiness, and you've challenged the world to create better treatments and tests. Please feel proud and gratified. Celebrate with the drink of your choice and by inviting our brothers and sisters to join us.
In 2019, our online communities:
Advanced Prostate Cancer:
Posts - 4700
Replies - 85394
Erectile Dysfunction Support:
Posts - 82
Replies - 504
Prostate Cancer Network:
Posts - 452
Replies - 5117
Prostate Cancer And Gay Men:
Posts - 302
Replies - 2133
Active Surveillance - Prostate Cancer:
Posts - 75
Replies - 336
Prostate Cancer Caregivers:
Posts - 43
Replies - 201
Written by
Darryl
Partner
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I'm not, and I am far from a dumb dumb (except at the moment due to chemo brain). The reasons I know he's smart is his ability to explain things and his willingness to seek out opinions from other doctors, including bringing my case before a tumor board. But also, I see men with rare cases similar to mine come here, ask for advice and referrals to the best MOs, and end up with the exact same treatment regimen I'm getting. This forum has confirmed that I'm getting excellent care, and has educated me about other options that so far I haven't had to pursue.
In order to make the best informed decisions, we all need to learn as much as possible. Nobody cares more about your life than you do. Everyone owes it to themselves to become as educated as possible. Your life literally depends on it!
We fight, we argue, we disagree but the men as well as women on this site, are ONE family, and I am proud to be involved. I also want to thank you Darryl for your efforts at keeping this site going and us under control. You are to be commended for this!!
This site has been a huge benefit to me. Thanks Darryl for all you do. I use what I learn and I enjoy trying to help others with things I’ve learned. I take notes and I bring questions to my MO. He always listens and sometimes (not always for sure) changes his treatments and or testing protocol based upon my questions and suggestions. He’s even admitted once that he learned something new from me that I learned on this site. If your MO makes you feel stupid or ignores your questions and suggestions than find a new MO.
Darryl, this site has meant the world to me as I have continued on my journey. I start off every day reviewing it. It has helped me understand better what I am going through and has helped to inform my treatment discussion with my doctors. The knowledge and compassion shown by so many contributors is amazing. You should be proud of what you are accomplishing each and every day!
Very happy and gratified to be on this site, and also to have been able to attend the MaleCare conference in October with my newly-diagnosed-with-metastatic-pc husband. Decisions have been helped by this forum, and companionship from "those who know," and I'm happy to share ideas, and things we've learned along the way. In 2009, we became a part of (and still are in) a support network-family when my then-teenaged daughter had leukemia (which she survived)-- so we came into this forum knowing how important this support is. Thanks to every one of you who has shared support, ideas, stories, and a caring ear with us!!!! We're celebrating.
I have three PCa sites on my "favorites" list. Malecare is one of the. The two others are very helpful too. I encourage you to seek important info on the web anywhere you can find it.
This website helped me greatly after moving to a new area with no support system. It’s my support group as well as my biggest knowledge resource for my husband’s pCa.
This site has been of considerable help and support to me and my family. Firstly, in assisting my late brother sustain himself, mostly with a good QOL, in his battle that sadly ended in January 20.
Secondly, in giving me a host of research pointers in preparing my recently released (and my third) Prostate Cancer book. The book is a far better product by me being able to access the collective wisdom of the men and women on this site.
It is clear to me that many men (but not the majority) do NOT get adequate support from their medical teams. This includes lack of latest information, being strongly wedded to SOC protocols, being too much of a generalist in the speciality, etc. The members of this board know who the top flight doctors are and are quick to offer advice.
Finally, a great thank you for Darryl for maintaining this board in good order. It is very easy to see it deteriorate into a shouting match.
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