20,000 soon. Celebrate the high quality of support and Reflect on the state of prostate cancer

[Darryl]

Soon, there will be 20,000 members in our Malecare Advanced Prostate Cancer community. What does reaching this milestone tell us about the state of prostate cancer treatments and therapies? What does it tell us about Malecare and the 19,999 people who preceded the 20,000th?

[KocoPr]

Reaching this milestone tells us that prostate cancer treatments are growing in complexity and our medical system is overwhelmed with patients to be able to keep up with the latest treatments and options.

Malecare’s large and growing membership tells us that this forum is absolutely essential for newly diagnosed patients to have experienced and caring warriors who constantly navigate and research the latest SOC, trials and alternative approaches.

[JohnInTheMiddle]

Good question, which I will reinterpret as "why does MaleCare on HealthUnlocked exist? Why is it successful?" (HT to KokoPr for excellent first answer about complexity and bandwidth.)

I can also ask myself, "why do I visit MC on HU multiple days a week?" Because I have a need to know and I can't get it anywhere else. Some people say they come here for community but even while I get to know a few people and pay attention to respected forum members this is not where I find my community.

Here are some reasons why I think MC on HU is successful. Believe it or not I've actually thought about these things from time to time over the last almost two years.

1. COMPLEXITY - PCa and indeed any cancer is crazy complex and research is revealing more complexity all the time. Simple answers like "go on a keto diet because the Warburg effect" turn out to be not so simple. And also my physicians are not engaged in the complexities at least in terms of any mutual decision making. Participating in a good forum makes it possible to understand a bit of complexity in a way that can help one make better decisions.

2. DISAGREEMENT - my sister-in-law suggested don't worry "standard of care" ensures every hospital is the same high standard of care. Turns out this is not true -- and separately that sometimes you can go beyond standard of care. There are disagreements, some of which the patient might not be aware of, and the therapy decision can make the difference between years of life. Participating in a forum helps one learn that everything isn't cut and dried.

3. FUNDING BIASES - cancer decision-making is distorted by funding biases whether under the chaotic American system or a socialized single-payer system. Participating in the form makes one aware of the difference between funding-based decisions and medical decisions.

4. POLICY STRAIGHT-JACKETS - cancer decision-making from public policy overlaps with questions of funding. This is especially true with leading-edge therapy models such as triplet therapy. The bias against PSA testing is an egregious example of a policy strait-jacket. Participation in the Forum helps one understand decisions that aren't even on the table.

5. SPECIALIST TIME CRUNCH - it's astonishing how little time one has with specialists that are making life changing recommendations. Forum participants go in with better questions.

6. FORUM FAILURES - there are high profile cancer forums around for which people get a lot of kudos - but which fail to provide what MC provides. These failures occur sometimes because of lack of participation and sometimes, possibly related, due to poor design. One doesn't have much time to waste on low-value forums.

7. RESEARCH VELOCITY - PCa research and therapy knowledge is changing so fast that one's own doctors are likely not up to date. Be empowered and ready to ask better questions - or even make suggestions - during one's time with doctors.

8. COACHING MISSING - one of the main reasons for coming to this forum is that the idea of cancer coaching seems to be completely missing in the world of funded cancer oriented institutions. We have diagnostic and therapeutic programs. And then we have palliative care. But in the middle is missing the whole world of coaching. Where all the topics this note addresses would be covered - from treatment decisions to exercise and even supplements. For example the importance of exercise, beyond the paternalistic pat on the head or a single line in some pamphlet which suggests that "exercise us good for you". For quality of life. But exercise is revealed to be very good for you too in terms of possible life extension. But there's no coaching for that. Participating in MC HU makes up for the lack of coaching.

9. ANTIDOTE TO HYPE - because funded institutions are so limited in bandwidth and sometimes perceived as untrustworthy many people go to unreliable sources promoting unproven or even dangerous therapies against cancer. The well-moderated MC on HU, provided by both the admins and by the self-discipline of the participants, helps keep one grounded.

MC admin and governance team: well done and keep up the good work. And please keep evolving.

P.S. OK, I know it's not a very big team 😃

[Maxone73 in reply to JohnInTheMiddle]

I expected a 10. Maxone73!! 😜😂😂

[JohnInTheMiddle in reply to Maxone73]

LOL. I'm beginning to think I should get a day job. I started writing and couldn't stop. But maybe it might discourage other people if I'm writing? I don't know? I visit MC everyday. And it kind of highlights a big problem and having prostate cancer. So I was triggered to reply. People from around the world visit! And yet even if it's 20,000 people it's such a tiny percentage of the total people with metastatic prostate cancer. My overall impression is that despite improvements that a lot of prostate cancer therapy decisions may be suboptimal. Which is frightening. And of course that's in the context of the thing being terminal anyway. There's a lot of money going through the system. But the visitors don't stay there very long before they check out. It's hard to organize and advocacy group in such circumstances.

[Maxone73 in reply to JohnInTheMiddle]

Not sure about therapy, because like you I was diagnosed already metastatic. We have to resist!

[KocoPr in reply to JohnInTheMiddle]

If there is a silver lining is that prostate cancer patients do stay longer than other cancers patients. So in a way we have time to make decisions and our warrior cast is more experienced.

[Allan65 in reply to JohnInTheMiddle]

John your explanation is as multifaceted as the problem we face. I mean that in a good way, there isn’t just one reason why we as individuals come here over and over . I think your description is exceptional and hits home for me on many points . If I had to give the 30 second elevator pitch I would say “ I come for community, knowledge , reminders that regardless of what yesterday was and today is the QoL matters and make sure we get that piece in the equation, and finally to honor those who have fallen before us and appreciate their contributions to our fight”

[Gs-rider in reply to JohnInTheMiddle]

Nr 8, Coaching missing. Yes, yes, yes. This is so sad. There are so much that one can do to feel better and live a better life with this diagnosis. It is not easy and there are for sure dark days and nights. But omg what a difference everyones strength training coach would do, or everyones coach to good comunication and healthy relationships. I dont know all about it, I am no master, but I see some realy big gaps in the "system".

[Heykm01]

It means that you Darryl and the MC team and TA are doing an incredible job in providing a forum where there is an intelligent compassionate exchange of information to people that are in desperate need of it.

[6x942]

What does reaching 20 k membership mean? It means more people are getting sick. It means more pain and suffering. It certainly is not a reason to say hooray and celebrate.

[LongevityAT in reply to 6x942]

If this forum improved the longevity (mental and physical) of just one person then it has incredible value. How many of the 20k members have received some benefit that might have lengthened their lives or improved their life in some way, or the life of their loved one?

Ask yourself this. If this forum did not exist, would the 20k suffering from PC be no different today or is there even a slight chance their lives are improved?

My only disappointment in Darryl's post is that only 20k people searching for answers have found MC.

And John - thank you for your reply to Darryl. I'm saving your post to be able to share with any friends who one day may have a need for this forum.

[JohnInTheMiddle in reply to 6x942]

6X942 your point about "more people getting sick" is a very good one. And it's not just that more people are getting generically sick. It's that more biological males are being diagnosed with metastatic prostate cancer.

PCa should be caught before it metastasizes! But too many times it is not!

It's a fact that around the world there is still policy and prejudice against inexpensive PSA testing. And this is the major driver of the phenomenon where first time prostate cancer diagnosis is a diagnosis where metastasis has already occurred.

And why the bias against PSA testing? It can be traced back to an American 2012 policy decision against PSA testing, based on what I would say was criminally faulty reasoning.

If we think about the demand for information about advanced or metastatic prostate cancer, a lot of this demand can therefore be explained by the fact that PCa diagnoses are not made until the cancer is already metastasized beyond the prostate.

Here is the popular post (with so far 162 replies) that I wrote just a year ago, a little while after my own diagnosis of high-volume metastatic PCa.

PSA Testing Scandal - Lost Years of Life - Updated re: QoL

healthunlocked.com/advanced...

[Vangogh1961]

I recommend this site to the patients I work with. I have seen it's value in my own care and support during my treatments. Too often I hear the physicians still recommending treatments that don't seem to be SOC and I offer it as a tool in their treatment planning.

I think the growth is people trying to be more informed and the lack of general care leading up to the diagnosis. I was never recommended to have a PSA test until I asked for it.

[MouseAddams]

Finding MC at HU meant I was able to help my hubby understand his cancer better. We both were able to reach out to people who understood what we were going through. It’s a family and yes - a special place.

I now tell others of this community — so they can start learning immediately how to stand up for themselves and ask the important questions when it comes to their treatment.

[Hidden in reply to MouseAddams]

Well put. Bless you.