What do the experts do?

[Mike58]

Just out of interest, has there been any Urologists, RO’s, or MO’s on this forum who are on our PCa journey that have given us their treatment plans? I’m pretty sure, like any profession, they are not immune from this disease.

[Derf4223]

I'm not a doctor of any kind, but AFAIK they follow the NCCN guidelines which are revised frequently.

[Kaliber in reply to Derf4223]

Tall_Allen is our primary knowledge / brain trust . There are many knowledgeable brothers here tho.

❤️❤️❤️

[NDJIM in reply to Kaliber]

I absolutely ask Tall Allen for advice. I don’t know exactly what his medical training program s, but I’m always impressed with his wisdom.

[Kaliber in reply to NDJIM]

His credentials are impressive and he definitely knows his chit . We are really lucky to have him here.

Have a great Christmas brother

❤️❤️❤️

[NDJIM in reply to Kaliber]

You too Kaliber…best wishes from my family to yours. AND yours too Talk Allen 😊

[Kaliber in reply to NDJIM]

❤️❤️❤️

[Derf4223]

They don't treat themselves

[addicted2cycling in reply to Derf4223]

Derf4223 wrote -- "They don't treat themselves"

NOT SO -------

youtube.com/watch?v=STA5_je...(Not working as expected?)

[Derf4223 in reply to addicted2cycling]

Good stuff. But my bet is most doctors with PCa in the end do NCCN SOC stuff unless their case is atypical.

[maley2711 in reply to addicted2cycling]

Thanks for posting that video with Onik. Certainly some interesting anecdotal "evidence" of this new approach to immunology for metastatic men.....if it proves out eventually to satisfy the approval process, it willl be a shame that apparently the treatment won't be available for so many men during that testing/approval time.

Also, his "study" of 70 men who underwent his focal cryotherapy treatment certainly indicates very good results......with continence maintained!!!!!!!!!!!!! The Q&A section of his wbsite certainy has some intersting perspectives re men who are recurrent after primary RT treatment.

[DataDog2020 in reply to maley2711]

I’m just curious; Why would a person wait until they have cancer that mentasticises, and not get immuno-therapy as part of the initial treatment for killing the cancer? Why wait until it is “established” in a bigger way?

[DenDoc]

While this forum has a lot of expertise among its members, one of my disappointments is that it is not moderated by identified experts who could cut to the chase on many questions that are pretty basic.

Yes, Urologists, Medical Oncologists and other experts get our least favorite disease and those I know get SOC but likely have less trouble dealing with the system.

Denver has a chance of a white Christmas this year(rare event here).

[mababa in reply to DenDoc]

Dendoc, I think what you point out is that we (we warrriors) need to utilize multiple forums to garner as much info as possible to combat PCa. I appreciate this forum for offering a real-time pool of personal experiences regarding the mental and bodily effects of treatments and of the PCa’s progression itself. No single forum will be a “provide all.”

[j-o-h-n]

They die.............

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 12/23/2023 2:47 PM EST

[MaxWife]

They get SOC and are constrained by the same red tape as everyone else. The only advantage they have is knowing how the system works and having “back line” numbers to their doctors, nurses and pharmacy. Having a nurse or doctor in the family or as a trusted friend can be very helpful in navigating the system.

[Mike58]

thanks all for answering this question and for posting that video. Most interesting.

In summary the “experts” still have to endure every thing that PCa will throw at them but maybe they have the added advantage of working with the best and knowing from experience what might work better for them.

Thanks again. 😊

[dhccpa]

I doubt real MDs ever join forums like this.

[MoonRocket in reply to dhccpa]

You're probably correct...they get their information right from the source via CMEs.

[SimMartin]

well I am not a doctor but a psychologist and psychosexual therapist and so have had patients with PCa and on treatment over the years. Naturally I picked up incidental knowledge as well as oddly 2 medical colleagues in the same department getting PCa. The reality is that when it happens, all the same fears, anxieties and impacts happen.

My own journey dealing with the medical decisions and my particular issues as had polio as a child and severely paralysed means I have lotta of personal and professional experience of dealing with both chronic and life limiting conditions.

I struggle just the same as everyone else - All the strategies and psychological treatments - I know only too well how they work to support mental health ups and downs as well as the relationship stressors when on ADT not least fatigue, mood, libido and erectile function

maybe not quite what you were asking but I think most of my medical colleagues who had or have PCa follow the SOC - sometimes plus some extra lifestyle changes- but basically they as I do make my decisions around good peer reviewed research which leads you down the usual SOC and the choices made with the MDT. And every patient is different!

If you want a short but excellent read from a doctor who developed PCa, though not an oncologist, he was amazing doctor and brain surgeon who worked in the hospital I worked in and actually operated on my father. I can recommend Henry Marsh - And Finally. All his books are interesting and offer an incredible insight into being a doctor (in the U.K. at Least!)

And Finally: A Neurosurgeon’s Reflections on Life amzn.eu/d/e9Mbhgl

[Mike58 in reply to SimMartin]

Thanks Sim for your very interesting reply. I gather that your experience with what you are going thru can greatly assist you in your work albeit it’s not really what you would want.

Thanks for taking the time to reply - I’m sure a lot of others will find what you have said very informative.

Take care and all the best for 2024+

[Tony666]

This is a great question. In my case, I asked my sister who is a doctor who asked recommendations from other doctors and this definitely helped me make a decision on treatment.

One might think in the age of big data, AI and expanding medical data bases someone would create a site where you could input your situation and ask what most doctors do in your case. But as far as I know it doesn’t exist.

A business opportunity awaits for someone to create it.

[Mike58 in reply to Tony666]

Thanks Tony.

Actually, AI isn't that far off for helping with all that you have mentioned. In fact, if you copy and paste all of your test results into ChatGPT and ask it to reword in simple-to-understand wording, it does an amazing job at doing that.

Some of the reports you get with say and MRI or PET Scan etc, can be really difficult to fathom if you are not a specialist, but ChatGPT simplifies the terminology so seamlessly and within seconds.

It truly is an amazing tool that is getting better every day.

[Darryl Partner in reply to Mike58]

Cancer Copilot does that too