Please share your personal experience... - Advanced Prostate...

Advanced Prostate Cancer

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Please share your personal experience and references, but check your biases at the door

ron_bucher profile image
10 Replies

I appreciate links to studies. I do not appreciate interpretations of studies by anyone other than an experienced and qualified MD. In my opinion, your input would be far more useful if you let the studies speak for themselves. Cutting and pasting excerpts is an indication of bias by the person doing the cutting and pasting to support his strong feelings about a treatment.

Every treatment decision I make is based on potential benefit versus potential harm to me as a unique patient. Someone on this site "cited" very minimal benefit from Docetaxel and presented Lupron as more harm than good. I'm 3+ years into my 3rd remission after Docetaxel and Lupron. I hated Lupron, but if it helped stall my cancer while I had other treatments, then I'm happy.

I've seem some guys in other forums bad mouth certain treatments in general (prostatectomy and radiation) by emphasizing the downsides without even mentioning the upsides. As someone who had both, I find that type of criticism offensive, and useless or harmful for new patients. The same applies for any treatment - a lopsided presentation of the treatment can be offensive to guys who have had the treatment, and useless or harmful.

Studies are useful for public health and training MD's, but not necessarily as useful for individuals making individual treatment decisions - because:

- every case is unique,

- every patient is unique,

- studies require professional interpretation,

- virtually all studies have flaws, and

- proving cause and effect is virtually impossible (even though nearly every study implies that correlations are cause and effect).

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10 Replies
Steve507 profile image
Steve507

🙏💪👍👌🦍

Shooter1 profile image
Shooter1

THREE YEARS + INTO THIRD REMISSION. Keep it up. I agree with most all you said and I too am unique as are my results to treatments. Gleason 9/10 metastasized at start and in remission as I type this. Life is good..

Thanks for the post. I feel the same way.

There are people on this forum with their own personal agendas, trying to prove something. We should be here offering support and trying help patients find the best treatment for them specifically rather than promoting our own agenda, potentially at their expense.

I would very much appreciate it if people do not disparage the Standard of Care treatments that many of us need to extend our already shortened lives. It's very discouraging and quite selfish. If you don't need the treatments that's great but please keep the biased, subjective criticisms to yourself.

noahware profile image
noahware

ADT = hypogonadism = a potentially harmful disease. It's simply a medical fact, and not a subjective opinion. To state this fact is not the same as telling someone "don't do this." It is information that others can either explore or ignore.

Now, if one was to mention this as a potential downside to treatment without even mentioning the upsides, doesn't the fact that ADT has been the established standard of care for nearly eighty years imply that it probably has some upsides? Of course it does.

Everyone knows it does, or it wouldn't keep being given to millions of men over many decades. (And the same goes for surgery and radiation: a potential upside HAS to exist.) So it seems unneeded to spend time telling people that RP, radiation or ADT might ALSO have upsides. The benefits are implicit, and are obviously discussed by the docs and fellow patients.

Suppose I want to mention something I believed was potentially harmful. If I tell someone that drinking a few gallons of water in a short time might lead to water intoxication and death, am I someone giving a "lopsided presentation" if I fail to give equal time and discuss all the many benefits of water? Because they might not know that water is ALSO good for you, and they might decide to stop drinking water, based on my presentation?

Those who make any decision based on potential benefit versus potential harm should pursue a variety of sources. Will each and every source be "balanced" and "unbiased?" Of course not. Where in life does that happen? And do you actually think urologists and MOs and ROs and researchers (who design trials FOR drug companies) are all entirely free of bias and without "strong feelings about a treatment?"

Thank heavens this is NOT just a site that is a cheerleader for everything "standard of care" that pretends there are not a variety of potential downsides to many treatments, because that is exactly what many men get from their docs (as I did).

This is a forum, an online discussion site where people can hold conversations in the form of posted messages. A discussion site is for "discussing" and interpreting and it would be silly to think all discussions would or should consist only of participants without bias and without strong feelings, who all interpreted information in the same matter, and who all wanted the same thing out of a forum. Vive la différence.

ron_bucher profile image
ron_bucher in reply to noahware

Bias and “strong feelings” are perfectly fine as long as we apply them to ourselves and not to others.

in reply to ron_bucher

Agree. DFTT.

George71 profile image
George71

Here is apparently a novel way of thinking for this group.... we all have late stage PCa.... --- how about we see if we can’t find better treatment options? The treatments available are sorely lacking.

ron_bucher profile image
ron_bucher

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Your participation in HealthUnlocked should be with respect, honesty, and in the spirit of supporting and learning from your fellow users.

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Gearhead profile image
Gearhead

Are you concerned that you might be duped on misled by a post? Or are you concerned that I might be duped on misled by a post? Perhaps you should give us some credit for critical thinking capabilities. I appreciate all posts. Any form of personal experience, study citations, excerpts, or summaries are fine with me..... whatever the poster prefers. Obviously, some posts that purport to convey treatment and other medical information need fact checking and validation.

George71 profile image
George71

you mean like this:

gregg57

He tries to use this group of patients to justify his anti-ADT rants. In another post he makes a general statement that "ADT does not extend overall survival", then uses this group to justify it. Then the nonsense about how terrible it is to become castrate resistant ..

or this

ron_bucher

"A video with no other references? No thanks."

I don't agree with half the stuff you and gregg57 say but I don't post stuff like that -- it clearly is not in keeping with the forums guidelines

WE HOPE THAT USERS WILL RESPECT THE RIGHT OF OTHER MEMBERS TO PRESENT THEIR INDIVIDUAL EXPERIENCES , REGARDLESS OF WHETHER OR NOT THEY ARE IN AGREEMENT

If it doesn't have enough references -- to suit you , just don't watch the video.

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