GUIDELINES

[Cyclingrealtor]

Guidelines are evidence filtered through opinion. The opinion is crucial - but whose opinion should it be?

I saw this in an article and found it VERY fitting for so many of the discussions we share here on HU.

Many times we see people regurgitating clinical trials on HU like they are the end-all-be-all gospel for everyone to use. Every man who is XXXXX state of disease gets XX treatment.

But what we see over time is using that kind of ego is like recommending "standardized care" for every prostate cancer patient that has X state of disease. I think we can support this detriment with all of the treatment failures discussed on this platform.

Guidelines and clinical trials are just "evidence filtered through opinion" is what I see. And many times we see updates and changes to clinical trial protocols as they develop.

I bounced out of the STAMPEDE protocol at 24 months of leuprolide and 18 months of abiraterone vs the 36 months. This wasn't just something on a whim but after a discussion with my MO who felt that the difference between 24 vs 36 months may be a single digit percentage of difference of benefit.

Was I guaranteed a cure at 36 months and I forfeited that opportunity? Or was my uPSA of < .006 for over 12 months with adt and so far 7 months post adt truly indicating sufficient treatment? Will I have durable remission? If, so for how long?

What's the empirical evidence showing I have made the right or wrong choice?

Did my RO allow me to make the wrong choice?

I just really appreciated this statement and found it fitting for those of us who walk in the shoes of advanced disease and/or recurrent disease.

[addicted2cycling]

I was a FIRST to put the shoes on for what I had and what I did. No one before me to ask questions of, no one before me to see statistics, no one before me to see how well things had been turning out or not.

Sometimes the damn the torpedoes and full speed ahead works OR not. One guarantee is we all die.

[Doctorsceptic]

Oh boy! I do agree with you. As a retired physician I feel that the one size fits all is just wrong. The clinical trials are not the be all and end all. Each patient is individual and their wishes and goals should be paramount.

Trials give results for large groups, they are very important and give the best concrete proof of effectiveness but don’t predict outcome for an individual.

For some patients longevity trumps everything and for others QOL is more important. Age does affect patients expectations and wishes - it I had been 55 at diagnosis I would have thrown everything at it. At nearly 80 I want to minimise all the medical crap and enjoy what I have and not waste valuable time on hospital visits tests and side effects.!

Wise doctors listen to their patients and hear what they say. Too often it is “ I follow the protocol “ without intelligent and empathic adaptation to the individuals wishes and needs or their current circumstances and health status. The benefits of some modern therapies are often overstated and not adequately balanced with the human cost in terms of side effects and consumption of time!

One good example is the use of new androgen receptor blockers in the over 75s - the data for benefit in terms of longevity is frankly pretty equivocal. Especially in those with evidence of cardiovascular disease. Do oncologists consider that? Mine did not. How many patients are warned of dementia risks with ADT? I suspect very few but the data is there in the literature

Here endeth my rant for the day!

[Mgtd in reply to Doctorsceptic]

Great input! Interesting how age affects how we think and approach treatment. At almost 80 I have a very different prospective of treatment options then say if I was 60. I see this also with my MO whereas my GP totally understands.

I see that with one of my sons who is just now facing the reality that his dad will not be here forever.

I understand that having gone through the loss of a parent. The reality of losing a loved one is like cancer. It is very unique to the person.

Thanks again for you prospective.

[T911]

Your post has much meaning to me as I recently abbreviated my own ADT regimen. One can get lost in studies showing only time lines to BCR or timelines to progression. You should also notice that the timelines of overall survival do not parallel those lines but begin to rise well before maximum adt benefits are reached. I've seen some that show max OS benefits at 18 to 19 months of ADT treatment for those with certain comorbidities. The challenge is finding the sweet spot that gets you the best ADT results without excaberating your other problems out of control. Finding the best balance of Risk versus Reward is a difficult decision. The old chicken and the egg joke between Cardiologists and Oncologists as to who is more responsible for the patients death is brought to mind.

[j-o-h-n]

Like Socrates said: When you make someone laugh, it makes you laugh so therefore it's a two for the price of one bargain. Now what were we talking about?

Good Luck, Good Health and Good Humor.

j-o-h-n

[Mgtd in reply to j-o-h-n]

Think you were looking for the conflict of interest paperwork or your divorce papers. I got confused but at our age that is part of life.

[j-o-h-n in reply to Mgtd]

You're so right...........and thanks to you I found the conflict of interest paperwork in the found but it's not lost yet, file.

Good Luck, Good Health and Good Humor.

j-o-h-n