Decisional Regret

I decided on surgery after it appeared that there was enough change to discontinue AS. I have no regrets.

How much time did you think about your diagnosis and treatment options before deciding on your treatment? Answer: Over 6 months.

Do you believe you learned enough about the different treatment approaches for treating prostate cancer before undergoing treatment? Answer: Yes.

How true or false has the following statement been for you? “I felt that I worked with my doctors to mutually decide on the best treatment plan for me.” Answer: Definitely true

During the past 4 weeks, how much of the time have you wished you could change your mind about the kind of treatment you chose for your prostate cancer? Answer: None of the time.

How true or false has the following statement been for you during the past 4 weeks?
“I feel that I would be better off if I had chosen another treatment for my prostate cancer.” Answer: Definitely False.

This question asks about the short-term side effects. While undergoing treatment, were the short-term side effects you actually experienced less than or more than you had originally expected?
Answer: The side effects I actually experienced were significantly less than I had expected.

This question asks about the long-term side effects. After completing treatment, were the long-term side effects you actually experienced less than or more than you had originally expected?
Answer: The side effects I actually experienced were significantly less than I had expected.

Overall, how big a problem have your urinary, bowel, and sexual functions been for you during the last 4 weeks? (circle one number on each line)

(0) No problem (1)Very small problem (2)Small problem (3)Moderate problem (4)Very big problem
Urinary function 0
Bowel function 0
Sexual function 1

Allen,
As for me, I felt it was a very good post, (even far superior to the Z thread) and the survey, very thought provoking, thanks for the additional info, also. Just a side note, about the higher education etc...I might be misunderstanding it here, but sometimes those like my Urologist, who I am sure was light years ahead of me in "head" knowledge and education..are wrong, as he stated 5 years ago that I would be dead by now. Sometimes us less edumacated know more with our heart and desire!

P.S. I agree with Andrews outlook on the Zombie posts. Actually neither apply directly to me so I should actually have No opinion , but could not resist blabbing here. Respectfully.
Winging it aka Dan in no hurricane zone So Cal
All good fortune to those in the path of Irma!

The absence of proof is not necessarily proof of any evidence. You want to hold certainty in your hands and it can’t be done. It’s not available. The proof of life is in living and being aware of your humanness.

Just a little plagiarism.

Gemlin, while I appreciate the "realness" of the regret study, unfortunately it's very dated as these guys were treated over 20 years ago! That's before RALP, SBRT, HDR Brachy, stranded-seed LDR Brachy and IMRT were common. In other words these men most likely had the limited choices of open surgery or old style EBRT. So, I'm not sure how relevant this is to the current discussion.

Jim

Halbert,

You are correct that it was used as part of a study whose purpose was to demonstrate the importance of doctors fully informing patients:

/pcnrv.blogspot.com/2017/01/less-treatment-regret-with-sbrt-and.html

In this case it was used by the patients in the radiation oncology department at UCLA. It highlighted the importance of expectations, and the doctor's role in setting those expectations. As such, it is more a report card on the doctor than on the therapy. I would love to see the questionnaire expanded so that all doctors would receive this report card, and (wishful thinking!), their compensation would, in part, be based on it.

As it turned out, my RO got the best grades - only 5% of his patients felt they would have been better off with another treatment. IMRT, HDRBT and surgery (in other surveys, including this one: 21% so far) had about the same amount of treatment regret - about 18%. Most men do not have treatment regret, irrespective of their treatment. Those that did have regret were particularly disappointed by sexual outcomes. They felt that they hadn't learned enough, particularly about active surveillance.

So, N, our own little survey notwithstanding, where the vast majority of responders report "false" (54 of 66 as of now), most of us have decisional regret and won't tell on ourselves. And you base this on out of context quotes about the weirdnesses of the male psyche.

(to the mods, sorry about the combativeness, it's been a long day on the road)

What if it's true: that relatively few men, regardless of their choice of treatment truly regret it.

So what I find interesting here is those commenting about the study of a decade ago and how it relates to this un-scientific poll... Despite most not having any real treatment regret, in EITHER poll, those who can't believe THAT assertion/fact to be true have now labelled those who don't have regrets as suffering, "cognitive dissonance." As though we who don't have any real regrets (and lets call it correctly--- regrets about surgery, altho that focus/agenda is veiled by including other treatment options and educational level, particularly on the heels of the zombie thread...)

Funny how it's characterized as "cognitive dissonance" as though we (those who really have no regrets) either don't know that we should have regrets or we are/were ill-informed about treatment so that we really DO have regrets, we just don't know it OR how to verbalize them to people who want to believe that we should have regrets. Ludicrous.

At least ChrisR's thread was directly about SURGERY and not cowed in education and other aspects that complicate the issue of overtreatment... which is what both of these threads are about really. When ChrisR used terms like "butchered" and "crime," he was, of course speaking, from his gut, but he was being honest! And in that gut wrenching sort of way that only a number of people here REALLY can because they have experienced failures. He had a bad outcome. Of course there are regrets from that.

halbert said...
So, N, our own little survey notwithstanding, where the vast majority of responders report "false" (54 of 66 as of now), most of us have decisional regret and won't tell on ourselves. And you base this on out of context quotes about the weirdnesses of the male psyche.

(to the mods, sorry about the combativeness, it's been a long day on the road)

What if it's true: that relatively few men, regardless of their choice of treatment truly regret it.

It may well be true. At least for most.

BillyBob@388, you've help add some insight by breaking down sub-groups.

If you look at population analysis of men treated for PC, the largest group best fits the 3rd of the 3 descriptions you listed.

The way you wrote it was: "...or maybe even if he is cured and he realizes there was no real reason why he HAD to have that particular treatment and it's ruinous results, that man might feel a little different."

The largest population sub-group is men diagnosed with favorable-risk PC who seek a treatment that they probably didn't need (cured, but didn't need curing). The only remaining question to fit your description is whether they "realize," or don't (yet) realize, that they didn't need the treatment they sought...



edit/addition: don't shoot the messenger

Post Edited (NKinney) : 9/12/2017 2:13:59 PM (GMT-6)

I think there may be other issues at play when it comes to level of regret on treatment. There is some excellent and noble prize winning research on cognitive biases. Two that come to mind is “synthetic happiness” and “confirmation bias”. Dr. Dan Gilbert who teaches psychology at Harvard and is the author of “Stumbling on Happiness”, call this bias, synthetic happiness. Also, According to Nobel prize winner Daniel Kahneman, we all have confirmation bias which is we look for data that confirms our preconcieved opinions and decisions are justified.

For example, I have no regret on my middle of the road treatment choice of Focal Hifu for my G(3+4) lesion even though I have not eradicated this disease from my system. A disease mind you that is the second leading cause of death in men and I have two young children. I am happy with my choice for various reasons and constantly find articles, books and news that confirm my decision. Coincidence?

At the same time I am generally surprised on this board that many men that in retrospect may have been overtreated for PCa based on the clinical understandings at that time, and are still ‘happy’ with their choice. More than a perspective of best decision given the info at the time, I often read an expression of satisfaction despite side effects and new information.

This forum may have a bias toward people happy with their treatment choice. Who wants to constantly be reminded if they feel bad about their treatment? Maybe its better to just not participate in this forum which would be a constant reminder.

So the level of regret may be a function of synthetic happiness, which Gilbert reports is every bit the experience of real happiness, and the bias that I will find ways to confirm that I did the right thing, even if maybe I didn’t.

https://www.ted.com/talks/dan_gilbert_asks_why_are_we_happy

https://en.m.wikipedia.org/wiki/Cognitive_bias

Food for thought

BDubs

bdubs60647 said...
I think there may be other issues at play when it comes to level of regret on treatment. There is some excellent and noble prize winning research on cognitive biases. Two that come to mind is “synthetic happiness” and “confirmation bias”. Dr. Dan Gilbert who teaches psychology at Harvard and is the author of “Stumbling on Happiness”, call this bias, synthetic happiness. Also, According to Nobel prize winner Daniel Kahneman, we all have confirmation bias which is we look for data that confirms our preconcieved opinions and decisions are justified.

This is all very true. The men here are no different than any others, so of course the science applies in exactly the same way as other sample populations. But what I’ve found is the men simply don’t like being reminded of these facts, or having these facts about themselves pointed out. They’ll get quite defensive about exactly how satisfied they are, in fact. There a “human nature” element at play here, but I think it’s also linked to the very personal and intimate nature of the treatment side effects.

I find it interesting that this thread has come back to life.

It irritated me the first time around, and it still does--mostly because of those who can't seem to accept that most of us do not regret our treatment decision, that we really do regret it, but can't admit it to ourselves or others. I find that more than irritating.

And, at this point, I think I'll stop before I start breaking rules.