HealingWell
Search Close Search
☰

Decisional Regret

Support Forums
>
Prostate Cancer
True or False:I feel that I would be better off if I had chosen another primary treatment for my prostate cancer.
I had surgery and "true" - 14.6% - 14 votes
I had surgery and "false" - 54.2% - 52 votes
I had radiation (any kind) and "true" - 0.0% - 0 votes
I had radiation (any kind) and "false" - 25.0% - 24 votes
I had active surveillance and "true" - 1.0% - 1 votes
I had active surveillance and "false" - 5.2% - 5 votes
✚ New Topic ✚ Reply
1 2 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/12/2018 2:05 AM (GMT 0)
What about the 'Not sure I even had cancer to begin with.' question.

I had surgery 5 years ago next week, and NOT ONE darn THING HAS CHANGED, except the erections are forever gone.

So, my answer to the poll is #1
And I still question whether I even had cancer.
Oh well, live and learn...
Posted 3/12/2018 2:28 AM (GMT 0)
I actually agree with Halbert. And I freely admitted in this thread that while I don't regret my decision outright, I do wonder at times, if SBRT would have given me a better chance of BCR. Of course if my PSA wasn't rising I wouldn't even give it a thought.

But Halbert point is valid. There is an undertone at times that subtly suggests that "you just don't want to admit that you might have made a bad decision.
I think for many, if not most of us,that's far from the truth. And it can be irritating
Posted 3/12/2018 3:25 AM (GMT 0)
If you really want to experience regret fully, I advise planning for it in advance. For example, I just had my first early-SRT fraction today. It so happens that in the past two weeks, I've started getting erections that approach woodiness. If early SRT+ADT leaves me as flaccid as a flagellum, I will regret treatment regardless of whether I'm cured. If cured, I'll suspect I let myself be overtreated, that sans tx my PSAs would have continued to hover just around 0.1 foreverandever and I'd have been in penetration heaven. If not cured, I'll believe secondary treatment did not buy me meaningful additional time, and at what price. Thus, the only marginally favorable outcome of SRT+ADT will be if I regain useful woodiness, which it looks like I was on the road to anyway. I am now perfectly positioned to enjoy my regret, as I could only truly appreciate the fruits of secondary treatment if I had access to the the Bizarro alternate universe where (1) I did not choose SRT+ADT and (2) my PCa progressed.
Which is why the key move is not to avoid regret itself but to reject the rhetoric of regret, the insane thought process that leads to regret, and commit oneself to improving one's decision-making practices. I don't expect to regret doing SRT+ADT, not because I expect the outcome to vindicate my decision -- it can't and won't -- but because I know I did the best I could to gather and evaluate information under the circumstances of my life the past few weeks.
Over and out.
Posted 3/12/2018 10:53 AM (GMT 0)

Saipan Paradise said...

Which is why the key move is not to avoid regret itself but to reject the rhetoric of regret, the insane thought process that leads to regret, and commit oneself to improving one's decision-making practices. I don't expect to regret doing SRT+ADT, not because I expect the outcome to vindicate my decision -- it can't and won't -- but because I know I did the best I could to gather and evaluate information under the circumstances of my life the past few weeks.
Over and out.

Exactly. This actually goes back to one of the original comments in this thread: that men who did their research, who asked questions, who allowed themselves to make their decision based on an analysis of the choices available to them have fewer regrets than those who scheduled immediate surgery the day of diagnosis.

There is no room for regret when we can say, "I did the best I could at the time". Regret comes for those who realize too late that they could have (should have?) done more. Shoulda Coulda Woulda is a dangerous path to go down.
Posted 3/12/2018 11:08 AM (GMT 0)
Regret, for me, is mainly about expectations. I did a great deal of research, read many books, talked with many docs and fellow PC men, and made a choice based on a set of expectations. For me, expectations and hope are cousins but not the same. I hope everything goes perfectly and I expect to be cured! I also expected to have an easy time in the procedure and rapid return to normality.

So far my expectations have been met. I just thought yesterday that all my bodily functions are as good or better than prior to knowing I had PC. My treatments went smoothly and I had mild discomfort for a few days after each of the two treatments.

I do not know about the cure and won't for some time. First post-op PSA is next month. In setting my expectations, I believed that all the treatments had an equal cure rate. If I need more treatments I believe that would have been the case for any of the initial treatments. Sure I will be bummed if I need more treatments but I believe I will not regret my choice.

I think all men who have PC should clearly lay out their expectations and their hopes. I believe, unless the expectations are false, that one could avoid regret.

I also do wonder occasionally if I made the right choice but quickly remember the effort I put in and the wonder disappears. I suspect the real wonder is have I been cured?
Posted 3/12/2018 3:58 PM (GMT 0)

Saipan Paradise said...
....the key move is not to avoid regret itself but to reject the rhetoric of regret, the insane thought process that leads to regret, and commit oneself to improving one's decision-making practices..

You nailed it again, SP...and one day soon, you should be able to nail something more tangible. yeah

Regret and worry about things out of one's control....what a waste nono
Posted 3/12/2018 4:06 PM (GMT 0)

Subdenis said...

I also do wonder occasionally if I made the right choice.....the real wonder is have I been cured?

Like all of us, with the data you had at the time, your choice was correct. Given all the research you say you've done, you must know that even with the very mild case you have, there is no 'cure', only a hopefully lifetime 'remission'. Just stay vigilant.
Posted 3/12/2018 5:50 PM (GMT 0)

garyi said...

Subdenis said...

I also do wonder occasionally if I made the right choice.....the real wonder is have I been cured?

Like all of us, with the data you had at the time, your choice was correct. Given all the research you say you've done, you must know that even with the very mild case you have, there is no 'cure', only a hopefully lifetime 'remission'. Just stay vigilant.



Incredibly insightful words from 50 years ago and true today from Dr Willet Whitmore as he was describing that PC survival has less to do with treatment than with the biology of the individual tumor:
    "Is cure possible? Is cure necessary? Is cure possible only when it is not necessary?"
Posted 3/12/2018 6:06 PM (GMT 0)
That would be that same Dr. Whitmore who died of prostate cancer, some twenty years ago.

If so, he would have appreciated a 'cure', or at least a longer 'remission'.
Posted 3/12/2018 6:10 PM (GMT 0)

garyi said...
That would be that same Dr. Whitmore who died of prostate cancer, some twenty years ago.


Yes, absolutely. He was one of the most brilliant minds in PC, ever. He was Chairman of the Urology Service at the Memorial Sloan-Kettering Cancer Center for more than 30 years. He helped define the subspecialty of urologic oncology (and became known as the "father of modern urologic oncology"), and through his fellowship program, trained many individuals who became leaders in the field. In addition to being known widely as an innovative thinker, he was also recognized as an individual with a clear understanding and sympathy for patients facing treatment for urologic cancer.
Posted 3/12/2018 6:17 PM (GMT 0)

NKinney said...

garyi said...
That would be that same Dr. Whitmore who died of prostate cancer, some twenty years ago.

.....In addition to being known widely as an innovative thinker, he was also recognized as an individual with a clear understanding and sympathy for patients facing treatment for urologic cancer.

We could use a lot more like him. Having prostate cancer will make a physician much more empathetic toward his patients.
Posted 3/12/2018 6:28 PM (GMT 0)

garyi said...

NKinney said...

garyi said...
That would be that same Dr. Whitmore who died of prostate cancer, some twenty years ago.

.....In addition to being known widely as an innovative thinker, he was also recognized as an individual with a clear understanding and sympathy for patients facing treatment for urologic cancer.

We could use a lot more like him. Having prostate cancer will make a physician much more empathetic toward his patients.



Indeed. His comments show Dr Whitmore's broad understanding of the need to balance treatment with the side-effects of said treatment. He was witnessing, in his day, the increasing use of RP for PC and recognized that many men were being subjected to the morbidity of surgery without necessarily deriving any benefit. In today's parlance, "quality of life" has become a primary study end-point and has evolved in a separate discipline. Dr Whitmore was one of the first to insist that quality of life always be considered in treatment decisions.
Posted 3/12/2018 6:33 PM (GMT 0)

NKinney said...
.....Dr Whitmore was one of the first to insist that quality of life always be considered in treatment decisions.

Amen to that.

Based on my experiences, and what I read on the forum, far too many physicians only pay lip service to our quality of life. I will not condone another RO or MO who tells me they are "conservative" and want the "throw the kitchen sink" at me...or rather my condition.

Did you get treatment from Dr. Whitmore, MK? We know precious little about your background.
Posted 3/12/2018 6:53 PM (GMT 0)

garyi said...

NKinney said...
.....Dr Whitmore was one of the first to insist that quality of life always be considered in treatment decisions.

Amen to that.

Based on my experiences, and what I read on the forum, far too many physicians only pay lip service to our quality of life. I will not condone another RO or MO who tells me they are "conservative" and want the "throw the kitchen sink" at me...or rather my condition.

Did you get treatment from Dr. Whitmore, MK? We know precious little about your background.


No. Dr Whitmore died more than 20 years ago. I was diagnosed and treated for PC—I had surgery—about 9 years ago.

Obit
Posted 3/12/2018 7:02 PM (GMT 0)
Quite reveling and inspirational...thanks.
Posted 3/12/2018 7:43 PM (GMT 0)
I see no point in having regrets. You can’t change the past and it’s not even of any value to those coming after us.

“Regrets, I've had a few
But then again, too few to mention
I did what I had to do
And saw it through without exemption
I planned each charted course
Each careful step along the byway
And more, much more than this
I did it my way”

Says it all really.
Posted 3/12/2018 8:00 PM (GMT 0)

bdubs60647 said...

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



I listened to the TED Talk you provided (link HERE).

First of all, I love TED Talks...there's just too many, so thanks for providing an interesting one.

The social science tests he demonstrated were fascinating.

Interesting notion: "psychological immunity"

thanks
Posted 3/12/2018 9:18 PM (GMT 0)

Chask said...
I see no point in having regrets. You can’t change the past and it’s not even of any value to those coming after us.


Chask, you said in two short sentences what I was trying to say in two long-winded paragraphs. Exactly.
Posted 3/14/2018 12:22 PM (GMT 0)

Pratoman said...
I had surgery. No material side effects, everything works, in short, no negative effect at all on my quality of life.
With that said, I sometimes wonder, would I have been better served with SBRT? I looked at it, met with 2 RO's before making my final decision. At that time, there was 7 year records on it. I wasn't confident that it was enough if a track record. Also, the RO I met with at MSKCC told me that he's not doing SBRT for prostate cancer for that reason, they wanted more data, although he said it looked very good so far, just not enough.

So I chose surgery. I have to admit I sometimes wonder if I would not have a rising PSA today if I had chosen SBRT and not an invasive procedure that could potentially have moved cancer cells around, maybe released them into the bloodstream of something.

You made a decision at that point in time. Nobody knows if it was the right decision and nobody every will. If you had SBRT, you could be one of the few who is suffering terrible rectal bleeding, which is far worse than being one of the few with no surgery SEs. That's from the SE point. As for the invasive procedure that moved your cancer cells around. Maybe it was the biopsy. After all, a miniscule number of biopsies actually spread cancer and you were extremely unlucky. But, if the PSA continues to rise, its more likely it already got out before surgery, rather than during.
Posted 3/14/2018 2:10 PM (GMT 0)

WeightLoss said...
.....But, if the PSA continues to rise, its more likely it already got out before surgery, rather than during.

LOL

If you haven't noticed, Prato overthinks things, like everything.

The mere suggestion that some of those nasty little cancer cells have escaped his barn, will have his head exploding. shocked

I sure hope his next PSA check doesn't go up....for everybody's piece of mind. wink
Posted 3/14/2018 8:01 PM (GMT 0)

WeightLoss said...

Pratoman said...
I had surgery. No material side effects, everything works, in short, no negative effect at all on my quality of life.
With that said, I sometimes wonder, would I have been better served with SBRT? I looked at it, met with 2 RO's before making my final decision. At that time, there was 7 year records on it. I wasn't confident that it was enough if a track record. Also, the RO I met with at MSKCC told me that he's not doing SBRT for prostate cancer for that reason, they wanted more data, although he said it looked very good so far, just not enough.

So I chose surgery. I have to admit I sometimes wonder if I would not have a rising PSA today if I had chosen SBRT and not an invasive procedure that could potentially have moved cancer cells around, maybe released them into the bloodstream of something.

You made a decision at that point in time. Nobody knows if it was the right decision and nobody every will. If you had SBRT, you could be one of the few who is suffering terrible rectal bleeding, which is far worse than being one of the few with no surgery SEs. That's from the SE point. As for the invasive procedure that moved your cancer cells around. Maybe it was the biopsy. After all, a miniscule number of biopsies actually spread cancer and you were extremely unlucky. But, if the PSA continues to rise, its more likely it already got out before surgery, rather than during.

Good points WL.

FWIW, I SHould clarify, I would NOT say I have treatment regret. By any stretch. I do believe, and have always believed, that I made 1. The best decision based on the information available at the time, and 2. The best decision for myself.
So no regrets, just curiosity. Not second guessing myself,
Posted 3/14/2018 8:03 PM (GMT 0)

garyi said...

WeightLoss said...
.....But, if the PSA continues to rise, its more likely it already got out before surgery, rather than during.

LOL

If you haven't noticed, Prato overthinks things, like everything.

The mere suggestion that some of those nasty little cancer cells have escaped his barn, will have his head exploding. shocked

I sure hope his next PSA check doesn't go up....for everybody's piece of mind. wink

🖕.
JUST KIDDING GARY
Posted 3/14/2018 8:20 PM (GMT 0)

Pratoman said...

JUST KIDDING GARY

Thank the Lord smile
Posted 3/16/2018 6:45 PM (GMT 0)
Regret...

I just finished reading my Prostate binder again. It contains my Op report, Pre and Post-operative pathology. All my PSA’s, all of my office visit Co-Pay receipts, lots of notes in pencil (yes I’m a pencil guy)
Following an elevated PSA finding I had my first office visit with the urologist on 09/10/2009. Biopsy completed on 09/24/2009 and had surgery on 11/2/2009.
For some reason I always tell people that I was 52 when I had surgery but I was actually 51.
With 10 of 12 positive cores and the right lateral base involving 75% of the core, I was able to make the decision to have surgery while I was on the phone with the urologist as he was reading the pathology report. Because my father died of advanced prostate cancer I had already done a huge amount of research on the topic. I had an out of pocket MRI. I talked with 2 radiologist. I had several visits with a good friend of mine that is a pathologist. about an hour after that phone call I had the surgery scheduled. I would have done it the next day but he insisted on a period of healing from the biopsy before he would do the surgery.
The following 30 days were a killer. I spent extra time on the bike, running, stacking in extra wood and I worked extra hours so that I could be ahead when I took the week off for surgery. I was in the best shape of my adult life as they wheeled me into the operating room.
Surgery was a huge non-event. I never took a pain shot or pain pill. My recovery was fast and I was back to normal in 3 weeks. I was doing so well that it was difficult for me to follow the instructions and typical restrictions that were given to me. With my surgeons consent I took my catheter out on the 12th (I didn’t want to drive for 90 minutes one way to have it done in the office) and was back at work on the 16th. After 30 days you could not have guessed that I had surgery. One oddity is that I was never able to get back into running. At the time I was doing approximately 20 miles a week. Nothing drastic but I really enjoyed it. For reasons that I can’t explain I just couldn’t get back into it and I really tried for several weeks. Back to the bike was a natural until I got whacked by a very nice lady in a ford explorer.
So 9 years out I’m still seeing < on my uPSA result. I have some stress incontinence (very little but it is what it is), I don’t need a pad or anything but I do need to be careful. My day job is at a desk but at home (on the farm) I’m very active and do all kinds of work. As an example I split wood for 2 hours last night. Another oddity is that I have lost interest in sex. I don’t have ED issues but post-surgical sex has never been “normal”, it never will be. It actually sucks.
Would I do surgery over again? With the technology as it were in the day, Yes… However given some of the wonderful advancements in radiation therapy that are available today I believe the conversation on the phone with the urologist would have ended with thanks for all you have done, I’m going to schedule my radiation therapy now.

Hero
✚ New Topic ✚ Reply
123

HealingWell

Connect With Us
© 1997-2024 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.