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Decisional regrets

MK1965
Posts: 176
Joined: Jun 2016

Here is one of the best reviews on topic of “decisional regret on prostate treatment by prominent doc.

 

https://www.afr.com/life-and-luxury/health-and-wellness/regret-after-surgery-for-prostate-cancer-is-widely-understated-20160502-gojrg3

 

MK

hewhositsoncushions
Posts: 274
Joined: Mar 2017

And I am sure you will find there are papers indicating regret for RT is greater than thought.

We all regret having cancer and having had treatment.

We go through the grief cycle just like when we lose someone. The thing to do is get through anger, denial, bargaining etc. and get to acceptance. There is no other healthy outcome.

Damp
Posts: 17
Joined: Sep 2017

Is there anyway to read this article without becoming a subscriber?

MK1965
Posts: 176
Joined: Jun 2016

Google “ radical prostatectomy regrets” and scroll down 4th or5th page with date May 3, 2016 . - Australian financial review

MK

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3292
Joined: May 2012

ANY TOPIC whatsoever will produce millions of Google results, saying anything a person wishes to find.

I just Googled "Nose Diggin," and got 24,600,000 returns:  over 24 million.

"Toilet paper lawsuits" brought 1,800,000 returns.

VascodaGama's picture
VascodaGama
Posts: 3007
Joined: Nov 2010

Several guys have reported to be satisfied with the treatment they have chosen. However, many others report regret once the side effects kick in.

The above article is a sort of summary done on a series of studies investigating the discontent of patients and treatment failure, comparing it with the initial prognosis presented by a treating doctor and the decision by the patient;
https://ascopubs.org/doi/10.1200/JCO.2016.70.6317
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5501361/

In her article, Bill Margo mainly discusses surgery but the truth is that all type of therapies involves risks and side effects that will deteriorate the quality of life of the patient and such requires us to reject all treatments or to learn how to accept the occurrence, even in a regretful mood.

My surgery gave me survival and a series of side effects for life (exactly 19 years ago, August 15, 2000). Salvage Radiation added some more. The following Hormonal treatment, ADT, still added some other permanent unnoticed effects, no matter how one quantifies them. None of these treatments managed to get rid of the cancer and the cancer did not cause any of those side effects. I wonder if I would be alive today if I had rejected treatment from the beginning.

I would say that I have chosen the best at each decisional occasion even if such had not given me the smile I was looking for.

Best

VG

 

Clevelandguy
Posts: 455
Joined: Jun 2015

Again, well said Vasco, as I have always said all treatment protocols have side effects.  You just have to decide for your set of factors what is the best course of treatment for you and then accept the results.  Happy are the few that come through this journey with no side effects.

Dave 3+4

Josephg
Posts: 158
Joined: Jan 2013

I'm aligned with Vasco and Cleveland.  Having been through surgery, radiation, and hormones, the Bandit is still alive and well within me.  I have a growing list of permanent side effects resulting from the treatments, which have all had an impact, to some extent, on my quality of life.

However.....  At each stage of my treatments, from the initial surgery to future palliative treatments, I made and will make my own decisions, based upon the information that was available to me at the time.  Did I make the 'right' decisions each step along the journey?  Who knows....  What I do know, is that looking back and second guessing myself won't change anything from the past or present.  As such, I only focus on the present and future, and I will continue to make decisions, based on the information that is available at each decision point.

Last and most important to me.....  I am convinced in my own mind (right or wrong) that doing nothing from the time that I was initially diagnosed with PCa until now would have been the wrong decision.  I firmly believe that if I had done nothing regarding treatment over the past 8 years since my initial PCa diagnosis, my current condition and quality of life resulting from doing nothing, would have been far worse today and in the future, than it currently is today resulting from the treatments that I have received.  While my current quality of life has been reduced somewhat by the cummulative impact of the treatments that I have received, my remaining quality of life is way more than enough for me to keep moving forward in life, day by day, finding and enjoying life's values and experiences that are still available to me.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3292
Joined: May 2012

I have the rare perspective of having faced multiple cancers.  All differ in options and results (Pca, advanced lymphoma, scare of lung cancer, still monitored).  PCa is unique in HAVING treatment options; most cancers have no options. 

For advanced Hodgkins I had the choice of multiple chemos at once, or dying.  No other choices.  I lost my sense of taste, feeling in my hands and feet (neuropathy), chemo fog, skin issues, and permanent lung fibrosis.  But I am thankful to be lymophomia-free today.  If the lung  tests positive at a later date, the option is surgical removal, or radiation, IF they can be performed.....  I have followed friends to death with colorectal, brain, liver, and other cancers.  "Choices" was never a problem they had; they never regretted choosing wrongly, because there never were options.

PCa is among the most beatable, and the most long-term beatable, cancers that exists.  While we are certainly not "lucky" to survive with side-effects, or the ability to lament choosing a treatment wrongly, the tens of thousands who die with other cancers annually wish that they had our 'problem.'

Steve1961
Posts: 242
Joined: Dec 2017

to Me having treatment choices messed me up bad ..the waiting fir dr appts .waiting weeks and weeks .hearimg one opinion after anotherv....I much rather would have had one option surgery only and then radiation if needed ..it’s my own fault I did radiation over surgery and it’s been a nightmare fir me ...all because bottom line was I never had any kind of surgery ever and it scared me To death and having too much time and options and drs  that were not very honest screwed me ..I may not die from pc but the anxiety it has caused me will most likely give me a heart attack or stroke ...that’s how bad it is and yes I am seeking help ...but no shrink or pill is going to make me think I choose the right treatment after reading one bad thing after another and another and another bout the cancer I had and how bad radiation for PC is 

hewhositsoncushions
Posts: 274
Joined: Mar 2017

Here we have two people both regretting their treatment and wishing they had the other ones in the same thread.

To me this proves the point that it is not the treatment choice per se it is the statistical chance of poor outcomes playing out.

Both treatments have a probability curve for outcomes and you guys are sadly at the wrong end.

Confirmation bias comes in to play.

To quote Les Brown - it doesn’t matter what happened - what are you going to do about it?

lighterwood67's picture
lighterwood67
Posts: 207
Joined: Feb 2018

Well, I guess I do have a regret.  I regret being diagnosed with prostate cancer.  So where do I go.  Nuke (radiation), gut (surgery, RP) or watchful eye (wait and see).  At this point, I do not regret having the surgery.  Do I have side effects, yes.  Do I wish there were no side effects, yes.  I need to stay focused on, in this order, cancer (PSA undetectable), continence (fully continent), ED (still under construction). When it comes to physically altering your body (surgery or radiation), there will be side effects.  To me regrets or should have, could have, would have are mentally challenging and have no added value in your treatment of PC.  But what do I know.  I am an optimist.  If you give me a box of horse manure, I would look at you and say I know there is a pony in there somewhere.

hewhositsoncushions
Posts: 274
Joined: Mar 2017

https://youtu.be/P44vhvPGO6Y?t=16

I've been in the doldrums for a long time - drinking, eating and whatnot. Had an abysmal week at work where my bosses machiavellian games made me look hard at some of my own inadequacies (in dealing with politics and shifty organisations) and for the first time since my RT I went for a 2.5 K run (well a walk / run). Little steps. You cannot dig yourself out of the doldrums in one go but you can no manner your starting point.

https://www.deporlovers.com/wp-content/uploads/2015/05/spartan-10.jpg

If he can do it so can we.

Steve1961
Posts: 242
Joined: Dec 2017

 Really if I could do it again I would run to the hospital for surgery. It seems like all I hear on this board is men bitching about ED.  You guys are all NED and are fully continent  and  some have problem with ED or maybe a smaller penis oh boo-hoo. I know you’re at all saying sure I say that now. Radiation treatment effed me up every which Way but sideways. I have to take Flomax just to P I have not had a decent BOwen movement in a year.  I don’t know what it did to my colon rectum or bladder. My PSA level is only down to 3.6 it may never reach NED. I put a poison in me to kill a poison that I don’t even know will work. This poison could actually create more cancers. Radiation should only be used  for prostrate cancer as a last resort. Last resort meaning surgery failure or if you’re too old or not healthy enough for surgery.  It should be a mandatory practice that every urologist must perform an MRI before any biopsy. Like what was said before in the tread most cancers you only have one option and I wish to God it was the same for prostrate cancer because then I would’ve done the surgery.

 I can go on  about this forum people tellIng me take your time do your homework get multiple opinions bullshit. The first radiologist I saw Recommended that I do surgery the first surgeon I saw Stanford also recommended surgery plan a and Plan B radition but I waited to see this third one waited for months and during those months I read about nightmares about surgery I heard about nightmares about surgery with me being a fatalist  is scared me ultimately chickened out that’s right I chickened out.

Surgery you do it once it’s done it’s done. You go home deal with the catheter for one week find out exactly what’s going on with your cancer and then in five weeks you know you are NED. Radiation five days a week for five weeks every day seeing people that are very sick people that are you dying young kids and they’re all using the same table and radiation as you. After the third treatment I am on my knees I couldn’t urinate. Dr. tells me to take Flomax second week of treatment diarrhea would not stop. And then after Breaky therapy  bleeding out my butt hole for a week and then having rectal leakage and not been able to control my bowels. And then I hear man bitching about ED in the smaller penis big deal. I screwed up I hope to God and I pray every night that it will turn out good now I get to go have a study done to see why am not urinating right it will probably have to have surgery. Then And then in a few weeks I get a colonoscopy to find out how much damage was done by radiation oh joy man sure wish all I had to worry about was ED what a bunch of whinears you guys are here. Unless you are sex fiends  or maybe your better halves need it bad  and you are afraid they may leave then  an erection I guess would mean more than what I am going thrun

akot of men here act and talk like they are drs..granted a few are scientists and I think that when a newbe asks for opinions ...radition should absolutely never ever even be mentioned as primary Treatment for PC if it is still contained ...NEVER ....and surgeons as well should never mention radiation as  primary treatment either .

hewhositsoncushions
Posts: 274
Joined: Mar 2017

Wrong. We are not “all NED with no side effects“. My mental health has taken a hammering, my family had gone through hell, I’ve put on so much weight my vagus nerve is playing up and my confidence is in my boots. I may still relapse. I’ve decided to climb out of the pit though, one step at a time. You can too if you accept what has happened and stop playing the victim card.

I will say it again. Whats done is done. The only healthy thing to do is accept the cards you have been dealt and move on. Soldiers have had their genitalia blown off by IEDs and still made a life. People are born with badly  deformed bodies and become millionaires. Look at Nick Vujivik. My friend faced a painful death from lymphoma and she still managed it with courage and dignity. It’s not easy but it’s possible.

You can too but you just don’t know it. If you are going to remain angry, make use of that anger to drive improvements not beat yourself up or hate the world. Every day you feel like this that bloody disease is winning. Have a day where you feel good and look forward and you’ve beaten it that day. You won’t regret it.

 

Steve1961
Posts: 242
Joined: Dec 2017

sorry  there are men on this form that are NED  like the fella who started the thread  and are upset about ED that’s what I meant. In my eyes I skipped a vital step that would have been removing the prostrate because I could very well have been NED right now and also not have urinary and bowel issues . maybe I would’ve been NED for a few years or for good even two years I may well be cancer free right now I hope so it’s just in my eyes it is criminal tomoffer radiation as primary treatment in my eyes it should be plan A surgery plan B  radiation and plan c hormone .

MK1965
Posts: 176
Joined: Jun 2016

Steve,

I did not have radiation but ever after RP , I also have problems with my colon which I never had before RP.

Never even mentioned this problem here. I am having second colonoscopy after RP this coming Friday , and all of that in less then 3 years.

This-should not be about personal bad outcomes, but in general, as high numbers of surgery patients with heavy regrets.

Once again, I will repeat: I wish I have chosen radiation for my primary treatment. I am positive, no radiation would make so much damage in so short time As did RP which destroyed me completely as a man. As for cancer control, radiation would have same effect as surgery for my 4+3 which after surgery was downgraded to 3+4, bilateral and multi focal Ca.

And such bad mistake could be easily avoided if I did not listen to my wife and my urologist.

MK

Steve1961
Posts: 242
Joined: Dec 2017

https://www.ucsfhealth.org/education/radiation_therapy_for_prostate_cancer/

so sorry about bowel problem .bowel problems are not even listed in side effects for surgery .it happens less than 1 % ...if you look st the link you will see why I am so upset ..I was warned Only about half of the side effects .. well I guess you are the only one who regrets surgery on this board and I am the only who not only did radiation but regrets it as well ..I should have listened to my wife and radiologist who said I should due surgery also David Lee who tried to tell me of his friends that did radiation and how bad it messed them up . I can’t believe a person wouldn’t be thrilled knowing they are NED .i would give up my man hood and more to know I am NED 

Grinder
Posts: 440
Joined: Mar 2017

So you are having a colonoscopy for colorectal cancer or other malady? And you think a radical prostatectomy is the cause of it? How is that? I can see no connection there. Who told you your colonoscopy is necessary because of the RP? Not that I doubt it, but I don't understand how removal of the Prostate by RP could affect the colon and I wonder how exactly that could happen with a competent surgeon.

If a colon gets perforated during RP, I would say it is the gross incompetence of a surgeon at fault, not the procedure. 

Steve1961 I am truly sorry for your condition. Prostatitis and BPH and PC was making my life miserable and kept shutting down my plumbing on both sides along with a UTI making urination a misery even if I could squeeze out a bit with the aid of Flomax.

But, after a year of that misery, RP ended my ordeal.

I feel for you dude ... for you to go through that ad infinitum is a rough business. I wish there was something I could do... But I will pray for you. That's all I can offer.

Hang in there.

Steve1961
Posts: 242
Joined: Dec 2017

I guess my biggest fear is not knowing ..

Georges Calvez
Posts: 271
Joined: Sep 2018

Hi there,

Not knowing is part of the deal, I know that with my pathology my cancer will probably return at some time in the future.
I cannot say when, it could be months or years, when it returns it is likely to proceed slowly so it will take years to kill me and something else could get me first.
When I was diagnosed I was a happy, sexually active naturist living in France and looking forward to a third career as a refrigeration engineer.
It has pretty much destroyed all that apart from some of my happiness,  living in France and my marriage and it has not finished yet.

Best wishes,

Georges

Steve1961
Posts: 242
Joined: Dec 2017

I mean for all I know the PC could be gone ...I mean the cure rates they say are about the same with either treatment .for all I know it may be gone and never come back . 

 

 

Clevelandguy
Posts: 455
Joined: Jun 2015

Hi All,

In my case even though I have had 4 yrs. of undetectable readings every year I am really concerned when I get my PSA report.  But the way I see it, I will just have to deal with it if it does return so why waist my time worrying.  It won’t do any good, won’t change the next treatment plan, won’t  prolong my life.  If and when it returns I will deal with it at that time.  At 67 years of age I want to live as much as I can over the next how many years I have left.  I don’t worry about getting hit by a truck, jealous lover,typhoons, earhtquakes, ect.  I could never have cancer again but get hit by a freak tree/car accident during a thunderstorm.  I just put it on the back burner and only really worry before each PSA test.  I try very hard not to let my cancer consume my life, it is a very mentally destructive way to live in my opinion.  Life is really too short at any age to dwell on things you have very little control over.

Dave 3+4

lighterwood67's picture
lighterwood67
Posts: 207
Joined: Feb 2018

My next PSA test comes up in September.  I do not even remember where I  put the order request that I got from the surgeon to get the PSA test done.  I usually find it a day or two before the test is due.  So far after my RARP 3/18, mine has been undetectable.  This is not something I dwell on.  I prefer to dwell on where is my camper going next (just got back from the beach).  If the test slaps me in the face, it won't be the first time.  PC slapped us in the face, right?  Just have to deal with it.  Now, quality of life is my deciding tool as far as treatment goes.

MK1965
Posts: 176
Joined: Jun 2016

Whole point of this tread is that **** ( regrets) happens more often with surgery (RP) then with any other treatment modality.

Every treatment modality has some bad outcomes and dissatisfied patients, but RP has way more then any other treatment.

Some because of high expectations, some because of misinformation or false promises by docs, and some just ment to happen, and for some, RP is just not good choice for some people who want to live and enjoy life like nature intended.

Almost 3 years later, I can pinpoint where I made mistake: I listened to my wife and her favorite doc and accepted surgery despite that not being my choice. My wife rationale alwayes was that she wanted doc she knew well even from time of his residency training to operate on me because she met lots of patients and their wives of his with very satisfied outcome. It did not happen in my case. 

MK

Clevelandguy
Posts: 455
Joined: Jun 2015

Hi, 

I don’t agree MK, I looked over both studies Vasco sited and it was very close for satisfaction of surgery vs radiation. Bowel functions problems were less with surgery and more with radiation which makes sense to me.  Again sexual problems were more with surgery(more damage done cutting nerves) and less with radiation which again makes sense.  In fact 1% were more dissatisfied with radiation vs surgery(bottom of table 3).  The qty. of surgery vs radiation(696 vs 196) was kind of scewed in my opinion.  Would have been better stats wise if the two sample populations were closer to equal.  If a person has surgery or radiation I doubt either method would give you results as if nothing was done(”life like nature intended”).  If there was a treatment with no side effects I surely would have picked it.  What ever treament course is taken, learn to live with the results and move on with life.  Coulda,shoulda,woulda, can be very destructive mentally and is not very productive to a physical recovery in my humble opinion.

Dave 3+4

lighterwood67's picture
lighterwood67
Posts: 207
Joined: Feb 2018

Gut (surgery) or nuke (radiation), there is no really telling how your body (test tube) is going to react.  Good outcomes, bad outcomes, we have not hit the bullseye on the best treatment for PC. I hate it for the folks with the bad outcomes.  I hope that they get better.  It makes me feel like I just got lucky.  Well, those decisions are always the hardest ones.

hewhositsoncushions
Posts: 274
Joined: Mar 2017

NO THEY DO NOT.

You are suffering confirmation bias and a refusal to leave your grief / loss cycle.

Staying in this mode is unhealthy and fruitless and in the long term bad for you.

Do you think Douglas Bader gave up when he lost his legs and was told he could not fly? Nope. He signed up to fly active service and did so until he got shot down and spent the rest of the war in Colditz.

Beethoven? Lost his hearing. Did he give up? Nope. Used a stick to listen to the piano Whilst he composed.

Stephen Hawking? Need I say anything?

Billy Monger? Teenage lad lost both his legs in car crash. Got back behind the wheel and now commentates. Nikki Lauda? Frank Williams? Nuff said.

We can either be on the pity potty or off it. It is a choice. They chose not to sit on it. You have that choice and you can make if you let yourself. I believe you can. In fact I know you can. Every one of us has it in us to transcend our challenges. Believe in yourself and you won’t look back.

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