Decisional regrets

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  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    MK1965 said:

    Google

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

    MK

    Anything.....

    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.

  • Clevelandguy
    Clevelandguy Member Posts: 980 Member

    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
    lighterwood67 Member Posts: 374 Member

    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

    September

    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
    MK1965 Member Posts: 233 Member
    Point of this tread

    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
    Clevelandguy Member Posts: 980 Member
    Study findings?

    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
    lighterwood67 Member Posts: 374 Member
    Test Tube

    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
    hewhositsoncushions Member Posts: 411 Member
    edited August 2019 #28
    NO THEY DO NOT.

    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.

  • RonJT
    RonJT Member Posts: 39 Member
    Steve1961 said:

    Side effects

     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 ****. 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 .

    Radiation therapy

    I disagree re: radiation.  I am continent and active at age 73 with minimal side effects.  All Rx has the potential for bad outcomes but I am not the only one who has had a good outcome after choosing radiation.  

    Age 68 at diagnosis 

    2/2009 PSA 4.3 Biopsy negative

    2009-2016 PSA climbed from 4 to 6

    DRE all negative

    2/2016 PSA 7.5

    Ultrasound and DRE indicate nodule

    Biopsy with 6 of 12 cores pos

    Two 4+3 Four 3+3

    5/11/16 Gold Markers Placed

    5/5/2016 on Lupron and Casodex

    6/8/16 Lupron Dose #2

    7/2016 IMRT started 25 fractions 45Gy total

    8/4/16 Flomax  0.4mg  started

    Cyberknife boost 8/9/16 2 fractions 19 Gy total

    Weight down to 128

    9/1/16 Last Dose of Casodex

    11/18/16 Hot flashes end; getting up 1-2 x per noc

    12/6/16   PSA 0.1  T-Level 372

    3/6/17     PSA 0.2 T-level 288

    7/10/17   PSA 0.2 T-level 308  

    11/16/17 PSA 0.2 T-level 311

    6/13/18   PSA 0.2  T-level 202

    9/21/18 psa <0.1 T-level 225

     5/28/19 PSA <.01 t-level 192

    10/17/19 PSA <0.1 t-level 267

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    Treatment outcomes in France
    Hi there,

    Here is a large scale study of outcomes in men treated for prostate cancer in France, both EBRT and prostatectomy have negative outcomes in terms of erectile dysfunction and urinary incontinence with prostatectomy doing far worse than radiation, there are good reasons sketched out in the paper to believe that the French results are in line with those in other similar European countries, USA, Canada, Australia, etc.
    The take home message is that prostate cancer has a very good two year survival rate but it has a big QoL impact.
    https://bmcurol.biomedcentral.com/articles/10.1186/1471-2490-14-48

    Best wishes,

    Georges
  • lighterwood67
    lighterwood67 Member Posts: 374 Member
    Cognitive dissonance

    Cognitive dissonance

     From the article that MK provided the link:  "Cognitive dissonance, which is the intolerable mental discomfort of holding two contradictory ideas in the mind at the same time.   Men have had an irreversible operation that impacts their masculinity; they know they are suffering the consequences but they answer questionnaires in a way that ignores the suffering."  One would think that we would always base the treatment decision as, I need to choose a curative treatment, with minimal side effects.  Obviously from a side effects stand point, I would say that the surgery would have the most.  Due to the fact that the gland is physically removed; reconstruction of urethra; and sometimes lymph nodes removed.  In some cases surgery is not even an option.  So we find ourselves back to our decicision.  I based mine on what the surgeons and radiologist onocologist said.  I went with the surgery.  Is everything perfect and the way it has always been, no, and it will never be the same.  So, I make the best of  the decision that I made and move on.  Enjoyed reading MK's article.  I hope I read the right one.

  • Steve1961
    Steve1961 Member Posts: 466 Member

    Cognitive dissonance

    Cognitive dissonance

     From the article that MK provided the link:  "Cognitive dissonance, which is the intolerable mental discomfort of holding two contradictory ideas in the mind at the same time.   Men have had an irreversible operation that impacts their masculinity; they know they are suffering the consequences but they answer questionnaires in a way that ignores the suffering."  One would think that we would always base the treatment decision as, I need to choose a curative treatment, with minimal side effects.  Obviously from a side effects stand point, I would say that the surgery would have the most.  Due to the fact that the gland is physically removed; reconstruction of urethra; and sometimes lymph nodes removed.  In some cases surgery is not even an option.  So we find ourselves back to our decicision.  I based mine on what the surgeons and radiologist onocologist said.  I went with the surgery.  Is everything perfect and the way it has always been, no, and it will never be the same.  So, I make the best of  the decision that I made and move on.  Enjoyed reading MK's article.  I hope I read the right one.

    Side effects

    And nobody talks about the biggest side effect anxiety. Everybody that post out here as anxiety whether  you want to believe it or not because if you did not have anxiety you wouldn’t be posting the reason you’re posting it because you’re thinking about it all the time like I think about it .anxiety is the biggest side effect and unfortunately that’s the one I have. It is only natural I know three people that have it unfortunately when I run into them they always have to ask how we doing i ask  how they’re doing . 2 guys want to talk about it and that’s all last thing I want to do but it’s damn scary and if you say it’s not you’re lying . I saw the guy down the street the other day unfortunately his has  spread and he is on hormones he is 74 years old they told him they gave him 5 to 8 years he asked me where I’ve been hiding I wanted to say I’ve been hiding from you I hate to say that but I don’t like to talk to the person that’s all he wants to talk about and it frightens me it really really ftightens me Yep anxiety that is the biggest scariest one of all ..

  • Clevelandguy
    Clevelandguy Member Posts: 980 Member
    Use your time wisely

    Hi,

    I hope your friend uses his time left wisely and does not let his disease consume him and his family. Nobody knows when their time is up due to disease or an auto wreck, industrial accident, ect.  If you dwell on it constantly it will eat you up mentally and physically. Take charge of the life you have left in this world and do something positive. If you let it, anxiety will rule your life and make it miserable.

    I try to throw my brush with cancer as far back in my memory a I can so that I can live the life I want.  The neighbor behind me just found out he has Pancreatic cancer and his future is very clouded as he moves forward. It kinda puts my cancer issues in a background mode compared to his.  Might do both you and your friend a world of good to sit down and have a talk about your "situations", sometimes it's better to talk about it than hold it all inside.

     

    Dave 3+4

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member

    Hi Steve,

    I am here to talk about my experiences with prostate cancer and the treatment that I have received, hopefully being able to advise men that are about to undergo the same treatment or are thinking about their choices.
    I have some residual side effects from the treatment but they are less and hopefully as time goes on I will recover to a greater extent.
    I hope that I am cured and that is a possibility but there are other possibilities that I have listed in the thread where I talk about my experiences.
    I am not here because I am anxious. I am aware that the cancer could return, just as I am aware that my chance of dying of cardiovacular disease is enhanced by the treatment that I have received.
    However I have made the decision to put that aside and get on with things. My wife is not very well so my first priority is looking after her and making sure that we have the best life possible together.

    Pip, pip

    Georges

  • Josephg
    Josephg Member Posts: 372 Member

    I agree with Georges.  I did not join and contribute to this Forum because I was, or am, anxious.  Not at all.

    I joined, first, to learn about fellow PCa patients' experiences, as I wanted to gain knowledge of their perspectives and experiences on PCa, related to diagnostics and recommendations, grading parameters, treatment options, and resulting side effects, directly from the patients themselves, after I initially received this perspective from my medical providers.  Having the knowledge of these multiple perspectives and experiences from actual PCa patients was essential to me, in order for me to make my own assessments and decisions, going forward, on how I would approach and plan my journey with PCa.

    I joined, second, because I believe in giving back knowledge and perspective to others, commensurate with receiving them from others.  I have freely shared my expereinces related to my journey with PCa, with the understanding that some folks on this Forum may find it useful and beneficial to them in their journeys with PCa.

    I used to get anxious just before each PSA blood draw, in the 30+ months of having a non-detectable PSA score, following radiation therapy.  However, once my PSA score became detectable again, most of this anxiousness has disappeared.  Now, I simply deal with the test results, and then assess/re-assess and embark upon recommended treatment plans, that make sense to me and my own PCa journey, as they occur.

    And, most important, I continue to strive to gain the most out of my life and those around me, each and every day, as none of us are here in this plane of existence forever.

    We each approach our PCa journeys differently, and that is OK.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    edited October 2019 #36
    Josephg said:

    I agree with Georges.  I did not join and contribute to this Forum because I was, or am, anxious.  Not at all.

    I joined, first, to learn about fellow PCa patients' experiences, as I wanted to gain knowledge of their perspectives and experiences on PCa, related to diagnostics and recommendations, grading parameters, treatment options, and resulting side effects, directly from the patients themselves, after I initially received this perspective from my medical providers.  Having the knowledge of these multiple perspectives and experiences from actual PCa patients was essential to me, in order for me to make my own assessments and decisions, going forward, on how I would approach and plan my journey with PCa.

    I joined, second, because I believe in giving back knowledge and perspective to others, commensurate with receiving them from others.  I have freely shared my expereinces related to my journey with PCa, with the understanding that some folks on this Forum may find it useful and beneficial to them in their journeys with PCa.

    I used to get anxious just before each PSA blood draw, in the 30+ months of having a non-detectable PSA score, following radiation therapy.  However, once my PSA score became detectable again, most of this anxiousness has disappeared.  Now, I simply deal with the test results, and then assess/re-assess and embark upon recommended treatment plans, that make sense to me and my own PCa journey, as they occur.

    And, most important, I continue to strive to gain the most out of my life and those around me, each and every day, as none of us are here in this plane of existence forever.

    We each approach our PCa journeys differently, and that is OK.

    Wonderful

    Beautifully stated, Joseph.  I suspect that 99% of the readers here deeply appreciate all that you contribute; I certainly do.

  • Damp
    Damp Member Posts: 25 Member
    Josephg said:

    I agree with Georges.  I did not join and contribute to this Forum because I was, or am, anxious.  Not at all.

    I joined, first, to learn about fellow PCa patients' experiences, as I wanted to gain knowledge of their perspectives and experiences on PCa, related to diagnostics and recommendations, grading parameters, treatment options, and resulting side effects, directly from the patients themselves, after I initially received this perspective from my medical providers.  Having the knowledge of these multiple perspectives and experiences from actual PCa patients was essential to me, in order for me to make my own assessments and decisions, going forward, on how I would approach and plan my journey with PCa.

    I joined, second, because I believe in giving back knowledge and perspective to others, commensurate with receiving them from others.  I have freely shared my expereinces related to my journey with PCa, with the understanding that some folks on this Forum may find it useful and beneficial to them in their journeys with PCa.

    I used to get anxious just before each PSA blood draw, in the 30+ months of having a non-detectable PSA score, following radiation therapy.  However, once my PSA score became detectable again, most of this anxiousness has disappeared.  Now, I simply deal with the test results, and then assess/re-assess and embark upon recommended treatment plans, that make sense to me and my own PCa journey, as they occur.

    And, most important, I continue to strive to gain the most out of my life and those around me, each and every day, as none of us are here in this plane of existence forever.

    We each approach our PCa journeys differently, and that is OK.

    It would be nice to have a

    It would be nice to have a like button to click on when a post like Joseph made.  Thank you.