Who regrets prostate cancer treatment decision more-the radiation or the surgery patient?


20140801-181252-65572544.jpg

I think there are some pretty unhappy and angry people on both sides. If you got the “rare complication” of either treatment you wish you’d done the other!

If you do bad with surgery you blame the urologist. If you do bad with the radiation you blame the radiation. Big difference.😳

18 Replies to “Who regrets prostate cancer treatment decision more-the radiation or the surgery patient?”

  1. Actually, if your Urologist (the contractor) does a bad surgery on you (the buyer), covers up and alters your records, refuses to give you your CD of your 5 hour “standard robotic surgery” for PSA of only 8.1,and does not inform you the buyer/ patient of what the known results of “low quality of life” after his surgery and that all Doctors change definitions of what words meant before surgery and what they mean after prostate removal, then Heck yes, there is world of difference. Its called “informed consent”.
    Erection does not mean erection any longer after surgery.
    Before when your erection starts going soft after playing with your sweetheart for an hour or more you say “ok I think we need to rest a while”
    After your contractor removes your prostate they now call a soft, barely kindof stands up penis a success and use forms that say “erection sufficient for penetration” because thats all you will get.
    Lots of big differences between informing the patient of the truth about surgery. Remember he came to a Doc because you are his research, you are his expert and every doc should be required by law to distribute papers, universally prepared and used in all 50 states, to patients informing him of the truth of life after prostate removal. Include all details of every aspect of pee dripping out all the time, squirting out with sneezes or rolling over in bed, because the Doc removed his bladder neck sphincter, and on and on till it is all revealed and the contractor made sure the customer is educated and informed so the customer/patient then has the ability to give “informed consent”.
    One can not compare a patient/customer of informed radiation treatment Doctor to a patient/customer uninformed by Urology Doc (translate=surgeon).
    Rage is justified when Doctors lie or withhold the real truth, the in depth of what really happens to you after surgery.
    Remember the Urologist IS the expert Doctor/contractor sought out by the patient/customer to tell him the truth, the whole truth and nothing but the truth.
    A patient/customer can do no more than diligently rely that is Urologist/Doctor/Expert/Contractor informed said potential customer of aforementioned truths. Patient did performed his due diligence by seeking information from his expert, his contractor, his Doctor, Be it Urologist or Radiologist or whatever.
    Not as simple as saying “if you got bad result from one method you regret not having the other method”
    Not at all that simple.
    But I found out the law apparently allows Urologists to not inform their potential customers of these truths.
    So sad. Americans should finally stand up against bullying like this.
    No honest Urologist or Radiologist should ever be opposed to informed consent. Informed by the Doc you paid to tell you the truth and then do surgery or radiation.
    And by the way: Really? A Urologist is not who you go to get the early prostate cancer radiation treatments? wow there is another thing my Urologist did not tell me.
    We must put patients needs and rights and education first and not just a means to income for anyone in the healthcare field.

    Like

  2. I think the education should start with an understanding of the debate about whether screening for this disease is of value, or does more harm than good. I understand that whether to submit to PSA screening is an intensely personal decision but given the implications of a positive diagnosis for most patients in the U.S., it just won’t do for the Urology profession to sweep the science from the two largest studies to date under the rug.

    Like

  3. Twenty months after surgery for prostate removal ala davinci method I am still suffering with incontinence and there are times,ie, attending ballgames, going out for an evening, etc that I have remorse for going through with the procedure.
    Erectile dismay, never again will I be able to get a “boner”. I have tried the penis pump and will get a semi rigid feeling with only half the normal size, so what is left to life? Feel more worthless every day.
    But the psa was below zero on my last blood workup. Gotta weigh the good and bad I guess.
    I have been told the urologist should explain before the procedure as to how to do the kegel exercises to strengthen the muscle prior to the bad shit. Mine did very little communication with me but I guess I should take some blame for not inquiring as to post op and later.

    Like

    1. No Robert you are not at fault in the slightest.
      We as victims of poor medical information (truth) from our hired expert (the Doctor) will typically, I have learned, start blaming ourselves. I too am like you. Exactly 48 months past Robotic Prostatectomy. I used to blame myself for not seeing what was really going on and not protecting myself. Human nature when dealing with authoritarian figures over us. We have all learned to “do as the doctor told you to do” or something similar (You know what I mean).
      We blame ourselves like children blame themselves when a parent does bad things to them. We feel it must be “me” that is bad and made this happen to me and not the authoritarian figure being mean and bad.
      The Doctors (excuse me Surgeons) need us for an income.
      Doctors make money from office visits. Surgeons make money from office visits and then much more if it results in surgery. Sorry, but you all can not deny this. They view us in that light, weather they admit it or not.
      You went to the expert, the Urology Surgeon (your contractor)
      His ONLY job was to place your interest first and foremost, educate you completely of ALL the facts and ALL the truths of real life after surgery.
      His only job yes, his only job. He must ensure you have the ability to “give informed consent”.
      Did our experts tell us they “always remove your bladder neck sphincter which is responsible for keeping pee in your bladder and when they take that out you only have that little back up muscle that you used to STOP your stream with?
      And how long can we hold that tight in that position?
      Most men will always be incontinent and wear diapers, pads, protection.
      And you know now they invent a new standard of dry? Now if you only leak drops and use one diaper a day they call that “continent”. Really?
      Same thing on erections. If it gets kind of puffy and you line your sweetheart on her back just right and legs way up and back and if you can get Mr Little Puffy to at least go in, the Doctors call that success. They call it “erection sufficient for intercourse”. LOL used to be when it got that soft we were all done and we stop playing, Now IF it gets UP to that soft then we can use it.

      No Sir Robert you did nothing wrong.
      I know nothing about Radiation, my urologist never told me what he would do for me with radiation. Turns out I think I have heard, that the Urologist does treat your prostate cancer with radiation, he only does surgery.
      So you dont go to a Urologist for Radiation?
      You will see a brick wall put up by Urologists slamming what I say.
      Surgery curing your early stage prostate cancer is really not the question, They can do that. Not taking your life away from you IS the problem.
      It was my life and I swore I would never have surgery when I got old because everyone knows once you have prostatectomy you will be limp and useless the rest of your life. All three “expert” Urologists (contractors) called me completely wrong, that stuff only happened in the olden days, not now.
      They convinced me they were right and I was wrong.
      Yep, I will blame myself for not trusting myself and blame myself for believing those Urologists.
      But it was not my fault.
      Just tell us “the truth, the whole truth and nothing but the truth”
      Only then are we informed and can give “informed consent”
      We should stand up to this type of bullying and require by force of law that they tell us the truth.
      This is one time I will say a law enacted by government would be a good thing.

      Like

  4. And guys, did our Expert Urologist Doctor Surgeon Contractor tell you before surgery that our sweethearts really cant stand your pee dripping penis to be in their mouth? That most women are terribly turned off by a peeing penis being on top of them? Did they tell us our sweetheart will naturally just kind of want sexual activity to become not important so they dont have to put up with all the pee problems? The bed pad hassles? How horrible sleeping on plastic lined absorbent bed pads (thank you depends nonetheless) all night for 6months in the extra bedroom is? How gross and wet & damp all the time yes 24/7/365 for the rest of your life in diapers and pads is? And its really soooo much fun when its 90 degrees out and your have to wear plastic encased diapers and pads so your just dripping sweat from everywhere down there? (thank you depends nonetheless)
    Did they tell us girls don’t like the post prostatectomy guy to wet the bed when pee comes out of him when he turns over in his sleep? When he rolls out of bed? When he stands doing nothing in the living room? When he stands up from sitting on the sofa? Did we get told girls typically are turned off by a limp, or puffy penis peeing inside their vagina with attempted sexual intercourse? Did they tell us your girl may get constant UTI’s from you peeing in her even though Docs say urine is sterile? Did they tell you to get a big diaper trash can for all your diapers and pads? Keep extra underwear and extra pants in your car so you dont have to leave work when you find pee got past your big pad? Did they tell us you may not want to ever wear Khaki slacks because we all know it really shows wet spots where you can sneak by with black work slacks? We dont get to hide in scrubs when we work. Our pants are out there for the world to see.
    Did they tell us we will need to constantly look at our crotch to make sure your not showing wet pee in front?
    Did they tell us simply that a peeing incontinent penis will squash your amazing (up to 2 hours before surgery it was amazing and 5-7 times a week) sex life?
    Did they tell you since we will cut out your bladder neck sphincter also called your proximal sphincter, (your main pee shut off valve which has always been held tightly closed by your autonomic nervous system not voluntary?
    Your distal sphincter is also called the urethral sphincter it is the one you made Mr Big (pre prostatectomy) dance around with, they one you use to stop the flow of urine, the one you use in Keigle(sp) excercises and is involved in ejaculation?
    I dont know anything about radiation, I cant speak of that I was not informed by my expert urologist surgeon contractor what he would do with radiation for me.
    I only know all the stuff I know now I did not learn from my Urologist.
    I learned it by being forced living with the results of what I swore I would never let happen to me.
    I am the one who decides which path I want for my life after I have the reality of early stage prostate cancer.
    You should have told me the truth the whole truth and nothing but the truth.
    Yes I get pissed off even 4 years and 10 days after it was done to me.
    Where did my inch or inch and half go? Why is it if pumped up or injected it only gets to 5 to 5.25 inches? Why dont I get my normal 6.5 inches even then?

    I cant believe Doctors would put up brick walls against them being forced to tell us the simple truth.
    And they should be forced to keep a running “performance outcome” chart of all their prostate surgeries. So we can see how the real outcomes are if they do our surgery. You know, the ones that say something like ” 84% of men will have erectile dysfunction for many years and will never return to normal” or “76% of men will be incontinent the rest of their life”
    And darn it all, stop changing definitions of words.
    An erection is a fully rock hard penis full length and for a long time with no aids like pills, pumps, bands, needle injections and those erections will happen every night and lots and lots of time whenever desired (lol or at times not desired right in that circumstance), or when touched, or needed.
    I never called a limp penis something that is “sufficient for Intercourse”.
    I never called me “socially continent” if I use one diaper per day.
    I thought continent was learned in school about those big land masses between oceans!
    Prostatectomy did not give me “stress incontinence” (stupid term and overused) the reality is we have “PFNFR incontinence”.
    “Pee For No F-in Reason”
    Oh and now WITH an artificial Urinary Sphincter implanted NOW I have “stress incontinence”. If I sneeze I drip/squirt, if I cough I drip/squirt, if I tighten “mr no longer big anymore” during sexual play attempts I drip/squirt, and lots more events.
    This stress incontinence the AUS implant gave me is better than “PFNFR”.
    Oh yes, he never told me I would need that after prostatectomy.
    Oops, I guess he was so busy he forgot, ya think?
    Put it all in writing, give all the info to poor dumb schmucks like me and then we would be informed prior to choosing your surgery.
    Force them to give us all this as required by law.
    I did not get the opportunity to say no to all these real results.
    They stole that from me. I made a decision based on what they told me and they withheld the truth.
    Stop. Dont let them keep the truth from you or anyone you know.
    Make the Doctor tell you all the truth of his surgery results.
    Even the playing field. All fair and square. Both sides of the doctor patient relationship have ALL the exact same knowledge of prostatectomy and its real results and outcomes.

    Like

  5. Wow, the anger and disappointment following robotic surgery is truly palpable! Is anyone out there truly happy with his results — continent and fully potent?
    Would anyone out there choose surgery again knowing what they know after having had it done?
    Please respond folks.
    JB

    Like

  6. Well I had both. I don’t regret either one. However after surgery and radiation nearly 5 years ago I now have an escalating PSA score. Which has several doctors baffled and leaves me in limbo as I’m not a candidate fro any conventional therapy.

    Like

  7. No. Not at all would I have chosen My doctor/expert/surgeon/contractor service performed on me had I been informed by them of the truth of his surgery results.
    I had three experts and they all told me basically the same thing.
    I was wrong, prostatectomy does not at all take away your erections; nowadays with the Da Vinci we can see all the nerves and so we avoid cutting them. You will recover form major surgery, your erections will return and be fully back to normal like you were before surgery in 3 to 6 months.
    And I only thought for my 50+ years that Prostatectomy took away your erections forever. I never knew their prostatectomy would make me a dripping pee monster forever. Ooops. But of course there are doctors that say to this issue “well my friend, you should have researched better, you did not ask enough questions….” and on and on.
    Like I didn’t ask? Really? What does one think the question “Doc please tell me and my wife everything you know about what happens to my life after your surgery”, “Doctor, what questions should I be asking you since you know everything about all this stuff?”, “Doctor, what questions will I discover after surgery that YOU forgot to tell me to ask you before surgery?”
    Silly thing is, I actually said exactly that in 2010 to every Contractor/Expert/Urologist/Surgeon I saw. Every single one. Totals 5 or 6 now I think.
    You see I am a dummy Doc, so you must educate me so I can then make an informed decision about your treatment plan.

    I know nothing about radiation, as my Urologist did not tell me what those treatments he would do on me would affect my life thereafter.
    I have heard now and I think i understand that Urologists do NOT do radiation. We on our own are supposed to know who to go see about that?
    So your Urologist is not the one to see about treating your Urologic cancer condition?
    And how would I know a Radiation Urologist would have told me the truth out of his mouth about his treatment plan?
    I am dumb; I dont know what I dont know and cant ask about something I know nothing about. Which is why we go to doctors/experts/contractors; to have them teach us the truth of what they will do and what we must live with if they perform their service on us.
    Putting it all on paper as mandated by law is the only way to help ensure doctors do not keep the truth from us.
    Well at least he got paid for surgery. Worst uninformed $20,000 ever spent.

    Like

  8. Anyone? Anyone truly potent and continent after robotic surgery? Please respond about this… everything above is such a shocking eye opener! Aside from being happy they’ve been “cured” of a potentially deadly disease, can it really be true that absolutely every patient is totally dismayed about their continence and potency following robotic surgery?
    JB

    Like

  9. As I stated earlier Jack B., I for one am sorry I had the surgery, (robotic). I was 71 wen I had the operation and was still functioning sexually and never pissed my pants. The thought of dying from the effects of prostate cancer didn’t ring very well with me. But then many times have I read you will probably not die from prostate cancer but you will die with prostate cancer.

    Like

  10. I will ask again for the last time: Has anyone reading this blog had prostate cancer surgery and retained both sexually potency and urinary continence? We’ve already heard form those who are unhappy, but surely at least one post-op person out there must have had a result that truly lived up to the promises made prior to surgery. Please respond.
    JB

    Like

    1. Hey JB,
      Good luck finding one. There may be a few who are ok with the low quality of life we all have after the Wonder Miracle da vinci procedure. But that poor quality of life is not whatt we were told we were purchasing. I resent being lied to by my expert contractor @ 55 years of age. I cant believe I was this old and still let myselg get duped.

      Like

  11. I had Robotic surgery at the age of 54. My Urologists informed me that all of the other options for treatment were not an option based on the Gleason score. So it’s been 8 months post surgery and I am now to the point of getting a boner but I need to take 5 mg of Cialis every day. I changed my diet to include more fruits and vegetables and less caffeine and sugars I increased my level of physical activity quit smoking and lost 20 lbs.

    I still have a drop or two of pee and yes I have leaked on my wife but she is supportive and tells me not to worry.

    Like

  12. 47 Year old A.A. male diagnosed 8/19/2015 3+4 PSA 5.1. Robotic at Johns Hopkins 12/07/15 Organ confined positive margins. 1st post op PSA, <0.01. Now the fun part. I had strong erections and had sex a few times a little less than 1 month after surgery. Six months later absolutely nothing is happening. Cialis and Viagra does work for me but gives my bad indigestion. Down to one pad a day. Strange feeling of having to urinate all the time. Would I do it again? Absolutely emphatically no! I should have investigated proton therapy and Prostacision more thoroughly. Its like they push you into this surgery with scare tactics. Those who are considering removal you have been warned!

    Like

    1. Mike, as a guy with Robotic prostatectomy 07/20/2010 same gleason 3-4 & good margins as you, I was specifically told “not getting erections after surgery was only in the olden days, or to old guys who already have erectile problems, with my latest training and Robot surgery you will be fine, your full erections will return like before in 30 to 90 days”. Nope I was right he was wrong. “you need to be patient, it takes time”,”oh Doc its been 6months,9mo,12 mo, 18mo, 24mo, 30mo, 36mo, 42mo…66months” I had to have the penile implant 12/09/2015 by another doctor. The pills did nothing for me and pee came out all the time. Pee? He never talked about pee problems. Pee came out all the time. I had to use diapers then graduated to big thick pads. Had to have Artificial Urinary Sphincter installed Jan 2014. Graduated to just mens panty liners. Yes my Doc lied to us, he did not tell he did NOT do any other treatments, only surgery. He did say surgery was the best for me. Oh I see why surgery was best for me.
      I will say to you Mike if the pills work (& don’t bankrupt you) it is because you have intact nerves. Pills ONLY work if you have enough nerves left. In YOUR case the “lets wait and see” may be accurate. I know “but it’s been 6 months!?” Just make it through. Try the encore vacuum device to alternate with pills. BTW the penile injections hurt like hell. Try to just make it through. I know I hated it never working, destroys your life. I hate it not working, and these devices in me.
      Truth is penile implant problems is circumference loss not too much length loss as is always talked about. Before prostatectomy I was 5-7/8″ around 6.2″ long.
      Before penile implant I was 5-3/4″around and 5.5″L. After implant I AM only 4-1/2″ around 5.25″long. This Doc is a top doc over 2,200 implants. Neither he nor AMS company say anything about how small around the implant cylinders.
      Your mr big will not be kinda roundish like before, it will be oval. Because it is 2 round cylinders side by side. Draw it on a piece of paper. Heck yes this f-in loss of 1.25 inches circumference is terrible. So is the total loss of one inch length! Now thats the truth the whole truth and nothing but the truth.

      Like

  13. I did my due diligence after diagnosis at age 54 and decided on surgery first, salvage radiation in case of recurrence. Because I was well informed, my oncologist/surgeon was extremely honest and blunt. With my high PSA (40.98) and short doubling time he would be performing a non-nerve sparing Laparoscopic radical prostatectomy. This would result in no possibility of spontaneous erections following surgery. He would do his best to preserve continence. And if he couldn’t get a good ‘feel’ through the Laparoscopic tools, he would cut me open and ‘gut me like a fish’ to ensure the best possible outcome… life. Surgery was performed in November of 2008.

    It took 3 months to get continence back. There have been no erections, even using trimix.

    In June of 2011 my PSA started to rise, and in June of 2012 I underwent 40 radiation treatments. Both my primary oncologist and radiation oncologist explained the probable loss of continence and probable chronic colitis following radiation. The only adverse reaction is chronic colitis, but I am still in remission.

    I do not regret having surgery, radiation, or the 6 months of hormone therapy post surgery. Based on the aggressiveness of my cancer I would probably be dead without all of the therapies. It’s important knowing all possible outcomes (death, complications from infection and scarring, incontinence, and erectile dysfunction) to make a decision that is right for you.

    I have an acquaintance who is dying from aggressive prostate cancer. He was diagnosed with late stage cancer at 64, after not seeing a doctor for 15 years. For anyone in remission, no matter what symptoms we have as a result of treatment, those symptoms are a cakewalk compared to what my acquaintance is going through. Something to think about.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s