What is a Prostatectomy Like?
It is living hell
You wear a catheter for 7-10 days after surgery,
Then the fun begins.
You are now incontinent, and you must wear diapers, you actually leak pee,
It at times squirts out of you. You have constant urge to go meaning trips to bathroom every hour or less.
You have to deal with constant leaking, ED, potential UTIs.
Embarrassing and
Humiliating absolutely terrible time.
The care team will tell you that the
Incontinence last 9 months or more.
Remember prostrate cancer is slow growing
Surgeons will encourage surgery and your cancer will be gone but your life has changed forever because the incontinence is a daily challenge. Assuming you regain continence then you have to deal with ED.
Research as much as you can before making the decision to have prostatectomy. It is your body and your life afterwards.
But you potentially traded quality for quantity of life.
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
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That about nails it, except...your urologist/surgeon may tell you that the cancer is gone forever, but that is the lie. We here are a large subset of men...the majority?...whose cancer keeps coming back, or we are told that it will eventually come back. We likely do not have contributions here from the men who were Gleason 3+3=6 and who had fully membrane/capsule-contained cancer with no perineural invasion, no extraprostatic extension ("EPE"), no surgical margins, no cribriform glands, no seminal vesicle invasion, no lymph node involvement, and no bone metastases. Those men were lucky and had their radical prostatectomy, and will likely go on to lead perfect, normal lives with no future recurrence. But then...there is the rest of us...the guys who were told "sorry, I didn't get all of the cancer out of you...you have surgical margins because you tumor broke through the membranous prostate capsule and caused surgical margins to include invasion into your seminal vesicles." "So...you are at minimum a pT3b whose cancer has a 25%-50% probability of recurring "within" five years."
Whenever that happens - if not before - your urologist will refer you to a radiation oncologist for a radiation therapy consult - either adjuvant (immediately after surgery within the first six months), or salvage radiation (six months or after surgery). Then if you have radiation, your bladder and urethra have likely been fried, and just when you regained full urinary continence 9-12 months after surgery - or anything close - you have now lost it for the rest of your life because your urethra is in fact fried from radiation. And...if you're really unlucky, you might fall into the 1-2% whose radiation caused bladder and/or rectal cancer later in life. Either way, when the radiation fails to have done the job thoroughly, your cancer will return yet again, and you will be put on hormone treatment and become a whining, emotionally labile woman who is unable to control your emotions and feelings, as you quite possible start developing small breasts. All this time, your doctor is just telling you that this will be your next treatment - whatever it is - all while hoping that you die of something else beforehand because prostate cancer grows slowly, because...they really do care enough that they do not want to see you go through the excruciating pain of bone metastases. That is kind of the likely reality for those of us here if you are kept alive long enough to go through all of these phases. Sorry...that was quite negative, but I have been in this blog enough to have read many stories that are subtle variations of all of the above...and that stinks. I empathize with everyone whose reality is any of the above or worse. I hope that you find peace and a pain-free existence for as long as possible.
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2 Reactions@rlpostrp
"Cancer sucks, then you die"
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1 Reaction@rlpostrp
Long, depressing summary. But... then we grow tits?
I'll take the win.
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2 ReactionsApparently so, but nothing to write home about. You'll be buying 12-year old training bras. Sorry, no "D" cups in your future if/when you go on hormone therapy. I will just live out my days, whatever they may be, WITHOUT ever going on hormone therapy. You are literally messing with your pituitary gland when you start messing with hormones. Just look at all of the biological males and females who regret doing a gender transition. The reason the young "guy" shot up the Catholic school not long ago, was because he couldn't take it anymore, in what he was feeling biologically...all messed up physically, mentally, and emotionally...from the hormones he was taking to become a she.
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3 ReactionsThere are statistics about pain, incontinence and ED and the vast majority of men who resolve these issues. However this is the most personalized experience ever. No one can accurately predict what your experience will be. Gleason scores, spread and diagnostics make everything distinctly personsl. For me, surgery was preferable as it allowed for a pathology report to properly stage the disease. Ultimately, it wound up being a lot less serious than my first diagnosis. My personal experience was virtually pain free and my progress on side effects is proceeding as predicted. I had the most experienced surgeon at Mayo and a wonderful surgical and support team and a clean nerve sparing result. I don't regret my choice as radiation can have similar and worse side effects including bowel issues. They can just show up a few years down the road.
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3 ReactionsIt is different for everyone. Your description didn't match mine at all. I am sorry that a number of responders had such negative outcomes. Still, your results may be much better/easier than those.
The #1 advice is: find the most highly skilled surgeon you can find, in a hospital of excellence, regardless of location.
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2 ReactionsExactly 💯💯 Surgery was booked and after doing research we declined. Actually my husband can't have surgery due to prior radiation with colorectal cancer. Fibrosis knits the organs together and complications are massive. But we had to find that out ourselves and were gobsmacked that the complications were not spelled out. They were willing to do the surgery without full explanation of what quality of life meant. My husband is on Lupron hormone therapy and we thank our lucky stars that we said no to surgery. We have fans set up for sweats, but really we are enjoying life together as long as we can. He's 74 with a Gleason 9. Eventually the cancer becomes resistant and we'll have to move into more drugs. Hopefully he can outlive the cancer
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2 Reactions@nymitch I could not agree more. Find the best center of excellence with high volume your insurance will allow. Even my biopsy was painless. It was by the doctor at Mayo with the most experience in transperineal biopsy - the only type they do now. My luck of the draw. And, considering the less than pleasant experience of others, I certainly feel lucky. All my best to everyone going through this.
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2 Reactions