Would you go ahead with a Prostate removal?

Posted by casd57 @casd57, Sep 19 9:43am

Long story... 69 year old Male
I've had a enlarged Prostate for a few years....PSA has been as high 16's and as low as 5.27 on finasteride.
3 biopies the last one MRI-computer guided they only found a couple small lesions but no cancer... that was 2 years ago
July this year in the middle of the night..I couldn't pee... went to the ER
they did the optilume processor and catheterized me and sent me home...3 days later they removed the catheter and that night I stopped peeing again....Back to the ER..back in went the catheter..this time 7 days in.... 2 day after removal I couldn't pee back to the ER
and I went to see my Doc within a week..They taught me to self catheter until I could see the surgeon ... I catheterized a couple times and then I just said nope..lets wait and see and it was fine, no problems for a 10 days...Saw the Surgeon he set up my next appointment for Oct 7th..for all the test...
He does the robotic..removal through your penis Yikes...lol
So I've only had to catheterized one time in the last 3 weeks but I do get blood once in a while and I think maybe it was a clot that caused that...
My question is this.... Since everything seems to be working and if it does stop I know how to self-catheterize ...Should I go to the extreme and remove the prostate..if they don't find cancer on the 7th..I mean I don't know if they are looking or doing a MRI or ?..
I just feel like maybe I'm going to far and maybe the end results will be worse then the present problem..which other than maybe stop peeing, there isn't nothing new.
One other kicker.........I've hit my Out of Pocket max with my INS..so this would be 100% paid......LOL jeeezzz

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for casd57 @casd57

I told the Doctor..yesterday that before we proceed..i want to check for cancer
His reply was:
Because your doing better and responding to finasteride well i think ill have you come back in 6 months for a blood draw ..PSA and go from there..
Okay now my opion is this ...he didnt think the removal was necessary at this time also...
It almost felt like he had a sly of relief because he was so fast at stopping for 6 months..with no argument..or anything..

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@casd57 OMG!! That is the last thing a good urologist should say; “oh, you’re peeing better so no need to look for cancer - see ya!”
You don’t need a COE - just someone better than this guy!
Phil

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Profile picture for floridason @floridason

Get a second opinion at a “center for excellence “ - consider after effects and ability to treat for cancer if it shows up later.

TLDR;
This stuff can be confusing but mine was surgically removed due to cancer. But you don’t have cancer, you have lesions. Are they pre-cancerous?

What about the non removal methods to get a smaller prostate?

Have you read about lifestyle changes after surgical removal? This is major surgery. Just the lifting over 10 lbs is 8 weeks.

Do they really cut the urethra? Asking because they absolutely do with surgical removal (robotic, through abdomen thank goodness)

The second opinion - at a center for excellence is gold. My local urologist is stuck in the 1980s and once shouted at me - “robotic!? I have been doing this for 35 years.”

I stood up, said “and that’s the problem” and left. Went to Mayo but there are other centers for excellence.

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My husband had prostate cancer last year. He opted to have a prostectomy. A year later, he’s not doing good. The surgeon severed his colon. Now he has recurring incontinence. He says he’d rather live with this than the constant pain that he was going through.

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Profile picture for casd57 @casd57

@payner
One of the factors that was pushing me to get this done was because of the 3 ER visits...the optilume done i have hit my max out of pocket for the year, so at this point everything is 100% paid until January
But still no cancer is a no go for me..

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@casd57 well, if no cancer, look for other options. My husband only had his prostate removed because he had cancer. + the surgeon severed his colon during the surgery & has had a whole lotta problems ever since. He had to have a ostomy bag for 6 months because of the surgeon’s “error”. No lawyer would take his case, which proves that “they” are untouchable. Now he’s miserable, going through random pain in his abdomen & urethra. He has to wear “diapers” often. & his quality of life has been disrupted. That surgeon said, right before the surgery, “I’ve been doing this for years & I’ve Never had Any problems.” I guess my husband was his First problem. He severely damaged him. So, seek second & third opinions before going through surgery, if you’re going that route.

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Profile picture for saradruss @saradruss

@casd57 well, if no cancer, look for other options. My husband only had his prostate removed because he had cancer. + the surgeon severed his colon during the surgery & has had a whole lotta problems ever since. He had to have a ostomy bag for 6 months because of the surgeon’s “error”. No lawyer would take his case, which proves that “they” are untouchable. Now he’s miserable, going through random pain in his abdomen & urethra. He has to wear “diapers” often. & his quality of life has been disrupted. That surgeon said, right before the surgery, “I’ve been doing this for years & I’ve Never had Any problems.” I guess my husband was his First problem. He severely damaged him. So, seek second & third opinions before going through surgery, if you’re going that route.

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@saradruss
Thank you for your input
And im sorry for your husbands misfortune
And at this point...i stopped all ideas of removal until cancer is proving, I will watch for my PSA doubling timing.
Which it hasnt...
It did raise to 16.9 and then back down to 11's
But on finasteride it was 5.27 of course you double that number and im back at 11's
I think the issue i had with urnation was that i stopped finasteride in Feb..by July 18th i couldnt urnate...which im thinking because my prostate got large again..and cut off flow
Went back on after my first ER visit..in July
And im back to normal again
What is weird my libdo is back..which had been gone for months
Maybe my body has adjusted to finasteride???
Who knows

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Profile picture for casd57 @casd57

@saradruss
Thank you for your input
And im sorry for your husbands misfortune
And at this point...i stopped all ideas of removal until cancer is proving, I will watch for my PSA doubling timing.
Which it hasnt...
It did raise to 16.9 and then back down to 11's
But on finasteride it was 5.27 of course you double that number and im back at 11's
I think the issue i had with urnation was that i stopped finasteride in Feb..by July 18th i couldnt urnate...which im thinking because my prostate got large again..and cut off flow
Went back on after my first ER visit..in July
And im back to normal again
What is weird my libdo is back..which had been gone for months
Maybe my body has adjusted to finasteride???
Who knows

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@casd57
It definitely sounds like you should visit a center of excellence. You could go to Hutch in Washington state. You do need a urologist, not an Oncologist unless they find something. This is the place to contact.

Hutch in Washington state
Both GU Oncologists
Dr. Michael Schweitzer. A real good oncologist
Dr. Lawrence Fong

There’s another one in Oregon if that’s closer

OHSU Portland Oregon
Eleni Efstathiou, MD, PhD Really good oncologist, One of the best

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Profile picture for casd57 @casd57

@saradruss
Thank you for your input
And im sorry for your husbands misfortune
And at this point...i stopped all ideas of removal until cancer is proving, I will watch for my PSA doubling timing.
Which it hasnt...
It did raise to 16.9 and then back down to 11's
But on finasteride it was 5.27 of course you double that number and im back at 11's
I think the issue i had with urnation was that i stopped finasteride in Feb..by July 18th i couldnt urnate...which im thinking because my prostate got large again..and cut off flow
Went back on after my first ER visit..in July
And im back to normal again
What is weird my libdo is back..which had been gone for months
Maybe my body has adjusted to finasteride???
Who knows

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@casd57 whew! I’m glad you’re doing good. I just told you about my husband so you can keep that in the back of your mind. We all know that there’s always a chance of the surgeon messing up, but we didn’t expect it for my husband to be one of them.
I pray that God be with you on your journey. May He keep blessing you with good health. Take care of yourself, which I see that you are. Blessings always.

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Sorry, but I do have One more Important recommendation.
If & whenever you have surgery, make sure you’re Not the LAST ONE! My husband was the last of 8 surgeries in One day. We think that the surgeon might’ve been tired when he “accidentally severed the colon.”
Very important note to take!

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Profile picture for bajjerfan @bajjerfan

@copyman

My reply was to suggest that a CT scan might be just as useful as a MRI scan.

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@bajjerfan It isn't. MRI is the gold standard in my opinion.

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Profile picture for saradruss @saradruss

My husband had prostate cancer last year. He opted to have a prostectomy. A year later, he’s not doing good. The surgeon severed his colon. Now he has recurring incontinence. He says he’d rather live with this than the constant pain that he was going through.

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@saradruss Did he sever it while cutting a port for the robot arm?

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