Very Disappointed

I looked for your previous threads, but did not find them. Can you re-post the information about your situation?........Thanks

Is there some reason your choices were limited only to HIFU and surgery?

mcin777 said:

Check it out

Hi Grinder,

I really do not have any BPH issues at all.  I normally sleep through the night without any need to urinate.  When I do wake up I guarantee you that there is a need to empty the bladder.      Ultrasound was my preferred treatment because it is non invasive.  The HIFU Urologist saidI am not a candidate for Ultrasound because my prostate is almost 4 times the normal size of 40ml.    He suggested RP.  I measure at 109ml.  My regular Urologist has done thousands of RPs.  He also suggested RP of course.  The concern is that my Fusion MRI indicated that a difused Capsul was rated at T5.  However the biopsy indicated that it was bengn.  Three Urologists think that the biopsy just missed the cancer and that is why they conflict.  The capsul raises the risk of the cancer escaping the prostate.  Fortunately the MRI did not show that it had.  What I have learned from these Urologists is that most all tests no matter how advance they are....are not always accurate.  They only suggest a possibility one way or the other.  Nothing is for sure.  I have gone 6 years on AS.  I think the time has arrived to get some type of treatment.  I will be sending my medical findings to John Hopkins for their analysis.  I was also told that due to the size of my prostate I am not a candidate for see implant.  My options are being diminished and channeled toward the two I did not want...RP and radiation.  I know the seeds are radiation but administered in a manner I would prefer if I have to go in that direction.

What you are dealing with currently, mcin777, is a lot of ambiguity.  When in ambiguity, focus on certitudes -- the things that are certain.

You have PCa, likely contained. You have a massive gland.

A benefit of RP is that once a gland is cut out, the doctors know EXACTLY what is going on. The Gleason is positively established. Tumor size is no longer guesswork.  Imaging for PCa, compared to other cancers, is crap.  Newer MRIs, like the T3, are better than in the past.  But they leave a vast amount to be desired.  Post surgery, the surgeons will see if cancer has "eaten its way out."   And a multitude of nodes will be extracted to verify the same issue.   Short of surgery, guesswork and reasoning are all a man has in many cases.  Watching PSA bounce up and down for a year or more, wondering if you are cured.

In general, a gland your size is not a good candidate for brach (seeding), as you note.  If you choose RT, IGRT is likely best, given the ambiguity of where cancer is or is not.

Sending the results to Johns Hopkins was a great move and hopefully will yield good recommendations for you. Side-effects are a reasonable concern for any man, and surgery has more of them than RT.  But saving a life is more critical than minimizing side-effects in cases that are not clear-cut.

max

In case you haven't checked out the RP side effects, these are the TYPICAL side effects and duration. Some have much shorter durations, some have PERMANENT. But these are typical:

Foley catheter first week after RP.

Total incontinence after Foley is pulled. Typical duration is six months before significant improvement depending how much damage was done that requires more of less healing time. In rare instances, permanent incontinence requiring an artificial urinary sphincter implant. Typically after one year total continence has been restored.

Erectile Dysfunction typically takes much longer, 1 to 2 years. And sometimes permanent as well, factors influencing ED are also age and healing time. Artificial aids to help speed healing are vacuum pumps, 5mg Cialis, trimix injections, etc.

Penile length reduction. This is the one nobody talks about in the urology office. You will have a section of the urethra cut out with the prostate, then the penis is pulled up, and lose 1 to 2 inches of length. Then, once erection is restored, it will be proportionate to the loss as well. In my case, if I can speak candidly, my length was about four inches unerect, and up to 12 inches fully erect. After RP, it's only 2 inches unerect, and six inches erect. So it is a 1 to 3 ratio. So I call it "Stubby" now. I don't plan on any contests and getting my yardstick out anymore. 

There are some other unusual side effects. Like hernias at the incision points, but the skill of the surgeon will minimize all these side effects, except for the shortening.

You can check out other side effects of other treatments by researching them in this forum, but I cannot speak to them since I do not have the experience.I

You may already know all this, but it doesn't hurt to review.

If anybody can add to this, feel free. I haven't said anything that hasn't been said many times in this forum, but it is what I experienced. My side effects were very typical and according to schedule.

mcin777 said:

Ditto

I am 74 and turning 75 in about two months.  I am in good health.  Why would you say it is moot?  The Lord willing I'd like to live into my late 80s or 90s.

 

You misunderstand. I never said you have a "foot in the grave". From what I understand, men over 70 have already experienced the worst of BPH and after 70 symptoms tend to lessen. So it is moot because the prostate BPH symptoms after 70 supposedly won't be getting worse like they can after 50.

However, don't quote me on this. I cannot tell you where I heard this. It could have been WEB MD or it could have been Crazy Larry's Naturopathic Cures And Motor Lubricants. So your urologist knows best, not me. I only know for sure what I experienced.

Hello MK,

Confirming side effects as mentioned, but they depend on age and pre-RP condition, along other things.

(My results were better than noted)

I wouldn't recommend RP without concrete proof that your prostate must go.  I had PSI, Echograph, and biopsy all converging.

Also, worth considering other options and for that you must consult with non-surgeons.