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Very Disappointed

mcin777
Posts: 66
Joined: Feb 2013

I consulted with a HIFU specialist and because my prostate size is about 2 and a half times the normal size of 40ml (mone is 109ml) I am not a candidate for HIFU.

I have now met with three Urologists and they are all concerned that I do something NOW.   I have a Left lateral inferior abnormality consistent with tumor, possibly with focal ncapsular disruption. PI-RADS 5.  Seminal Vesicles: Normal. There are no findings of adenopathy. Pelvic bone marrow signal is normal.  The biopsy did not find any cancer with the area classified by the MRI as PI-RADS 5.  However all the Urologists think that the biopsy missed the cancer and that i am at a high risk of the cancer leaving the prostate.

Your prayers will be appreciated as I move foward with RP which I did not want nor did I want any other type of treatment.  My hope is Jesus but my desire for treatment was HIFU.

Jim

 

 

hopeful and opt...
Posts: 2218
Joined: Apr 2009

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

Swingshiftworker
Posts: 1013
Joined: Mar 2010

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

CowboyBob
Posts: 31
Joined: Oct 2013

Although you have abnormal imaging studies, I believe you need a diagnosis before you decide on a course of therapy. I certainly would not even consider a radical prostatectomy without a tissue diagnosis. Have you doctors suggested a image guided biopsy to confirm the diagnosis? 

mcin777
Posts: 66
Joined: Feb 2013

By diagnosis, do you mean have I been told I have prostate cancer?  Not sure what you mean.  I had a fusion guided biopsy.  The MRI findings (at least in one area) did not agree with the  biopsy.  MRI said Left lateral inferior abnormality consistent with tumor, possibly with focal capsular disruption. PI-RADS 5.  The biopsy said no cancer there.  Go figure.  I am learning that all tests leave big unanswered questions with there findings.

Grinder
Posts: 437
Joined: Mar 2017

Not sure why ultrasound is your preferred treatment. I strongly suggest you enter in key words from various treatments, including HIFU, into the search engine of this forum and read up on the many instances, both successful and not so, for the various treatments available before settling on one procedure in particular. 

Also, how severe are your BPH symptoms? Could they get worse? Maybe that is why the urologist is suggesting RP because it will also cure your BPH permanently. But do read up on this treasure trove of information, if you haven't already.

mcin777
Posts: 66
Joined: Feb 2013

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

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

Grinder
Posts: 437
Joined: Mar 2017

What he said^.

You have been on here since 2013... How old are you? BPH is not a stable condition, but can fluctuate wildly. My first prostate issues began in 2003 at age 50. Prostatitis and BPH caused inflammation and enlargement. It may be possible depending on your age that you have not yet seen the worst of your BPH symptoms. Or maybe you have. If you haven't and you decide against RP, you may be stuck like I was eventually, taking 5mg Cialis in the morning and Flomax in the evening just to keep the plumbing from shutting down completely. Either way, I would enquire with the urologist (or several) what to expect in the future and not just assume that this is the worst of your BPH enlargement. Just my opinion.

All this is moot if you are over 75 or so.

mcin777
Posts: 66
Joined: Feb 2013

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.

 

Grinder
Posts: 437
Joined: Mar 2017

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.

Grinder
Posts: 437
Joined: Mar 2017

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.

MK1965
Posts: 162
Joined: Jun 2016

As for what I see and understand, you are not diagnosed with prostate Ca.

You had MRI and fusion biopsy which also sampled PIRAD5 area multiple cores. So, no cancer.

In that scenario, best would be to stay in AS if I would be in your shoes. Hi PIRD score might be influenced by multiple calcifications in one area which are most likely calcium deposits or inflamation  scars.

Being under medical care and followed regularly does not mean you will miss your windows of opportunity.

As you already mentioned about surgery and radiation as not your preferred choice for which I agree especially for surgery which always comes packed with terrible and long lasting and debilitating SE and when HIFU doc see a problem in prostate size, for me to continue with AS would be still the best part until really treatment becomes nonavoidable.

MK

LifePart2
Posts: 3
Joined: Feb 2018

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.

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