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Advice wanted - newby with Gleason 6 AND Chronic Prostatitis....

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Posted 7/18/2019 11:01 PM (GMT 0)
Facing some choices.... just posted a minute ago as maybe the newest member of this elite forum.

I often have significant urinary retention issues tied to chronic prostatitis. Had thought for years that it was BPH, and was even told so by the first Uro doc I wqas seeing for 3 years. Prostate is somewhere between 44 mL and 55 mL depending on whether you believe the ultrasound or my last MRI - MRI said 44mL. Just got my Gleason 6 diagnosis (3+3, 2/16 cores <5%) on 5 July at Mayo in Phoenix. Uro Doc there who did the biopsy suggest active surveillance. Going back next month to discuss that, and what I can do for the never ending prostatitis (some cores were dx'd as acute and chronic prostatitis). Anyway - reading the little bit that I have the last few days, I see a trend where people who get some form of ablation to treat BPH or localized PCa, if they have to go back because of rising PSA levels, for a Salvage radical prostatectomy, the outcomes don't look good.

Part of me is thinking, active surveillance would be great if I had no prostatitis symptoms, but, the PCa diagnosis limits my options to treat the prostatitis - and if I did go that route (treating it), I'd be increasing chances that if I needed a Salvage prostatectomy later - the outcome would be worse than if I just go whole hog now and tell them to remove the prostate.

Thoughts? As a newby... is my line of reasoning flawed? I am open for anyone's opinion or advice.....

Thanks,

G.
AZ

Post Edited (TB2G) : 7/18/2019 5:05:58 PM (GMT-6)

Posted 7/18/2019 11:40 PM (GMT 0)
all good things to discuss with your URO.

The problem with local ablation for PC is that PC is non-focal so hitting it in one place may not get it all. Procedures like TURP or HIFU or some laser treatments can be effective for BPH, but the references I see rarely mentioning them as useful for prostatitis.

as for treating PC, surgery isn't your only option, but with retention issues surgery would be top of the list. However, remember that it's really 'radical prostatectomy' and with RP they do a lot of cutting which comes with its own list of possible side effects you'll want to avoid for as long as possible.

I doubt the list of nasty surgical side effects really changes if you do it now or do it post a local ablation process in a few years, but that's a question for a URO (surgeon) to answer.

Have you explored all the drug treatments for prostatitis? I'd try all the pills they have before thinking about surgery of any kind.

Andrew
Posted 7/19/2019 1:06 AM (GMT 0)
What's IGRT?
Posted 7/19/2019 1:18 AM (GMT 0)
G - The abbreviations here are worse than the military. Take a look at the second sticky note at the top of the home page that has a list of the common ones.

Image Guided Radiation Therapy or Treatment
Posted 7/19/2019 2:29 AM (GMT 0)

Mumbo said...
G - The abbreviations here are worse than the military.

QFT
Posted 7/19/2019 3:17 AM (GMT 0)
we use a lot of TLA (three letter acronyms) , and FLA (four letter acronym ) around here.

sorry about that. Check out the list in the sticky post at the top of the forum. After a few hundred posts you get tired of typing, image guided radiation therapy. There are even days I can't sepll that.
Posted 7/20/2019 4:42 PM (GMT 0)

Mumbo said...
The abbreviations here are worse than the military.

Having spent a fair amount of time in the military, the acronyms here don't come close to the ones in the service, or in the flying business. Another advantage is that our PCa acronyms are much more logical ;-)
Posted 7/20/2019 5:26 PM (GMT 0)

garyi said...

Having spent a fair amount of time in the military, the acronyms here don't come close to the ones in the service, or in the flying business. Another advantage is that our PCa acronyms are much more logical ;-)


Did not mean that literally, the military and other institutions get into the long acronyms whereas the acronyms are just generally 2-4 letter designations here. I have a son in the military and he can go into another language if he gets excited explaining something. Most of the time, he declines to talk about military things since "we would not understand and it takes too long to explain".
Posted 7/22/2019 1:53 PM (GMT 0)
Welcome to the group TB2G. I'd say you came to the right place for advice - the best of which is that you have to find what is right for you. I was in a similar place a year ago, desperately seeking anything other than a prostatectomy that would give the best results (or my opinion of what those would be). Do your research, not just on processes, but also doctors. Guys don't seem to talk about this, but I found that the more open I was, the more others shared with me - particularly the doctors responsible for good outcomes. I ended up with a doc that had been profiled in the local lifestyle magazine multiple times as they regularly featured a section on "top docs." A radically enlarged prostate forced me to come to grips with removal, and I am very happy I did. No more thoughts of future biopsies or other strange objects entering my body as part of active surveillance - and I can pee whenever I want/need to! As I read posts, I know I am lucky to have a good experience - I am pretty darn sure that the doc had a lot to do with it.
Posted 7/22/2019 2:51 PM (GMT 0)
Thank noregrets...

Can I ask how long ago you had yours out? What hospital, and what doctor?

I'll be switching to tricare select from tricare prime in in November - will take effect 1JAN - so I will be able to go anywhere in the country for the procedure once the change is made. That gives me 5 months to figure this out. I may go the same way - we'll see, it is one option.

Thanks.
Posted 7/22/2019 7:22 PM (GMT 0)
Surgery was Oct 24 of 2018 at Emory St Joseph Hospital. Doc was John Patteras, chief of both Urology and Non-Invasive Surgery there, as well as Chair of Urology at Emory University Medical School. Check out my original post - lots of lessons that I learned along the way. It was a 6 1/2 hour surgery, I was walking the next morning and sent home that afternoon. Very quick recovery.
Posted 7/22/2019 8:08 PM (GMT 0)
TB2G: there are experts all over, and you have a relatively uncomplicated case. Not all the true experts are nationally known--they like not being in the spotlight, and let their work speak for them.

I had RALP in St. Louis, MO at Barnes-Jewish in 2015, with Dr. R.S Figenshau. I made trifecta by 6 weeks. No long term side effects.
Posted 7/24/2019 2:33 AM (GMT 0)
Noregrets - I am curious about what pushed you to go for the RARP - was it the PCa alone, or was it that, in combo with the symptoms caused by the BPH? Did you ever consider active surveillance, and was it offered as the primary treatment alternative?

There are times when my chronic prostatitis makes life miserable, but then, there are times when I feel I can go on with it. When I go in next month and speak both to the Uro Doc and the surgeon at Mayo about my situation, I need to see what long term damage prostatitis and urine retention is doing to my plumbing, and that will weigh on whether I decide to go in and have my prostate removed. Also need to look at my Onco DX results, and the 2nd opinion from Epstein.

Thanks,
G
AZ
Posted 7/24/2019 3:03 PM (GMT 0)

NoRegrets said...
Surgery was Oct 24 of 2018 at Emory St Joseph Hospital. Doc was John Patteras, chief of both Urology and Non-Invasive Surgery there, as well as Chair of Urology at Emory University Medical School. Check out my original post - lots of lessons that I learned along the way. It was a 6 1/2 hour surgery, I was walking the next morning and sent home that afternoon. Very quick recovery.

I'm currently going to Emory St. Joseph's as well and am presently following AS. I'm glad to hear your case went well.
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