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G9 - Urinary retention may rule out planned triple play (HT + IMRT + LDR Brachy)

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Posted 6/30/2018 3:44 AM (GMT 0)
Well, I had my uriflow and retention test today and then conversation with a nurse practitioner (NP). Flow was ok (500 mL with score of "20"), but I had 300 mL retained afterwards and I tried to go again in 25 minutes and got nothing more out. Before starting Flomax 8 weeks ago, definitely had a lot more urinary flow issues(weak flow, and wanting to go frequently).

NP suggested that I need to give RP some serious consideration because radiation is going to "lock in" where I'm at best -- i.e. it's not going to get any better and could get worse.

He prescribed daily 5 mg of Cialis and then repeat the uriflow test in a week and see where I am at.

I'm also scheduled to see the RO in 2 1/2 weeks (he's the one that wanted the uriflow and retention test), but I'll try to see if I can move that up at all. If I do decide on surgery, they are scheduling about 4 to 5 weeks out -- not good because I'm anxious to begin treatment beyond Lupron since getting the G9 second opinion.

Right now, the uncertainty and the burden of making a treatment decision is much worse than any current issues with the cancer itself -- though this uncertainty I guess is indeed an issue of the cancer.

My thinking in wanting the triple play was that it offered greater probability of remaining cancer free post treatment (i.e. occurrence) and bypassed any possible RP side effects. Also, with RP, I'm highly likely looking at surgery + pelvic radiation + ADT.

So, I guess I have to wait to see how the repeat test goes, and then see what the RO says, i.e. what plan he would offer. The plus I guess of surgery is getting the full pathology post RP, and a rebuilt urinary tract -- but the risk of surgery SE (don't care about ED, do care about continence).

It's never easy -- but I keep telling myself one day at a time and that God doesn't give us more than we can handle. But hopefully this is the third an last downer(first "you have cancer", second "it's G9, not G8", and now triple play may be off the table).

Battle on!
Posted 6/30/2018 3:32 PM (GMT 0)
Sorry to hear this and hope you have better results next week. As a triple play guy myself, I would say that I have a decreased urine flow afterwards, but it's not that bad and I only need to take one Rapaflo every 3-4 days to be normal. But I was also starting from a better baseline.

Regarding your last sentence, I know exactly how you feel. I was expected to be told I had cancer, but I wasn't expecting G8. And then I got upgraded to G9 as well! I hope you can still work out the triple play somehow.
Posted 6/30/2018 4:24 PM (GMT 0)
Good luck with sorting out the Triple Play. Another member here, Artist Mark, detailed his journey with having to change his planned Triple Play treatment due to urinary issues as well. It might be worth searching for his posts for more information on his experience and what he worked out instead.

The "bad news keeps coming" unfortunately is something I know too well as well. First I got the call that my biopsy had found cancer but the PA who called me said "it is cancer but hopefully a low grade that can be easily cured". Then the Uro called me a couple of days later to inform me it was Gleason 9 but when I met with the Uro and an RO a couple of days later they were very optimistic that even with G9, surgery or radiation would take care of it since it appeared contained to the prostate. A couple of days later my CATscan results came back with a "suspicious, slightly enlarged lymph node". The doctor said, "nothing to worry about, so small likely not cancer in the node". Several days later, the doctor called me to say the biopsy of the lymph node was positive for cancer. It was like repeatedly being hit over the head with a hammer for a month. Hang in there though, in the end, you'll have a plan of attack and feel much better and confident that you are doing what needs to be done.
Posted 6/30/2018 5:53 PM (GMT 0)
CDR,

Your journey seems to be following mine in the early days, that's for sure. The one difference is that I was deemed not suitable for RP before I chose Triple play. I know how you feel. Getting to the point of a treatment decision and then having it change is difficult. For me...even though RP was taken off the table, in hind sight I'm glad I didn't go that rout. (IMHO) I've seen too many G9 guys go through RP and end up with SRT and double the SE. My primary treatment was ADT+IMRT with full pelvic RT. Another member here also a G9 with similar Dx as mine is Redwing57. He had primary ADT2+IMRT. His ADT2 went for 3 years and he is doing quite well and he is about 6 years out.
The other option if you can't have Brachy and your cancer is "contained" would be chemo. After having Brachy taken off the table for me, leaving only IMRT+ADT my research found that the NCCN guidelines show that if you are a high risk and your PC is determined to be contained then you would qualify for adjuvant Docetaxel treatment. That is what I did. So I feel I eventually ended up with a triple play treatment. This could be an option for you if you decide to go primary IMRT+ADT.


You are at a tough spot right now in your journey with all the detours and unknowns,but you still have good options that will give you a good chance at a possible cure. I know exactly what you are feeling. Try and hang in there.


What helps me is knowing that even if I do end up with recurrence (and the odds are I might), there are many things down the line that can keep me going for a long, long time. I have come to accept the fact that I didn't get the best of Dx's and that my life will never be the same. I may very well be dealing with some type of treatment for the rest of my life. I like to follow members here that have the same lousy Dx as I. Even those that have it much worse than I.The guys that are living with this thing and having a life. Is it the life I imagined for myself before Dx? No.... it isn't... but it is what I have and I am trying to learn that I can do this and still enjoy life for many many years. You are going to get through this and will be looking back at your treatment just as I am now before you know it. The doom and gloom of this thing fades away as you go along. We do get through this much better than guys in the past and the further we go the better the treatments and better the medications that are coming out.


I hope I have helped you even if just a bit.


Battle On Brothers!


The Artistic One -Mark
Posted 6/30/2018 8:55 PM (GMT 0)
Going into this, I had an enlarged prostate over 60cc, with urinary retention problems. I almost had to go to the ER just from the biopsy. So two things that initially made me look like I was a not a good candidate for that type of treatment. (triple play)

The urinary retention was from more than just an enlarged prostate. I also had a growth blocking the urethra. The initial external beam and ADT shrunk the prostate down to the 20's, but the "nub" or growth was still a problem. So, I had to have a green light laser prior to brachy.

I had no idea this was even a possibility. It all worked out fine. According to my RO, it's not that uncommon. Creative thinking and experience i guess. That enlarged bit of prostate tissue had been causing retention and frequent urination problems for years.

Find out what is causing the underlying issue and your treatment of choice may still be option with the proper approach.
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