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MRI Result Meltdown

User
Posted 08 Aug 2024 at 18:36

Hi Mike.


I didnt mean to knock the NHS, I was just stating how increasingly under pressure it is. It's interesting to hear the flaws in the American system. I'm glad that you seem to be getting an excellent service.

User
Posted 20 Aug 2024 at 02:24

Hi everyone. So I am now officially sans prostate (and maybe with some luck also sans cancer)!! I don't want to jinx myself here but my wife spoke to the surgeon after the surgery and he supposedly said they achieved clear margins (they check in real time here during the surgery). Left nerve bundle was spared but the majority of the right side was removed (which I fully expected and was discussed beforehand). I am spending the night in the hospital but feel remarkably well. No pain whatsoever except for the occasional slight pinch of the catheter. Going to catch some zzz's now. Will update further down the road. 


 


Thank you again to all of you for your support throughout this. 


 


-Mike

User
Posted 20 Aug 2024 at 07:43

Thanks for the update Mike. I wish you a speedy and smooth recovery. Good luck mate.

User
Posted 20 Aug 2024 at 14:44

That’s Great news! Clear margins 👍🏻


Speedy recovery to you


M

User
Posted 22 Aug 2024 at 18:04

Thank you Adrian & Margot. I was definitely a bit loopy when I posted Monday. It had only been a few hours post surgery when I wrote it. I'm surprised I did and hardly remember doing it! 


Anyway,, I'm home now resting. To clarify a few things now that I'm more clear headed and have spoken to the surgeon directly. To recap, my RP surgery was early Monday afternoon (the 19th) in a hospital on Long Island (NY). I had Retzius sparing, DaVinci radical prostatectomy.  My left nerve bundle was fully spared but the right side was partially removed. As I said in my prior post, my wife had spoken to the surgeon immediately after the surgery and thought he said they spared a third of the right nerve bundle but when I spoke to the surgeon the following morning he said said they REMOVED about a third of the right side sparing the rest which I was quite surprised about. On one hand I'm happy to have more of the nerves in tact but on the other I'm worried that over sparing on what was the heavily infiltrated side may result in leaving cancer behind. Lymph nodes were also removed on both sides (don't know how many though) as a precautionary measure but the surgeon said none of them appeared questionable.


Also, to clarify a bit about the "clear margins". Again, what was checked during the surgery is not a complete tissue analysis. The surgeon told me they freeze and shave off some of the tissue sample during the procedure and send those bits over to the lab. They did in fact come back clear but he said it's not a full 360 degree sample - just some small areas where the greatest concern was to let him know if he needs to cut wider. The real final results won't be known until the histology report comes back. More waiting!! But hey, at least so far, so good.  Another good little tidbit of info he told me was that usually when there is cancer outside the prostate the tissue becomes "sticky" and is more difficult to remove. He said my tissue not only appeared clear but also removed very smoothly and easily the way normal healthy tissue should indicating there may not have been as much cancer outside the prostate as originally thought, but I'm not getting my hopes up yet.


I was supposed to be discharged from the hospital Tuesday morning but ended up having a setback which kept me there an extra day. I was feeling well Tuesday morning and was eager to get out of bed and walk around. I asked my nurse if I could so he helped me out of bed and we started walking around the hospital hallways. I felt great while walking. In fact, when we got back to my room I asked to go for a second lap which we did. When we got back to the room again I was still doing very well so while I was still standing he decided to show me how to properly empty my catheter bag. While I was standing there watching him I suddenly started feeling dizzy and said that I needed to sit down. As I was walking back to the bed I began sweating profusely, became very nauseous, vision began to fade...and bam! Next thing I know I'm flat on the floor with an emergency team of 10 people scrambling over me. The short of it was, I just passed out. But when that happens in a hospital after surgery they make you go through a litany of tests including bloodwork, full exam, EKG, even an echo-cardiogram. The worst part of it for me was it was Tuesday morning and I hadn't had any solid food since the prior Saturday evening (no food Sunday and full colon prep). I was STARVING and wanted to eat soooo bad. You would think they would want you to eat after a fainting episode but nope! They told me no solid for another day and...I'd just earned another night stay! I walked again that night and Wednesday morning without issue so they fed me and tossed me to the curb. So I'm home now.


As far as pain goes, my issues have been  I am extremely bloated (gas pain from anesthesia induced constipation) and surgical pain (internal) on the right side of my abdomin and some catheter discomfort ( more on that subject in a bit). I cannot lay down flat yet because when flat, the stretching of my abdomin while breathing really triggers the right side abdomin pain badly. It feels like muscle pain - almost a knotting sensation. Fortunately I have a comfortable lounge chair which I used last night which wasn't too bad.


Finally, there's the catheter. I HATE IT!! I'm counting down the minutes to removal - 8,640 to go give or take a few. It's not so much pain though I do keep getting the pinching twinges at the tip of my penis despite using the cleaning wipes regularly - ouch. I'm also having consistent issues with the long tube not quite draining properly into the bag. I have to keep maniupulating the tube to get the urine to flow properly. Did anybody else out there experience this? When it backs up it creates pressure in my bladder and makes me feel like I have to pee - but obviously can't. When it's flowing properly I feel fine and there is no urge to pee but the issue is persistent and has been so since Monday. None of the docs or nurses seemed concerned though as long as the urine is making it's way out of me. Oi. 8638 minutes and counting...


So that's my status in case anyone is curious. Thanks again everyone and I will continue to update regularly. I'm also happy to answer any questions for anyone gearing up for RP while I'm in the midst of it all. All in all, despite my moaning and wining, it really hasn't been too bad though. 

User
Posted 22 Aug 2024 at 18:54

Hi Mike.


I'm sorry to hear that the minor hiccups caused a delay in your release, but I'm glad that you are home now. Best of luck mate. 🤞

User
Posted 22 Aug 2024 at 19:50

Hi there 


You did very well indeed to post and so far everything is looking positive. 


You probably did too much for a first walk but at least you are home now! 


My husband hates the catheter and also had same issues and he couldn’t wait to have it removed. 


The first couple of weeks he had some pain and “odd” feeling in the Penis and surgery sites but this eased over time and he just needed to rest more. 


Hopefully the histology will be as good as it can but whatever you are now on the up and hopefully it will become easier .


Take care 


User
Posted 23 Aug 2024 at 08:12

Hi Mike,


Glad it went well for you Mike. Sorry you had a minor setback but perhaps it’s a lesson well learned just to be patient with your recovery. All my friends who have had RARP say the same…if they overdo things one day, they really suffer the day after.


Good luck with your recovery.


Derek

User
Posted 23 Aug 2024 at 08:18
Well done and I bet you are glad it's over.
The fainting is quite normal - it's a message to stop overdoing it - take your time!!!!
As for the catheter tube, ignore the tube - any urine in it will end up in the bag as your kidneys produce - you don't need to manipulate it. Just keep the end nearest the penis 100% sterile - never touch it with fingers - just antiseptic wipes.
You can get a patch that fits to your inner thigh that holds the tube and stops issues with it waggling on the end of the penis - ask your nurse for one.
Keep posting about your progress and best of luck
Steve
User
Posted 23 Aug 2024 at 14:25

Sorry to hear of your issues. One thing about hospitals and catheters you often only get what they have not what is best. In the UK we have at least 3 gels that are designed for catheter insertion and maintenance. They contain, anesthetic, antiseptic and lubricant, in the US they will probably contain liadocaine, a squirt in the eye.of the penis can usually help with discomfort. Make sure the catheter is secured to your leg ,it helps reduce movement and rubbing. I always found/ find a short tube catheter bag is better than long tube bags. I find I drain better when laying down. Make sure you drain you bags before they get to full , perhaps when no more than half to two thirds full. 


Hope the recovery continues to improve.


Thanks Chris 


 

Edited by member 23 Aug 2024 at 14:26  | Reason: Not specified

User
Posted 23 Aug 2024 at 18:00

Hi Decho, Steve and Chris. Was going to respond back in a few but my phone just rang and it was my surgeon calling with my official histology report:


All margins came back CLEAR and NO positive lymph nodes!!!! For the first time in almost 4 months now, I can say YEEEEAAAAHHH BAAAAAABY!!!!!!


I know this doesn't mean I'm out of the woods but hell, compared to the way things were looking a few months ago, I simply couldn't feel any better at the moment.I don't even mind the dang catheter right now!

User
Posted 23 Aug 2024 at 22:25

Originally Posted by: Online Community Member


...In the UK we have at least 3 gels that are designed for catheter insertion and maintenance. They contain, anesthetic, antiseptic and lubricant, in the US they will probably contain liadocaine, a squirt in the eye.of the penis can usually help with discomfort. Make sure the catheter is secured to your leg ,it helps reduce movement and rubbing. I always found/ find a short tube catheter bag is better than long tube bags. I find I drain better when laying down...



 


Yes Chris, I was prescribed Liadocaine gel. Only problem is none of the pharmacies near me have it in stock nor did the hospital have any to send me home with. I have been cleaning the insertion area and tube regularly though with the wipes they give you and those seem to help some. The tube is clipped into a rotating anchor that is patched to my upper right thigh. The tube still pulls a bit though when I move around. Not excrutiating, but I get enough "twinges" that it is definitely limiting my mobility somewhat. 


 


Originally Posted by: Online Community Member


As for the catheter tube, ignore the tube - any urine in it will end up in the bag as your kidneys produce - you don't need to manipulate it. Just keep the end nearest the penis 100% sterile - never touch it with fingers - just antiseptic wipes.



 


Yes, the wipes are great and actually do seem to help a bit with the twinging pain somewhat. As for the tube drainage, though, I disagree about ignoring it. My first night in the hospital in particular, I was up most of the night with a very uncomfortable constant feeling like I had to pee. I figured it was either a side effect of having just had surgery or that perhaps this is what a catheter just feels like. Around 3am a nurse came in to check on me and I mentioned what I was experiencing and she noticed the tube wasn't draining properly. Nothing was clogged. It was just the tube was so long that the way they had the thing hanging from the side of my bed, the tube was going from me down almost to the floor, then back up and hooked back down to go into the bag. You would think that with the bag still being at a lower height than my bladder, gravity would have forced the fluid into the bag, but for whatever reason it wasn't happening. After she manipulated the tube to get it to flow properly, voila!,  no more feeling of urge to pee. Last night, my wife and I jerry-rigged a ridiculous looking (but very effective) set up of boxes in varying heights to create a long, steady sloping decline from the lounge chair I am currently sleeping into the bag and I made it through the night without issue. I'd post a pic so you could have a good laugh, but hey, it worked!


 


Originally Posted by: Online Community Member


Glad it went well for you Mike. Sorry you had a minor setback but perhaps it’s a lesson well learned just to be patient with your recovery. All my friends who have had RARP say the same…if they overdo things one day, they really suffer the day after.



 


Very true - except at this stage for me, my unit of measurement is still in hours, not days yet. I will feel great one moment and walk around a bit, go downstairs (I have a lot of stairs in my house) make a meal, then walk back upstairs and I'm exhausted for an hour or two, then I pick back up again. I'm not worried. I realize this is the very beginning of a long healing process and all in all, I'm already feeling much better than I thought I would at this point. I think I'll feel fantastic once the catheter is out. Ironically though, the catheter is actually helping to prevent me from getting to overactive! I'll have to be extra careful once it comes out. 6912 minutes and counting...


 


 


 

Edited by member 23 Aug 2024 at 22:27  | Reason: Not specified

User
Posted 24 Aug 2024 at 13:17
Hi Mike,

I haven’t been on the forum much recently so I’ve just caught up on your thread.

Really glad you’ve had your surgery and it’s all gone well.

My husband had his op Dec 2021 and it was the same as what you had, the DaVinci robot and the freezing of the prostate and analysis during surgery. He did really well and recovered great from the surgery.
We paid private for his surgery in London as he was initially diagnosed with spread to the lymph nodes and bones and the NHS in Manchester wouldn’t offer surgery. It turned out it wasn’t in his bones and it was just in 1 lymph node of the 14 he had removed. He was put on HT before surgery because of the initial diagnosis so maybe that explained his Gleason score increase from 4+3 to 4+5 or maybe the biopsy just missed the 5’s.

Robs PSA did start to rise 14 months post surgery as we kind of expected but there was no evidence of disease on the PSMA pet scan. He opted for salvage RT with 2 years of HT and has just one more injection to go in February. Then just a waiting game again.

Hope you can get your catheter removed soon and it becomes a bit more bearable for you. Rob had a slight leak still when he went for removal so as a precaution he had it for 4 weeks in total. Luckily he found it ok though and didn’t have too many issues.

Best of luck with everything and wishing you a full and speedy recovery and look forward to seeing positive updates in the future.

Elaine



User
Posted 24 Aug 2024 at 16:26

Hi Elaine,


Sorry to hear of your husband's recurrence and am keeping my fingers crossed for both of you that his salvage treatment kills off whatever pc is left once and for all. I expect I'll need salvage treatment as well at some point due to the aggressiveness of my cancer (4 + 5 as well). I'm at least hoping it holds off for a while though because I really could use a break for a while.


Anyway, I have two questions for you if you don't mind:


1 - You mentioned your husband had some "leak" with regards to the catheter so they made him keep it in longer. I am having some minor blood residue right around the insertion point. A little bit makes its way out around the tube at various points throughout the day. I keep cleaning it with the wipes they gave me. Again, it's very minor and it's not urine, just blood - maybe a drop or two at most. Not sure if it's normal or not. Is this what he was experiencing? 


2 - If I understand correctly, you are saying that at the time of his recurrence,  they couldn't see his cancer on the PET scan? So, how did they go about aiming the radiation treatment? Did they just treat his entire pelvic area or did they make a best guess? Or did he wait until it eventually did show up on a scan? 


 


...5760 minutes to go....

Edited by member 24 Aug 2024 at 16:31  | Reason: Not specified

User
Posted 24 Aug 2024 at 20:09

Yes that’s what we’re hoping. We went through a really difficult time when Rob was first diagnosed like yourselves. I think it’s the not knowing that causes us to have so much fear and anxiety, but now things are very different and we’re pretty positive and enjoying life. I hope that you have found things easier now you’re on the road to recovery. There’s no point in worrying about something that probably won’t ever happen. 


With regards to the catheter, no that wasn’t what he experienced. The only issue that he had was one day it got a bit blocked because of small blood clots and debris….it did eventually sort itself though. Also one time he forgot to close the tap after emptying….while we were in a restaurant 🤦🏻‍♀️🤣 luckily it was a friends restaurant! When he went to have his catheter removed they actually scanned his bladder, I believe this isn’t always common practice though, they weren’t particularly too concerned with the tiny leak (I think the surgeon did a bladder neck reconstruction during surgery) but just kept it in as a precaution.


The negative PSMA pet…..they radiated the whole pelvic area. We went in pretty early with a low PSA so we keep everything crossed that it was successful but could be a couple of years before we know.

User
Posted 25 Aug 2024 at 09:00
Understood regarding the catheter tube - yes, if it has a loop lower than the bag then it will interfere with draining - sorry, didn't pick up on that one :)

If salvage radiotherapy is needed then have a read of my profile - I started it 12 months after my RARP and it finished a couple of months ago - last PSA test was 'undetectable' and I think most that go through it are the same - it seems to be very effective at mopping up anything that remains. I was also G9 - 4+5 from the histology report.
User
Posted 25 Aug 2024 at 11:55

Originally Posted by: Online Community Member


If salvage radiotherapy is needed then have a read of my profile - I started it 12 months after my RARP and it finished a couple of months ago - last PSA test was 'undetectable' and I think most that go through it are the same - it seems to be very effective at mopping up anything that remains. I was also G9 - 4+5 from the histology report.



Hi Steve, could I just ask….did you have SRT without hormone treatment? That’s a fabulous PSA result if so. 
Rob has had 2 years of hormones along side so his last injection is February and then I’m guessing it will be another 12 months or more from that before we find out if the radiotherapy has done it’s job 🤞🏼


Thanks


Elaine

User
Posted 25 Aug 2024 at 13:19

Hi Elaine


No, I started with the Decapatyl injections - 3 monthly ones of which I have now had 2 with the testosterone down to 0.6 - likely that I won't need them any more after my onco consult on Thursday.


I was warned before the SRT that it could take a while for the PSA to start coming down but they did start treatment at 0.19 (post RARP) so it looks as though it has mopped it up nicely.


Has Rob had his SRT yet? I know he hit the 0.2 but I didn't see if he had started it or not.

Edited by member 25 Aug 2024 at 13:23  | Reason: Not specified

User
Posted 25 Aug 2024 at 16:36

Hi Steve. Same question for you that I asked Elaine - Did your SRT cover your entire pelvic region (prostate bed, surrounding tissue & lymph nodes) or did they aim at a specific area? I'm curious what most people do as I can imagine it would be a really tough call as to whether it is better to wait for something to get large enough to be visible and target or just do a single full on one time napalm it all and take no prisoners approach. I'm already beginning to stress about having to make the decision and I'm not even there yet!


 


Also, am I correct to assume that if they radiate (as RP salvage)  the entire pelvic region then you can have no further radiation treatment down the road if it comes back again?


 


...4320 minutes to go...


 


 


 


 

Edited by member 25 Aug 2024 at 16:36  | Reason: Not specified

User
Posted 25 Aug 2024 at 16:51

Originally Posted by: Online Community Member


Hi Elaine


No, I started with the Decapatyl injections - 3 monthly ones of which I have now had 2 with the testosterone down to 0.6 - likely that I won't need them any more after my onco consult on Thursday.


I was warned before the SRT that it could take a while for the PSA to start coming down but they did start treatment at 0.19 (post RARP) so it looks as though it has mopped it up nicely.


Has Rob had his SRT yet? I know he hit the 0.2 but I didn't see if he had started it or not.



 


That’s really good if you’re only having to have 6 months of HT, I know most onco’s want atleast 18 months, or 2 years in our case. I always feel it’s just the HT keeping his PSA undetectable, so I know I’ll be worried when he comes off it when we’ll really know how well the RT has worked.


Yes Rob has had the SRT, he finished 20 fractions in November 2023.


He seems to be managing ok on the HT, had a few setbacks but feel we’re in a better place and just hoping it stays this way for a long time.


Best of luck for you upcoming appointment. 

 
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