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MRI Result Meltdown

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. 

User
Posted 25 Aug 2024 at 17:01

Originally Posted by: Online Community Member

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?


From what I’ve read Mike SRT seems to be more effective if you go in early with low PSA, that’s what helped our decision not to wait until something was visible.

As far as I’m aware Rob has had his lifetime dose, I believe if it metastasised to somewhere he hadn’t had RT though he could have a more targeted RT to that area.

There really is no reason at all why you should ever need it though.
I think it helps if you know it’s possible then it doesn’t come as much of a shock as the first time around, but being positive is so important also 👍

 

 

 

 

User
Posted 28 Aug 2024 at 19:59

Hello all! Time for another update. I have good news, better news, and unbelievably, crazy FANTASTIC news!!

 

The good news: Catheter is out and I feel like a new man! 

 

The even better news. It's been nearly 3 hours since it was removed and I haven't leaked a drop yet (and I drank a lot of water beforehand)! My wife and I stopped at a CostCo on the way home and we walked around in there for a while. No problems whatsoever! I'm wearing a pull-ups right now just in case the flood gates suddenly open but I feel like I have good control and believe I can switch to a pad very shortly.

 

Now for the CRAZY GOOD news: So as I mentioned in a previous post, my surgeon had called me last Friday with my histology report and basically just said it was clear - negative margins and no lymphnode involvement (which by the way I now know I had 18 removed). But I never asked about my Gleason score as I figured if anything it probably would have been upgraded from the 4 + 5 my biopsy had put me at and didn't really want to know. Well, today after removing the catheter they went over my histology report in full detail and turns out I'VE BEEN DOWNGRADED!!!! The histology report put me at 4 + 3!! I don't even understand how that's possible because the biopsy did pull a very small amount of G5 out but I guess it was too small to count?? It also has no mention of Cribriform pattern either?? So I'm not sure which report to believe but I sure like this one better!!! Yeah baby!!!!

Edited by member 28 Aug 2024 at 20:04  | Reason: Not specified

User
Posted 28 Aug 2024 at 20:29

Fabulous news Mike, long may it continue. I'll have pint of Stella to toast your good fortune.

User
Posted 28 Aug 2024 at 20:37

MM , great news all round. Long may it continue.

Thanks Chris 

User
Posted 29 Aug 2024 at 11:17

Originally Posted by: Online Community Member

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?

It was targeted at the prostate bed based on a map that the onco had created based on a pre-treatment scan.

I'm meeting him in an hour so will ask whether further RT is possible in the future if it is needed.

User
Posted 29 Aug 2024 at 12:42

So pleased for you 🙏

User
Posted 29 Aug 2024 at 13:55
So just met the onco - officially I am cancer free at this time and I have been taken off the HT woohoo

I have my next PSA test planned for 1 year after the end of SRT and the threshold for any further intervention has been set at 2. Further RT is possible depending on what develops but the onco suggested that most people don't see anything for 10 years although it could be possible 2-4 years depending on how it grew and was treated.

I'll certainly be enjoying my holiday that starts on Sunday :)

User
Posted 29 Aug 2024 at 14:52

Originally Posted by: Online Community Member
So just met the onco - officially I am cancer free at this time and I have been taken off the HT woohoo

 

That's great news Steve! Sending you a long distance high five, brother. I just scheduled my first PSA test for Oct. 3rd. Back to the waiting game...but I'm definitely feeling better about this stuff now so the wait should be easier.  I think I'm ready to start viewing my cancer as the annoying passenger in the back seat and focus rather, on the road ahead. Cheers.

 

-Mike

User
Posted 29 Aug 2024 at 23:35

Amazing news, Steve!  You and your family must be over the moon! We’re just at the beginning of our journey, waiting for my husband’s biopsy results, so it is very reassuring to read your news today. Onwards and upwards for you …! 🥳

User
Posted 30 Aug 2024 at 08:06

Great news Steve! I'm thrilled for you. But don't leave us mate and keep posting. Good luck in the future.

User
Posted 30 Aug 2024 at 08:23
Thanks all - sorry I didn't mean to hijack the thread LOL

No intention of leaving as hopefully we all add a bit more knowledge and experience to the forum that may, in some way, help those that are just starting their journey. I was one of the lucky ones and 4 years from start to finish ended in a really good result. I know some haven't been so fortunate and of course re-occurrence is a possibility in 5-10 years time - but it does show that this bloody disease can be cured for the time being, even if the initial surgery isn't a 100% success.

Of course, earlier detection would have prevented a lot of this - mainly Covid but also down to me not getting tested - so let's keep telling every man over 50 we meet to get his PSA tested (yes, it makes a weird conversation starter in the pub hahaha).

User
Posted 08 Sep 2024 at 22:07

Hi all. I thought I'd post another update now that I am 3 weeks post RP surgery (as of tomorrow). I'm happy to report that overall, I'm doing really well and am glad I went through with it. 

Here's where I'm at by category to make it a bit easier to read since this is so long:

Pain - I still have a few minor aches but nothing major. I generally feel good. The lower portion of my abdomen still feels a bit "tight" and the right side where the larger removal incision is, is still slightly tender but not bad. No need for any pain meds. On a slightly more concerning note, I've been having on and off pain up inside my rectum since the surgery. It's a dull pain but it can be intense at times for a brief second or two. It's always very short lived - like a pinched nerve type pain. Happens sometimes when I sit or strain for any reason, particularly when on the toilet. I don't think my rectum was damaged per se, but maybe got a bit bruised (??) during surgery being it was next door neighbors with my prostate. I Googled "rectum pain after prostate surgery" and apparently it's not uncommon although I don't think I've seen anyone mention it here? I'm curious if any other RP folks around here experienced this during healing? Like I said, it comes and goes so I'm not overly worried at this point. Hopefully it will fade with time.

 

Incontinence - Almost none! For the most part, I feel like I have excellent control. I can sit, stand, walk, climb stairs, laugh, sneeze, sleep and stay completely dry. However, if I push or strain (i.e., when passing wind) there's a good chance there will be rain in the forecast. That seems to be my only trigger though, and as I am becoming more conscious of this, I am becoming more careful of how, when and where I "relieve" myself which all in all is keeping me nearly 100% dry. In fact, during the day, when I'm around the house I'm not even using pads anymore. My surgery was "Retzius sparing" (which I still don't entirely know what that means) but my surgeon said that it would help me get dry quicker. Looks like he delivered. I am also doing Kegel exercises (with Squeezy app) 3 times a day and was also doing them for about 5 or 6 weeks prior to surgery. 

 

Urination - I'm making it a topic because it seems a bit different post surgery (at least for me). Not worse. Not better. But...Before surgery, when it was time to go, I would stand at the toilet, let go, and it would take a few seconds maybe before I would begin to urinate. Almost like I could feel the pee making its way through the pipes so to speak before exiting. Now, I let go and BAM! It happens almost immediately. It's like they installed "Insti-flow" inside me. This ties into why I leak a little if I strain. Speaking of flow, that part is improved over pre-surgery. Strong stream and no start and stop action anymore. I guess I can pee more efficiently now, but it happens so fast that sometimes when I'm done, I feel almost like I should have to go more even though I don't. At times I'm not sure if I'm fully emptying my bladder or not. On a separate note, I should also mention that I continue to have "nocturia" (getting up in the middle of the night to go) as I did prior to surgery. I had hoped this would go away with the prostate being removed but it hasn't. I'm still getting up roughly every 2 hours at night. I plan on bringing it up to my urologist at my next appointment.

 

Erections - Good news here. Very, VERY happy in this area! The equipment still works!!! I guess I'm one of the lucky ones?? Even though part of my right side nerve bundle was removed (~30%), I can still stand at attention when called into action! Sometimes it does seem to take ever so slightly more effort to get there than pre-surgery, but I can still get a completely 100% full erection and maintain it until the job is done. I'm also getting morning salutes most days (same as pre-surgery) which I know is a normal and healthy sign of good blood flow.  My doc did prescribe Cialis (5mg) when my catheter was removed to use daily but I haven't been using it. I took one the first day after catheter removal because I just assumed I would need it but I didn't like the way it made me feel. I just felt a bit off-kilter for the better part of the day but turns out I don't actually need the stuff anyway. Therefore, I'll stick with good old fashioned physical therapy instead... :)

 

Orgasms - I'm bringing this up because this is something I was concerned about going into surgery. I'd read mixed things online. Some men claim to have lost all ability to orgasm (anorgasmia). Others state weak orgasms. Some say no different, while others say it's even more intense than pre-surgery. So where would I end up? Well, it's still early but I have taken a few swings at bat already (only solo missions) and have had mixed results so far. My very first one was disappointingly weak, but I was also nervous trying the first time because I feared that climaxing might hurt being early in the healing process. Fortunately, it did not hurt at all but was definitely weak in that the "spasm" (normally fluid pumping) part seemed lacking in intensity. The pumping feeling was there and lasted the normal (pre-surgery) length in time, but it just felt "soft" if you will. Hmmm...let me try to put it like this... Normally (pre-surgery) each individual "spasm" or "squeeze" would (should) feel like the firm handshake you would get from a large statured bulldog CEO that wants to intimidate you. Instead, each felt more like the half-assed soft squeeze you would get from a young nervous-nelly intern on their first day. I think that's because there was no fluid being pumped out anymore :(. Then in subsequent wromps, things changed a bit. Maybe for the weirder... A couple of times now, I've experienced "climacturia" during orgasm, in which I did get to experience the pumping out of fluid (and a healthy amount of it) - except it was urine! And when I say I pumped it out, I damn near hit the ceiling on one occasion!! The thing about it though is THOSE orgasms felt AMAZING! I don't know what to think about this. On one hand, when it happens, well.. it's gross, on the other it feels like I'm back to normal. I wonder what other folks out there who have experienced this thought of it and how best to handle it with your OH. I've been holding off with mine temporarily as I re-aquaint myself - with myself first. I think I'm going to need some industrial strength condoms.🤪

 

Energy - Still down a bit but improving steadily. Before surgery I was very physically active. I was doing medium level weightlifting four times a week and also running 2.5 - 3 miles four times a week as well. Obviously, I'm not doing any of that now and won't even start early training again for another few weeks (doctor's orders). First week home with catheter in, I wasn't even walking much as I found the catheter excruciating. Once the catheter came out things starting improving quickly. I started going for short walks (less than 1 mile) in both the morning and evening and steadily increasing in length each day. This morning I walked over 2.5 miles in one shot. My energy does seem to drop a bit in the afternoon so I've been taking afternoon naps for about an hour most days though yesterday and today I didn't need it. I worked from home last week full time (minus those naps) and am heading back into the office tomorrow part time for this week.

 

I believe that covers everything. Again, overall I am feeling well and am very happy with my results so far. I don't think I could ask for much better. My first post-op PSA test is scheduled for October 3rd. Fingers crossed...

Edited by member 08 Sep 2024 at 22:08  | Reason: Not specified

User
Posted 08 Sep 2024 at 22:38

Mike

Although I'm green with envy, I'm so pleased that you are making such a remarkable recovery. Long may it continue!

User
Posted 10 Oct 2024 at 13:14

Hi again. Been a while. I just got my first post surgery PSA test results back and it came in at <0.02. I'm pleased to say the least!

User
Posted 10 Oct 2024 at 13:27

Great result mate, very pleased for you. 👍

User
Posted 10 Oct 2024 at 15:10

Nice one mate!

User
Posted 10 Oct 2024 at 15:25

Great result, so pleased for you and good luck with your recovery.

Derek

 
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