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MRI Result Meltdown

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 …! ðŸĨģ

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.ðŸĪŠ

 

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

User
Posted 14 Jan 2025 at 03:17

Hi all. Quick update. Just got my 2nd PSA test result back ( from Jan 7 ) and still undetectable ( < 0.02 ). I was a little worried as my test was early in the morning and I realized when I got to the doctor's office that I was rather dehydrated. So much so that they actually had trouble getting blood out of me. I thought this might somehow lead to a "concentrated" build up of what little psa my body still produces. But, apparently it didn't, so a little breather for another 3 months...

User
Posted 14 Jan 2025 at 04:00

Happy Days Mike, onwards and downwards(PSA)👏👏👏

User
Posted 14 Jan 2025 at 06:40

Fantastic result mate. Keep those less than arrows flying <<<<<<<<<<<<<<<<, and please keep updating us. ðŸ‘

 
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