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MRI Result Meltdown

User
Posted 22 May 2024 at 21:31

Hi all. This is my first post. I’m 51 years old, in good health otherwise, but have recently been diagnosed following an elevated PSA result (12.7) at a routine physical exam. I knew that number was bad but I felt that even with the strong likelihood of it being cancer, I thought that the MRI would hopefully show things weren’t too far along.

 

Well, I just got my MRI results back and I’m now fearing that I am in fact…”that far along”. I’ll spare you from a long dissertation of all the emotions my wife and I are currently experiencing, but to say the least, my head is spinning and is lurking in the darkest of places. I haven’t been biopsied yet, but below is the core excerpt from my MRI report (beneath that is some more ranting by me (sorry) and some questions:

------------------------------------------------------------------
FINDINGS

PROSTATE GLAND: Prostate gland with volume of 20 cc.

There is a large T2 hypointense lesion involving the right posterior base peripheral zone measuring up to 0.7 x 1.8 cm (image 15 of axial T2). The lesion demonstrates prominent focal restricted diffusion with low ADC and early focal enhancement. There are areas of gross extra prostatic extension, most notable along the right posterolateral border.

T2 PI-RADS score: 5
DWI PI-RADS score: 5
DCE PI-RADS score: Positive  

No other suspicious lesion identified. Unremarkable transition zone without appreciable benign prostatic hypertrophy

SEMINAL VESICLES: Unremarkable.

URINARY BLADDER: Unremarkable.

LYMPH NODES: Unremarkable.

VESSELS: Unremarkable.

BOWEL: Unremarkable.

FREE FLUID: None.

SOFT TISSUES: Unremarkable.

BONES:  Unremarkable.

IMPRESSION:
1.  0.7 x 1.8 cm lesion in the right posterior base peripheral zone with extraprostatic extension, suspicious for significant prostate cancer: PI-RADS 5 -  Very high (clinically significant cancer is highly likely to be present).
2.  No seminal vesicle invasion, pelvic lymphadenopathy, or suspicious osseous lesion.

-------------------------------------------------------------------------------------------------

 

The things that are really freaking me out big time right now is

  • The size of the lesion (1.8cm x 0.7cm – that’s huge, isn’t it?) How big were your lesions??
  • and worse…the mention of “areas of gross extra prostatic extension” – To me, that sounds like this thing has already EXPLODED out of the prostate which I feel despite the other tissues currently being labeled as “unremarkable”, metastesis must surely already be taking place, even if it’s at the micro level.
  • Also, what does it mean that it’s a “T2” lesion? Does that have anything to do w/ staging at this point?

My biopsy will be in the next 2 – 3 weeks. Then, probably another 2 weeks to get those results (which I’m dreading), then probably bonescan plus whatever other barrage of tests are required. I feel like by the time I do begin treatment however many months from now, more serious spread will have occurred.

 

Sorry for being so negative. I admit I tend to be a “glass is half empty” kind of guy and right now I’m feeling like the glass is “full of poison”. Is there any positivity here? I could sure use some.

 

 

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 May 2024 at 01:26

Originally Posted by: Online Community Member
people will respond to you but it’s late and I know how you must be feeling so wanted to respond.

Margot, how thoughtful and caring of you, to find time to respond to Mike, when you going through difficult times yourself. It's that sort of spirit that makes this place the jewel that it is. 👏

User
Posted 23 May 2024 at 23:46

Miguel,

TRUS is literally a trans rectal ultra-sound probe, so it's guided by ultrasound.

A template biopsy is also semi-descriptive in that it's a sampling system that works on a grid system and takes a large number of samples, up to about 50. It's done with a general anaesthetic.

I've had a general for both removal of wisdom teeth and a template biopsy. The teeth one was horrible, the template biopsy was fine.

If you have a template biopsy [not sure if this applies to TRUS] you'll pee blood for a week, or maybe a bit longer, afterwards. This is alarming but harmless.

As for the time when you might get to choose your treatment, it seems to be a natural tendency to go for RP but just hold your horses on this one and see how things pan out.

 

Jules

User
Posted 27 Jun 2024 at 17:04

Hello again mate.

I'm sorry that your biopsy results aren't as good as we hoped for. I fully understand how upsetting it is for you and your wife. My heart goes out to you both.

I know how difficult it is to be positive, but it isn't the end of the world mate.  As I said, after my op my Gleason was upgraded to 9 (4+5) and T3a EPE. The surgeon also removed the seminal vesicles, 9 lymph nodes and some other tissue around the EPE, they all came back clear. Nearly 17 months later and my PSA is still undetectable. There are several others who had a similar Gleason and staging to me, who are also now apparently cancer free.

Best of luck with your next consultation.

Edited by member 27 Jun 2024 at 17:07  | Reason: Typo

User
Posted 01 Aug 2024 at 17:03

Hello friends. Time for an update. On July 8th, I met with a very well respected and experienced urologic oncologist surgeon (operates 2 days a week, 300+ robotic surgeries per year!) to go over my case with him and get his thoughts on a treatment plan. He STRONGLY urged me to have surgery as opposed to radiation providing results of a PSMA PET scan (which he prescribed) prove negative for any nodal involvement or other metastatic spread. In fact, later that same day, the hospital phoned me with a surgery date of September 4th (pending results of the PET scan). I accepted the surgery date just to keep things moving along but also scheduled an appointment with the same hospital's radiologist (Aug. 6th) as I want to get both opinions before making my final decision.

This past Tuesday (July 30th), I had my PSMA PET scan. Given my high gleason (4+5) and visible EPE (on MRI), I was soooooooooooooooo scared of what the results would be. My hospital has a patient portal that all test results are posted on immediately when received. Yesterday, I received a text message that the results had been posted. My hands were shaking so bad I had a hard time entering my login credentials to view the report. THANK GOD, the results were negative for any evidence of any nodal involvement or other metastastic spread. Finally, a touch of good news! Surgeon confirmed the results as well. I have also received medical clearance from my primary care doctor to have surgery AND the hospital has now bumped the surgery date forward to August 19th. Oi! So now, after three months of waiting, fearing, waiting, stressing, more waiting... now it feels like the sh*t is hitting the fan!!  

Next Tuesday (Aug 6th), I have a morning appointment with the surgeon to go over any final questions / concerns I may have about the surgery. Then, that same afternoon I have an appointment with the radiologist to discuss HTRT either instead of, or in conjunction with surgery. Again, Oi!!! Then it's decision time.

I am NOT looking for any advice as to which route to take. I am merely posting this as an update to my thread. This is my decision. I've done my homework on this and have my thoughts. I want the prostate out as I am genetically predisposed to producing prostate cancer and feel that radiation alone, at best, would only be a temporary fix. Plus, G4 cribriform (which I have) is known to be somewhat radiation resistant. However, I do recognize that in my case, surgery is likely to leave some cancer behind so I plan to push (now) for adjuvant HTRT therapy afterwards. I mentioned this to the surgeon when I met with him on the 8th and while he wasn't so much gung-ho on adjuvant therapy he did say "early salvage" treatment was an option which he defined as either a post surgical outcome having any positive surgical margin or 1st PSA score any higher then "undetectable". In that case, the HT would start immediately to prevent spread while allowing me to heal, then get on with the RT once my body is ready. I think we are close enough on the same page on this. Now the question is, will the radiologist tell me any different? If he's on board with this approach, then that is the plan. If he should point out that surgery for any reason makes future radiation treatment any more difficult, less effective or limits it in any way, that could be a game changer. Once again, oi. At least I have a weekend first to try and calm my nerves a bit. I think I'm going to prescribe myself a drink or two...

User
Posted 22 May 2024 at 21:31

Hi all. This is my first post. I’m 51 years old, in good health otherwise, but have recently been diagnosed following an elevated PSA result (12.7) at a routine physical exam. I knew that number was bad but I felt that even with the strong likelihood of it being cancer, I thought that the MRI would hopefully show things weren’t too far along.

 

Well, I just got my MRI results back and I’m now fearing that I am in fact…”that far along”. I’ll spare you from a long dissertation of all the emotions my wife and I are currently experiencing, but to say the least, my head is spinning and is lurking in the darkest of places. I haven’t been biopsied yet, but below is the core excerpt from my MRI report (beneath that is some more ranting by me (sorry) and some questions:

------------------------------------------------------------------
FINDINGS

PROSTATE GLAND: Prostate gland with volume of 20 cc.

There is a large T2 hypointense lesion involving the right posterior base peripheral zone measuring up to 0.7 x 1.8 cm (image 15 of axial T2). The lesion demonstrates prominent focal restricted diffusion with low ADC and early focal enhancement. There are areas of gross extra prostatic extension, most notable along the right posterolateral border.

T2 PI-RADS score: 5
DWI PI-RADS score: 5
DCE PI-RADS score: Positive  

No other suspicious lesion identified. Unremarkable transition zone without appreciable benign prostatic hypertrophy

SEMINAL VESICLES: Unremarkable.

URINARY BLADDER: Unremarkable.

LYMPH NODES: Unremarkable.

VESSELS: Unremarkable.

BOWEL: Unremarkable.

FREE FLUID: None.

SOFT TISSUES: Unremarkable.

BONES:  Unremarkable.

IMPRESSION:
1.  0.7 x 1.8 cm lesion in the right posterior base peripheral zone with extraprostatic extension, suspicious for significant prostate cancer: PI-RADS 5 -  Very high (clinically significant cancer is highly likely to be present).
2.  No seminal vesicle invasion, pelvic lymphadenopathy, or suspicious osseous lesion.

-------------------------------------------------------------------------------------------------

 

The things that are really freaking me out big time right now is

  • The size of the lesion (1.8cm x 0.7cm – that’s huge, isn’t it?) How big were your lesions??
  • and worse…the mention of “areas of gross extra prostatic extension” – To me, that sounds like this thing has already EXPLODED out of the prostate which I feel despite the other tissues currently being labeled as “unremarkable”, metastesis must surely already be taking place, even if it’s at the micro level.
  • Also, what does it mean that it’s a “T2” lesion? Does that have anything to do w/ staging at this point?

My biopsy will be in the next 2 – 3 weeks. Then, probably another 2 weeks to get those results (which I’m dreading), then probably bonescan plus whatever other barrage of tests are required. I feel like by the time I do begin treatment however many months from now, more serious spread will have occurred.

 

Sorry for being so negative. I admit I tend to be a “glass is half empty” kind of guy and right now I’m feeling like the glass is “full of poison”. Is there any positivity here? I could sure use some.

 

 

User
Posted 22 May 2024 at 22:40

Hi There 

We (myself and my husband) are just a little way down the line from you in that no treatment has taken place but tests and results have! 

it is a very similar story to yours.
My husband is 58 and had a routine check up and bam PSA raised and MPMRI ordered 

MRI showed PIRADS 5 16mm mid left posterior lesion no nodes seem to be involved 

He had a biopsy 6 out of 12 cores positive Gleason 9 4+5 

his bone scan was thankfully clear

not the news we had expected and we were in meltdown. 

Your MRI shows it’s probably cancer but as yet you don’t know if it is low Intermediate or high grade 

I know how hard it is with the waiting but I can honestly say that the advice and information and kindness of this forum is the place to be. 
I googled everything and to be honest I think half of it was wrong out of date or misunderstood by myself. 

when we went to Christie’s the other day to discuss treatments we were given much hope of curative treatments and also realised after speaking to the specialist nurse that most PC is not diagnosed as metastatic initially ( I know some are) and she also said that my husbands tumour did not represent that much overall cancer in the prostate as it was just one lesion. (like yours)
So although I am very new to this and I can’t offer you a lot I can say try your best not to jump ahead to the worst scenario as more than likely it won’t be and also that there are so many good treatments even if you end up like my husband with a high Gleeson score, which I hope you don’t. 

I know the lovely more knowledgeable people will respond to you but it’s late and I know how you must be feeling so wanted to respond. 

User
Posted 23 May 2024 at 00:55

Hi Mike.

I'm sorry that you've had to join us but I'm glad you have. Welcome to the forum. 

As your reports states Pi-Rads 5 means its very likely cancer. However, only a biopsy can confirm that it is, and if so, what Gleason score it is.

There was a chap on here recently who had a similar scan to yours and it transpired that the tumour was benign. 

As far as I'm aware the T2 on the MRI relates to weight of the imaging not to the cancer stage. However, on my MRI report, they did give me a provisional radiological staging.

Is there not one on your report and what's your PSA?

Even if you're like me, and unlucky enough to have a high Gleason score and extra prostatic extension, it's not the end of the world, it's still curable. I had a prostatectomy 16 months ago and there is now no detectable PSA. 

The only advice I can give is take things one step at a time and try not focus on ifs or maybes. As for your head spinning and being in the darkest places, that natural mate, we've all felt that way, but it passes.

Please keep us updated we will do our best to support you.

 

Edited by member 23 May 2024 at 01:16  | Reason: Typo

User
Posted 23 May 2024 at 02:55

Hi Adrian. I'm glad to hear you are doing well now. That gives me hope. My PSA was measured at 12.7 on April 30th. There was no staging info on the report. I posted the entire report minus the technical jargon at the beginning regarding the type of equipment used (3T etc... with and without contrast blah blah...) and the radiologist signature. I thought the staging comes from a combination of the MRI and biopsy? BTW, when they biopsy, do they just biopsy the prostate or do they also do any of the surrounding areas like seminal vessels etc?

I guess what's really worrying me most at the moment is the wording of "areas" (plural, multiple) of GROSS (that's gotta mean BIG) of EPE (through the capsule - bad). My urologist was visibly concerned about the report and immediately phoned the surgeon who will be doing my biopsy - who phoned me directly himself 20 minutes after I left the urologist office and offered to squeeze me in right away for initial consult. They don't do that for tiny boo-boos.

I can handle that it's cancer. Its the seeming severity that I can't get my head around. I take good care of myself and excercise daily. Never had any health problems. Now this. My father had prostate cancer though and beat it easily with radio seeds but his was caught much earlier than mine. 

 

User
Posted 23 May 2024 at 06:29

At this stage you can't be sure how serious this is but note the UNREMARKABLES. These include the seminal vesicles and lymph nodes and this is good news. Also, as Adrian says, until you've got a definite result from a biopsy there's still a chance it's benign.

If it's cancer, from the news so far any spread is limited so worst case might be locally advanced, which is "curable".

The biopsy will be key here and probably it will lead to you being given an option of treatments, like a prostatectomy or radio therapy [of some sort] maybe with hormone treatment. In more serious gradings you might be limited to RT/HT only whereas if there's a chance you haven't got spread outside the capsule, it could be the prostatectomy path. I think I'm right in saying the biopsy can pick up cancer in the seminal vesicles, though it doesn't extend out to detecting cancer in lymph nodes. A PSMA PET scan is sometimes used if there's a suspicion of spread that far.

At 51 your age will be part of the decision because RT sightly increases the chances of cancer popping up somewhere, later as a result BUT that's always a possibility and the RT doesn't increase the probability by more than a couple of percentage points.

It doesn't matter if you're a glass half full or a glass half empty kind of guy [they'e both the same aren't they 🙂] if you didn't feel some dread about this you wouldn't be human BUT these days a diagnosis of prostate cancer is not a death sentence and from what you've said it's going to be tough but you'll probably get through.

 

Jules

Edited by member 23 May 2024 at 06:31  | Reason: Not specified

User
Posted 23 May 2024 at 23:23

Originally Posted by: Online Community Member

...I was told that surgeons are not keen on HT beforehand because it makes the cancer less well defined.

 

That’s a good point. That makes sense. I know I’m getting a little ahead of myself in asking about HT before RP as I certainly don’t know if surgery will even be an option for me given my results so far. If it is though, part of me would want to have it *but* only if some sort of treatment (HT or other) can be done to address the cancer that likely exists in the surrounding tissues (given my areas of gross EPE). I’m already antsy about not having any treatment yet and I still have roughly a month before I’ll have biopsy results. I’m happy that nothing was detected in the lymph nodes or seminal vessels – and I want to keep it that way.

 

Several of you have mentioned that I’m in the most stressful period right now. I sure hope so. The wait over the next month is really going to test my sanity.

 

Mike

User
Posted 24 May 2024 at 17:22
Hi again. So I just came back from the biopsy doc's office. I was given two options for the biopsy:

1 - MRI Guided Trans Rectal under local anesthesia in his office

or

2 - MRI Guided TransPerineal under general anesthesia in the hospital

I immediately chose the latter. Only bad part is it will take a bit longer to schedule and I have to go back to my primary care physician for MORE bloodwork (despite having been there for that just a few weeks ago) to get medical clearance for the anesthesia.

I did ask about whether or not any of the surrounding tissues (outside the prostate) are biopsied and he answered with a firm "NO". He said the needle is not supposed to touch any of those areas. He said they will get 2 or 3 cores directly from the tumor and I believe another dozen from other parts of the prostate.

Once I get the biopsy results back then he said I have to go for a (PSMA PET??) scan. Apparently that will give a truer picture of whether all those "unremarkable" tissues are really unremarkable or not. Great. I thought I was somewhat in the clear on the surrounding tissues. Now I feel like I have more to worry about - and even more delays. I am so tense right now. The next several weeks are really going to be a struggle to get through.

User
Posted 24 May 2024 at 18:15

Hi, I was recently in a similar position. Pirad 5, the MRI scan showed there was a tumour that had broken out of the capsule.

I had a. TP biopsy which came back clear. I was then given the option of a template biopsy, which I took.

 

Thankfully that also came back clear.

Although what you have sounds bad, it's not necessarily PC. 

I was lucky and I hope you are too.

 

User
Posted 27 Jun 2024 at 16:22

So, another update. I received my biopsy results last night. I feel sick to my stomach typing this. A good chunk of my cancer is Gleason 9 (4 + 5) w/ Cribriform. I know that's a really bad combination. Also, while my MRI only showed cancer on the right side of the prostate, the biopsy revealed that the left is cancerous as well (details below). Although the left side doesn’t look horrible, the fact that the MRI showed no cancer there and also showed that the surrounding tissues outside the prostate were clear (despite having “gross EPE”) I now feel certain that there must be cancer in the surrounding tissues and possibly lymph nodes as well.

 

Here's what the biopsy showed:

 

DIAGNOSIS:

A.  Prostate, MRI target #1, biopsy: Adenocarcinoma, Gleason score 4 (60%) + 3 = 7, grade group 3 involving 60% of 3 of 3 cores.

B.  Prostate, right mid, biopsy: Adenocarcinoma, Gleason score 4 (80%) + 5 (5%) = 9, grade group 4 involving 75% of 2 of 2 cores. Focal cribriform pattern 4 is present.

C.  Prostate, right posterior lateral, biopsy: Adenocarcinoma, Gleason score 4 (60%) + 3 = 7, grade group 3 involving 45% of 2 of 2 cores. Perineural invasion is present.

D.  Prostate, right anterior lateral, biopsy: Adenocarcinoma, Gleason score number 3 + 4 (10%) = 7, grade group 2 involving 10% of 2 of 2 cores.

E.  Prostate, right anterior mid, biopsy: Benign prostate tissue.

F.  Prostate, left posterior mid, biopsy: Adenocarcinoma, Gleason score 3 + 4 (10%) = 7, grade group 2 involving 5% of 1 of 2 cores.

G.  Prostate, left posterior lateral, biopsy: Adenocarcinoma, Gleason grade 4 + 4 = 8, grade group 4 involving 5% of 1 of 2 cores.

H.  Prostate, left anterior lateral, biopsy: Benign prostate tissue.

I.  Prostate, left anterior mid, biopsy: Benign prostate tissue.

 

 

If it wasn’t for section “B”, it wouldn’t be so bad. That’s the pill I’m having a really hard time trying to swallow.

 

My next step is meeting with a surgeon on July 8th  The point is probably moot as I doubt I’d be a candidate for surgery but he is a highly respected urological oncologist in our area and is affiliated with a hospital that has a very well respected oncology / radiology team. So hopefully, I’ll at least get pointed in the right direction for treatment of some sort. I also still need to get a PSMA PET scan to see if I’m metastatic or not. Can’t wait.

 

My wife and I had a good cry last night. I only got about 2 hours sleep. When she woke this morning, she started crying again uncontrollably (which got me started as well). Just a few weeks before I was diagnosed, her mother had passed away following a long battle w/ metastatic breast cancer. Now she has to go through this with me.

User
Posted 27 Jun 2024 at 16:47
Not the news that you were hoping for for sure but given your age I would think that surgery and then HT/RT would still be an option. It's unfortunate that your wife has had experience of breast cancer as that is a far more aggressive variant than PCa and trying to differentiate the two both in terms of aggressiveness and outcome in her mind is hard to do.

But the treatments are there and whilst not pleasant in terms of the life changes, once you get your heads around them they are not life limiting.

Do you have a date for the PSMA or bone scintigraphy yet?

Wishing you all the best and fingers crossed for some better news soon!

User
Posted 27 Jun 2024 at 17:09

Hi again 

I know it’s not the result you wanted but I would say that even with the G9 this cancer is still curable. 
I read an article I can’t think of it was this forum or another one I read that is having some debate about the cribform that says there is some doubt about the histology being always negative. I will look for it and post it on here if I can find it. 
I don’t know what the criteria are for surgery is where you are but but my husband has just had RP for his treatment and we await the histology .

I do know however that if you go down the Brachy RT/Hormone route that the stats are still good for a cure with G9 and EC. 

Each of these steps, biopsy, scans, results are horrible and they have to be got through BUT I can honestly say I think when you get on your way with treatment things do feel better. 

People with much more knowledge than me will comment but I wanted to say things won’t always feel this heightened and we are only a few weeks ahead of you so just try an take each day as it comes 

very best wishes 

User
Posted 29 Jun 2024 at 17:50

Hi Mike 

This is just the most horrible time! Waiting for results and treatment plan it really is torture. 
I know you are trying to prepare yourself for the worst but being diagnosed metastatic from the beginning with a lowish PSA isn’t the usual (I know some are and there are low secreting types and other indicators) so hard as it seems there is still a good chance it won’t be as bad as you are fearing. 
If there are no mets then you will be able to treat to cure BUT if it isn’t then the condition will still be treatable and reading as I have with my husbands Gleeson 9 it gave me some comfort how far treatment has come in and even in the last five years. There is so much hope to be taken from the people on this forum. 

I just wanted to send you my very best wishes and to know others are with you in these difficult days. Be kind to yourself 

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 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 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 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 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

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User
Posted 22 May 2024 at 22:40

Hi There 

We (myself and my husband) are just a little way down the line from you in that no treatment has taken place but tests and results have! 

it is a very similar story to yours.
My husband is 58 and had a routine check up and bam PSA raised and MPMRI ordered 

MRI showed PIRADS 5 16mm mid left posterior lesion no nodes seem to be involved 

He had a biopsy 6 out of 12 cores positive Gleason 9 4+5 

his bone scan was thankfully clear

not the news we had expected and we were in meltdown. 

Your MRI shows it’s probably cancer but as yet you don’t know if it is low Intermediate or high grade 

I know how hard it is with the waiting but I can honestly say that the advice and information and kindness of this forum is the place to be. 
I googled everything and to be honest I think half of it was wrong out of date or misunderstood by myself. 

when we went to Christie’s the other day to discuss treatments we were given much hope of curative treatments and also realised after speaking to the specialist nurse that most PC is not diagnosed as metastatic initially ( I know some are) and she also said that my husbands tumour did not represent that much overall cancer in the prostate as it was just one lesion. (like yours)
So although I am very new to this and I can’t offer you a lot I can say try your best not to jump ahead to the worst scenario as more than likely it won’t be and also that there are so many good treatments even if you end up like my husband with a high Gleeson score, which I hope you don’t. 

I know the lovely more knowledgeable people will respond to you but it’s late and I know how you must be feeling so wanted to respond. 

User
Posted 22 May 2024 at 23:16
Hi Margot,

Thank you for sharing your story and kind words of encouragement. I forgot when I posted that you folks are 6 hours ahead (I’m in the US). Sorry I kept you up writing! But again thank you. It really does help.

Obviously, there are US forums as well, but in reading through the many posts here, this forum just has such a warm, friendly vibe. It’s what I need right now.

Best wishes to you and your husband.

-Mike

User
Posted 23 May 2024 at 00:55

Hi Mike.

I'm sorry that you've had to join us but I'm glad you have. Welcome to the forum. 

As your reports states Pi-Rads 5 means its very likely cancer. However, only a biopsy can confirm that it is, and if so, what Gleason score it is.

There was a chap on here recently who had a similar scan to yours and it transpired that the tumour was benign. 

As far as I'm aware the T2 on the MRI relates to weight of the imaging not to the cancer stage. However, on my MRI report, they did give me a provisional radiological staging.

Is there not one on your report and what's your PSA?

Even if you're like me, and unlucky enough to have a high Gleason score and extra prostatic extension, it's not the end of the world, it's still curable. I had a prostatectomy 16 months ago and there is now no detectable PSA. 

The only advice I can give is take things one step at a time and try not focus on ifs or maybes. As for your head spinning and being in the darkest places, that natural mate, we've all felt that way, but it passes.

Please keep us updated we will do our best to support you.

 

Edited by member 23 May 2024 at 01:16  | Reason: Typo

User
Posted 23 May 2024 at 01:26

Originally Posted by: Online Community Member
people will respond to you but it’s late and I know how you must be feeling so wanted to respond.

Margot, how thoughtful and caring of you, to find time to respond to Mike, when you going through difficult times yourself. It's that sort of spirit that makes this place the jewel that it is. 👏

User
Posted 23 May 2024 at 02:55

Hi Adrian. I'm glad to hear you are doing well now. That gives me hope. My PSA was measured at 12.7 on April 30th. There was no staging info on the report. I posted the entire report minus the technical jargon at the beginning regarding the type of equipment used (3T etc... with and without contrast blah blah...) and the radiologist signature. I thought the staging comes from a combination of the MRI and biopsy? BTW, when they biopsy, do they just biopsy the prostate or do they also do any of the surrounding areas like seminal vessels etc?

I guess what's really worrying me most at the moment is the wording of "areas" (plural, multiple) of GROSS (that's gotta mean BIG) of EPE (through the capsule - bad). My urologist was visibly concerned about the report and immediately phoned the surgeon who will be doing my biopsy - who phoned me directly himself 20 minutes after I left the urologist office and offered to squeeze me in right away for initial consult. They don't do that for tiny boo-boos.

I can handle that it's cancer. Its the seeming severity that I can't get my head around. I take good care of myself and excercise daily. Never had any health problems. Now this. My father had prostate cancer though and beat it easily with radio seeds but his was caught much earlier than mine. 

 

User
Posted 23 May 2024 at 06:29

At this stage you can't be sure how serious this is but note the UNREMARKABLES. These include the seminal vesicles and lymph nodes and this is good news. Also, as Adrian says, until you've got a definite result from a biopsy there's still a chance it's benign.

If it's cancer, from the news so far any spread is limited so worst case might be locally advanced, which is "curable".

The biopsy will be key here and probably it will lead to you being given an option of treatments, like a prostatectomy or radio therapy [of some sort] maybe with hormone treatment. In more serious gradings you might be limited to RT/HT only whereas if there's a chance you haven't got spread outside the capsule, it could be the prostatectomy path. I think I'm right in saying the biopsy can pick up cancer in the seminal vesicles, though it doesn't extend out to detecting cancer in lymph nodes. A PSMA PET scan is sometimes used if there's a suspicion of spread that far.

At 51 your age will be part of the decision because RT sightly increases the chances of cancer popping up somewhere, later as a result BUT that's always a possibility and the RT doesn't increase the probability by more than a couple of percentage points.

It doesn't matter if you're a glass half full or a glass half empty kind of guy [they'e both the same aren't they 🙂] if you didn't feel some dread about this you wouldn't be human BUT these days a diagnosis of prostate cancer is not a death sentence and from what you've said it's going to be tough but you'll probably get through.

 

Jules

Edited by member 23 May 2024 at 06:31  | Reason: Not specified

User
Posted 23 May 2024 at 07:18

Hi Miguel,

It sounds like you have a small/standard size prostate at 20cc, less than a tequila shot and most people on here are a bit older and generally have larger prostates, your lesion is about the same size as the 500mg tablet I've just swallowed with my cup of tea and it sounds to be poking it's head out of the prostate, they may use different terminology in the states but as there's no seminal vessel involvement this would possibly be staged as T3a over here, it's certainly not exploding anywhere and in all probability has been lurking for quite some time.

It's great that your medics acted quickly, but you can't really infer anything negative from their haste if comparing it to the experiences of NHS patients on a UK forum, I can assure you that a patient presenting with exactly the same scan and PSA result over here would be getting uploaded letters after a few days as opposed to phone calls within the hour, 

PSA is one indicator of risk of spread and at 12.7 yours would be low risk,  I believe <20 is the threshold they use.

Hopefully you'll have favourable biopsy and scans soon and be looking at treatment options.

I think it's fair to say that most of us found the time from initial diagnosis to commencement of treatment very stressful.

All the best

Edited by member 23 May 2024 at 10:34  | Reason: Not specified

User
Posted 23 May 2024 at 10:01

Originally Posted by: Online Community Member
 I thought the staging comes from a combination of the MRI and biopsy? BTW, when they biopsy, do they just biopsy the prostate or do they also do any of the surrounding areas like seminal vessels etc?

Morning Mike.

Over here, at least on my two MRIs, they gave a radiological cancer staging, which was subject to the results of subsequent biopies. The biopsy results either changed or left the initial MRI staging the same.

It's a good point you raise about whether they check surrounding materials around the prostate during biopsy. I'm pretty certain that for both mine they didn't. The only mention I got of tissue around the prostate, seminal vesicles and lymph nodes, was after they'd removed the prostate. 

User
Posted 23 May 2024 at 16:12
Thank you all! I knew I came to the right place for support. I actually managed to get an ok(-ish) night sleep last night. Tomorrow morning I meet with the biopsy surgeon for some prelim. tests to determine what antibiotics to put me on after the biopsy and to get it scheduled. I believe it’s going to be the MRI guided kind.

The doc mentioned over the phone that I would have the option of local or general anesthesia. Any thoughts on that? Unless the procedure is excruciatingly painful, I’m thinking I’d do local as local would probably get scheduled faster and I’m assuming that going general means I’ll be sick all day afterwards (I was after my wisdom teeth got yanked years ago).

I’m going to ask the doc the question about whether any of the surrounding tissues gets biopsied given my EPEs and I will report back here on what he says.

Adrian – I see you mentioned that you had EPE along with high gleason and they still did RP on you. Given the EPE + high Gleason combo, did they give you any immediate treatment PRIOR to RP (like HT or other meds) to prevent the spread of any cancer cells that might be hiding in the surrounding tissues that could be missed by the surgeon or were you just expected to wait and see if anything pops up down the road? Do they ever start people on HT BEFORE having RP?

User
Posted 23 May 2024 at 16:59

Hi Mike.

I'm so pleased you managed to get a decent kip. You seem to have a great attitude to this potential setback.👍

I've had 2 biopsies one when they shuff something up your butt called a TRUS biopsy the other was done under general  anaesthetic. The second apparently was more accurate, probably because I wasn't wriggling around so much. I found neither a problem. Personally I would advise the second because as I said I was told it was more accurate. The anaesthetic wasn't a problem I think I was only in hospital, including recovery time for about, 5 hours. 

I wasn't allowed to drive, my wife had to.pick me. I directed her straight to KFC to top up my energy levels.

I did have about a month's HT prior to the op but I think that was because at that time there was a lot of discussion going on as to my suitability for surgery. I think most thought I would be going down the RT route but I was later approved for the op. I'm unsure whether they gave me HT to stem the disease or because they thought RT was the most likely treatment.

 

Edited by member 23 May 2024 at 17:12  | Reason: Additional text

User
Posted 23 May 2024 at 18:22

When I asked whether I should have HT before my RP (which was scheduled at the time to be 5 or 6 weeks away) the consultant told me that they might have given me HT if there was going to be a long delay (e.g. 6+ months) but that it was not worth doing HT if the RP was only a few weeks away because the risk of any significant spread over that time period would be extremely small.

I have no idea if that is the usual protocol in the NHS or whether that was just his view.

User
Posted 23 May 2024 at 20:38

KS25, HT before RP became popular during the COVID pandemic and continued following long waiting times. Prior to COVID I don't recall many guys having HT before RP. I waited 4 months from diagnosis to surgery back in 2014 and didn't have HT.

Hope all goes well for you.

Thanks Chris 

User
Posted 23 May 2024 at 21:08

Mike. I was diagnosed during Covid (2021) and the surgical waiting list at that time was six months plus. They were going to put me on HT but in the end I paid to have it done privately within 6 weeks. I was told that surgeons are not keen on HT beforehand because it makes the cancer less well defined. I was staged at T3b (extra prostatic extension and seminal vesicle involvement) with lesions on the right and left. Surgery is a bit of a gamble with that sort of staging and in my case I needed salvage radiotherapy to eradicate remnants in the prostate bed. My RT was completed in October 2022 and so far so good. PSA remains undetectable. I think everyone would agree diagnosis is your worst time. Once you get a treatment plan things will start to feel better. Good luck. Chris

User
Posted 23 May 2024 at 23:23

Originally Posted by: Online Community Member

...I was told that surgeons are not keen on HT beforehand because it makes the cancer less well defined.

 

That’s a good point. That makes sense. I know I’m getting a little ahead of myself in asking about HT before RP as I certainly don’t know if surgery will even be an option for me given my results so far. If it is though, part of me would want to have it *but* only if some sort of treatment (HT or other) can be done to address the cancer that likely exists in the surrounding tissues (given my areas of gross EPE). I’m already antsy about not having any treatment yet and I still have roughly a month before I’ll have biopsy results. I’m happy that nothing was detected in the lymph nodes or seminal vessels – and I want to keep it that way.

 

Several of you have mentioned that I’m in the most stressful period right now. I sure hope so. The wait over the next month is really going to test my sanity.

 

Mike

User
Posted 23 May 2024 at 23:46

Miguel,

TRUS is literally a trans rectal ultra-sound probe, so it's guided by ultrasound.

A template biopsy is also semi-descriptive in that it's a sampling system that works on a grid system and takes a large number of samples, up to about 50. It's done with a general anaesthetic.

I've had a general for both removal of wisdom teeth and a template biopsy. The teeth one was horrible, the template biopsy was fine.

If you have a template biopsy [not sure if this applies to TRUS] you'll pee blood for a week, or maybe a bit longer, afterwards. This is alarming but harmless.

As for the time when you might get to choose your treatment, it seems to be a natural tendency to go for RP but just hold your horses on this one and see how things pan out.

 

Jules

User
Posted 24 May 2024 at 00:04

Hi again Mike.

I don't want to divert from your conversation, but it gives me the opportunity to ask a question about HT prior to prostatectomy.

My pre op Gleason score was 8 (4+4), after the op it was upgraded to Gleason 9 (4+5). I was told this increase may have been due to the short time I was on HT prior to the op. I've never understood that. If I was put on HT to stem disease progression why would that HT increase the Gleason score?

I've tried researching it but can't find anything.

Edited by member 24 May 2024 at 00:06  | Reason: Not specified

User
Posted 24 May 2024 at 04:10

I can literally only speculate Adrian,but it never usually stops me😂

The grading of cancer cells is based on how they look, 1 and 2 healthy cells, 3 and 4 somewhat like healthy cells and 5 not really like normal cells at all. HT can destroy cancer cells, but I don't think it can repair them so perhaps after very short term HT some grade 4 cancer cells that have been exposed to HT and are in the process of dying begin to look even less like normal cells than unaffected grade 4 cells and tip over into grade 5.

Sounds somewhat logical, but might be Bollox. If this were correct then there'd be little point in doing a biopsy on anyone who had started on HT. 

Edited by member 24 May 2024 at 04:22  | Reason: Not specified

User
Posted 24 May 2024 at 07:06

Originally Posted by: Online Community Member

Sounds somewhat logical, but might be Bollox. If this were correct then there'd be little point in doing a biopsy on anyone who had started on HT. 

You’re quite right, and that was the explanation given to me by my Oncologist when I asked to start HT immediately. He said no. They want to see the cancer cells under microscope unaffected by HT, in their “natural” state.

I started HT the day after my biopsy. 

User
Posted 24 May 2024 at 17:22
Hi again. So I just came back from the biopsy doc's office. I was given two options for the biopsy:

1 - MRI Guided Trans Rectal under local anesthesia in his office

or

2 - MRI Guided TransPerineal under general anesthesia in the hospital

I immediately chose the latter. Only bad part is it will take a bit longer to schedule and I have to go back to my primary care physician for MORE bloodwork (despite having been there for that just a few weeks ago) to get medical clearance for the anesthesia.

I did ask about whether or not any of the surrounding tissues (outside the prostate) are biopsied and he answered with a firm "NO". He said the needle is not supposed to touch any of those areas. He said they will get 2 or 3 cores directly from the tumor and I believe another dozen from other parts of the prostate.

Once I get the biopsy results back then he said I have to go for a (PSMA PET??) scan. Apparently that will give a truer picture of whether all those "unremarkable" tissues are really unremarkable or not. Great. I thought I was somewhat in the clear on the surrounding tissues. Now I feel like I have more to worry about - and even more delays. I am so tense right now. The next several weeks are really going to be a struggle to get through.

User
Posted 24 May 2024 at 17:50

Thanks for the update mate and clarifying the biopsy issue. You'll be okay buddy. Your journey, like most of ours, will  have delays and concerns, but you'll get there in the end. 👍

Edited by member 24 May 2024 at 17:53  | Reason: Typo

User
Posted 24 May 2024 at 18:15

Hi, I was recently in a similar position. Pirad 5, the MRI scan showed there was a tumour that had broken out of the capsule.

I had a. TP biopsy which came back clear. I was then given the option of a template biopsy, which I took.

 

Thankfully that also came back clear.

Although what you have sounds bad, it's not necessarily PC. 

I was lucky and I hope you are too.

 

User
Posted 24 May 2024 at 18:27

Originally Posted by: Online Community Member
Hi, I was recently in a similar position.

Hi Shifty.

Thank you for your timely intervention.It was you, I was refering to in one of my early posts.

There was a chap on here recently who had a similar scan to yours and it transpired that the tumour was benign.

Edited by member 24 May 2024 at 18:28  | Reason: Additional text

User
Posted 18 Jun 2024 at 17:30

Hi all. Wanted to give a quick update. I just had my transperineal biopsy this morning at my local hospital. The procedure was done under light general anesthesia. They wheeled me into the operating room, started the I.V. and next thing I was waking up in the recovery room. No discomfort whatsoever. I was at the hospital for roughly 3.5 hours and am home now. 

Only after effect right now is noticeably reduced urine flow though I am able to go which is the important thing. A little blood in urine but nowhere near what I thought it would be.

Now the nervous wait for the results. Doc said he'd call in a week or so when they come in. I'm worried that given my tumor has broken through the capsule that it will be a high gleason but hoping for the best. I'll post when I get the results.

 

User
Posted 18 Jun 2024 at 22:19

Thanks for the update mate. I'm glad you had a comfortable biopsy and hope your results are good. 🤞

User
Posted 27 Jun 2024 at 16:22

So, another update. I received my biopsy results last night. I feel sick to my stomach typing this. A good chunk of my cancer is Gleason 9 (4 + 5) w/ Cribriform. I know that's a really bad combination. Also, while my MRI only showed cancer on the right side of the prostate, the biopsy revealed that the left is cancerous as well (details below). Although the left side doesn’t look horrible, the fact that the MRI showed no cancer there and also showed that the surrounding tissues outside the prostate were clear (despite having “gross EPE”) I now feel certain that there must be cancer in the surrounding tissues and possibly lymph nodes as well.

 

Here's what the biopsy showed:

 

DIAGNOSIS:

A.  Prostate, MRI target #1, biopsy: Adenocarcinoma, Gleason score 4 (60%) + 3 = 7, grade group 3 involving 60% of 3 of 3 cores.

B.  Prostate, right mid, biopsy: Adenocarcinoma, Gleason score 4 (80%) + 5 (5%) = 9, grade group 4 involving 75% of 2 of 2 cores. Focal cribriform pattern 4 is present.

C.  Prostate, right posterior lateral, biopsy: Adenocarcinoma, Gleason score 4 (60%) + 3 = 7, grade group 3 involving 45% of 2 of 2 cores. Perineural invasion is present.

D.  Prostate, right anterior lateral, biopsy: Adenocarcinoma, Gleason score number 3 + 4 (10%) = 7, grade group 2 involving 10% of 2 of 2 cores.

E.  Prostate, right anterior mid, biopsy: Benign prostate tissue.

F.  Prostate, left posterior mid, biopsy: Adenocarcinoma, Gleason score 3 + 4 (10%) = 7, grade group 2 involving 5% of 1 of 2 cores.

G.  Prostate, left posterior lateral, biopsy: Adenocarcinoma, Gleason grade 4 + 4 = 8, grade group 4 involving 5% of 1 of 2 cores.

H.  Prostate, left anterior lateral, biopsy: Benign prostate tissue.

I.  Prostate, left anterior mid, biopsy: Benign prostate tissue.

 

 

If it wasn’t for section “B”, it wouldn’t be so bad. That’s the pill I’m having a really hard time trying to swallow.

 

My next step is meeting with a surgeon on July 8th  The point is probably moot as I doubt I’d be a candidate for surgery but he is a highly respected urological oncologist in our area and is affiliated with a hospital that has a very well respected oncology / radiology team. So hopefully, I’ll at least get pointed in the right direction for treatment of some sort. I also still need to get a PSMA PET scan to see if I’m metastatic or not. Can’t wait.

 

My wife and I had a good cry last night. I only got about 2 hours sleep. When she woke this morning, she started crying again uncontrollably (which got me started as well). Just a few weeks before I was diagnosed, her mother had passed away following a long battle w/ metastatic breast cancer. Now she has to go through this with me.

User
Posted 27 Jun 2024 at 16:47
Not the news that you were hoping for for sure but given your age I would think that surgery and then HT/RT would still be an option. It's unfortunate that your wife has had experience of breast cancer as that is a far more aggressive variant than PCa and trying to differentiate the two both in terms of aggressiveness and outcome in her mind is hard to do.

But the treatments are there and whilst not pleasant in terms of the life changes, once you get your heads around them they are not life limiting.

Do you have a date for the PSMA or bone scintigraphy yet?

Wishing you all the best and fingers crossed for some better news soon!

User
Posted 27 Jun 2024 at 17:04

Hello again mate.

I'm sorry that your biopsy results aren't as good as we hoped for. I fully understand how upsetting it is for you and your wife. My heart goes out to you both.

I know how difficult it is to be positive, but it isn't the end of the world mate.  As I said, after my op my Gleason was upgraded to 9 (4+5) and T3a EPE. The surgeon also removed the seminal vesicles, 9 lymph nodes and some other tissue around the EPE, they all came back clear. Nearly 17 months later and my PSA is still undetectable. There are several others who had a similar Gleason and staging to me, who are also now apparently cancer free.

Best of luck with your next consultation.

Edited by member 27 Jun 2024 at 17:07  | Reason: Typo

User
Posted 27 Jun 2024 at 17:09

Hi again 

I know it’s not the result you wanted but I would say that even with the G9 this cancer is still curable. 
I read an article I can’t think of it was this forum or another one I read that is having some debate about the cribform that says there is some doubt about the histology being always negative. I will look for it and post it on here if I can find it. 
I don’t know what the criteria are for surgery is where you are but but my husband has just had RP for his treatment and we await the histology .

I do know however that if you go down the Brachy RT/Hormone route that the stats are still good for a cure with G9 and EC. 

Each of these steps, biopsy, scans, results are horrible and they have to be got through BUT I can honestly say I think when you get on your way with treatment things do feel better. 

People with much more knowledge than me will comment but I wanted to say things won’t always feel this heightened and we are only a few weeks ahead of you so just try an take each day as it comes 

very best wishes 

User
Posted 27 Jun 2024 at 22:45

Hi MM

I’m really sorry to read what you and your wife are going through right now. It is horrendous, particularly with her mother passing away with breast cancer. I would however point out that breast cancer is generally considered to be much more aggressive than Pca, so you cannot draw a direct comparison, or outcome. 


Originally Posted by: Online Community Member

B.  Prostate, right mid, biopsy: Adenocarcinoma, Gleason score 4 (80%) + 5 (5%) = 9, grade group 4 involving 75% of 2 of 2 cores. Focal cribriform pattern 4 is present.

Cribiform normally presents in Gleason grade 4 and it has a slightly higher risk of metastasis.  Slightly being the operative word here. The main driver of spread risk is the Gleason grade, and you only have 5% of grade 5.

You are curable. Whether by way of prostatectomy or HT/RT, you are absolutely curable ! Anything without bone metastasis is curable, and even with metastasis it is very treatable.

User
Posted 28 Jun 2024 at 22:10

Thank you all for your kind and encouraging responses. 

Originally Posted by: Online Community Member
...I would think that surgery and then HT/RT would still be an option.

Crazy as this may sound, I'm actually hoping for planned combined treatment, though I'll be happy enough if ANY curative treatment actually can be offered.  If I am lucky enough that my remaining scan(s) don't show any lymph involvement or distant mets and I am given a choice of curative treatments, my plan will be to ASK if it is possible to plan to have surgery followed by adjuvent radiation. Yes, I realize that PLANNING to have BOTH surgery and RT is at the far end of "radical" but given my stats so far (aggressive cancer w/ cribriform that has conclusively breached the capsule) I feel like neither surgery, nor RT individually will be enough to "cure" me. Surgery would get the bulk of cancer out but would likely leave some pc behind. It is also unlikely that HTRT by itself could clear the whole lot of it as there is a lot of it and aggressive cribriform cancers are known to have SOME resistance to radiation even with HT added (I found a study on it but can't find the link right now). I would think planning for both - or even surgery followed by early salvage HTRT (done at the earliest signs of PSA increase) would give the best possible chance. I'm not expecting the surgeon will be keen on this, but I'll ask anyway and see what he has to say.

Originally Posted by: Online Community Member
Do you have a date for the PSMA or bone scintigraphy yet?

Not currently. My next step is an initial consult with a very well respected urological oncologist on July 8th. This individual's practice will be taking over my care moving forward. The current urologist I have been seeing does not perform prostatectomies and the hospital he is associated with has a minimal radialogical facility. I would have liked to have started my treatment with the U.O. I am seeing on the 8th but he had a two month waiting list for new patients so I had to begin my journey elsewhere. Anyway, the UO will set me up with an appointment for a PSMA PET scan after I see him. 

As for my current state of sanity, I'm doing the best I can to keep my sh*t together and remain positive. I have continued working through all this. My positives are I'm young, 51, in really good health otherwise. I have a wonderful wife of 20 years, great job, a beautiful home, and still have my dad around who is in amazing shape at 93 years old. I'm usually a pretty tough person in stressful situations but this is different. I've been through a couple of other surgeries (non-cancer related) and have been through some other incredibly stressful situations including sudden deaths of people I was close to, broken relationships, financial troubles, etc... I've always been able to cope on my own (never needed any meds for anxiety or depression). What has gotten me through these past situations was knowing that eventually, things would get better, no matter how far down the road and I would just focus on that. In this situation, at least at this point in time, I don't have that. This time, I am really struggling. I don't mean to harp on this guys, but typing this out feels somewhat therapeutic. I have been stressing HARD now for TWO SOLID MONTHS straight and I have at least another month ahead of me before I know if my pc has metastasized or not. Given all the evidence so far, it's a very real possibility. I know... I know... "Stop saying stuff like that", but that is the reality and I need to be prepared for it. It's weird, for some brief moments, I feel like I can handle it if it comes to fruition. Then, moments later, I become overwhelmed with fear and tension and I suddenly don't have the foggiest idea of how I would deal with it. This level of stress for this length of time is wearing me out. I'm exhausted. I need a break from it. Without some sort of positive news from a doctor (as in after all tests are done, he says - "Ok Mike, I believe we can cure this"), I don't know how to get that break. Dang it!! The medical community needs to figure out how to reduce the length of time of the diagnostic process!!!!! People should not have to go through this for so long. My primary care doc prescribed me some Xanax yesterday. I tried one last night and it did nothing for me. I don't want to start using any drugs right now anyway. I know I'll make it to the PET scan somehow, some way, though I may be crawling on my hands and knees by then. Sorry for the rant. I needed to get that out.

I will report back when I have further news. Thanks again.


-Mike

Edited by member 28 Jun 2024 at 23:21  | Reason: slight wording change

User
Posted 29 Jun 2024 at 08:30

Originally Posted by: Online Community Member
 I have been stressing HARD now for TWO SOLID MONTHS straight and I have at least another month ahead of me before I know if my pc has metastasized or not. Given all the evidence so far, it's a very real possibility. I know... I know... "Stop saying stuff like that", but that is the reality and I need to be prepared for it. It's weird, for some brief moments, I feel like I can handle it if it comes to fruition. Then, moments later, I become overwhelmed with fear and tension and I suddenly don't have the foggiest idea of how I would deal with it. This level of stress for this length of time is wearing me out. I'm exhausted.

Hi  Mike

I think that you are coping very well. Most of our journeys are full of high and lows. It's like being on a scary roll coaster that you can't get off for months. It's great that you are managing to focus on the positives. It helped me get through by thinking what would happen if  I didn't have the treatment. When you think about it there are no alternatives, other than buckling down and dealing with everything that's thrown at you.

Try not to concentrate on what might happen and put all your energy into dealing what is happening.

Things will improve and you will regain full control of your own life. Very best of luck to you mate.

User
Posted 29 Jun 2024 at 17:50

Hi Mike 

This is just the most horrible time! Waiting for results and treatment plan it really is torture. 
I know you are trying to prepare yourself for the worst but being diagnosed metastatic from the beginning with a lowish PSA isn’t the usual (I know some are and there are low secreting types and other indicators) so hard as it seems there is still a good chance it won’t be as bad as you are fearing. 
If there are no mets then you will be able to treat to cure BUT if it isn’t then the condition will still be treatable and reading as I have with my husbands Gleeson 9 it gave me some comfort how far treatment has come in and even in the last five years. There is so much hope to be taken from the people on this forum. 

I just wanted to send you my very best wishes and to know others are with you in these difficult days. Be kind to yourself 

User
Posted 29 Jun 2024 at 20:11
Mike

I like the way you think and combined surgery + RT/HT does sound like a plan if you can get the surgeon to agree. I chose surgery as I just wanted that cancerous lump out of me and based on my histology I always knew that HT/RT was on the cards - so be it. In fact I started HT in April and one more week of RT which hasn't been bad at all - waay better than I anticipated.

Getting your head around it is the hardest part and we all naturally think the worst - that's the human condition LOL

The only issue might be getting the surgeon to accept an operation that is not going to be a full cure - although they can go a bit further than the prostate, removing the nerve bundles and seminal vessels and they will naturally remove lymph nodes from the area, if they are someone who wants their performance measures to register 'successful' procedures in the league table then you might face some reluctance - but keep at them if needed!

Even if you then have to go on to HT/RT or cyberknife etc or even chemo then the treatments are extremely well understood and survival rates excellent especially as you have your age/fitness on your side.

Now you just to get that head of yours under control and put everything into perspective -;)

Take care and keep us in the loop

Steve

User
Posted 01 Aug 2024 at 17:03

Hello friends. Time for an update. On July 8th, I met with a very well respected and experienced urologic oncologist surgeon (operates 2 days a week, 300+ robotic surgeries per year!) to go over my case with him and get his thoughts on a treatment plan. He STRONGLY urged me to have surgery as opposed to radiation providing results of a PSMA PET scan (which he prescribed) prove negative for any nodal involvement or other metastatic spread. In fact, later that same day, the hospital phoned me with a surgery date of September 4th (pending results of the PET scan). I accepted the surgery date just to keep things moving along but also scheduled an appointment with the same hospital's radiologist (Aug. 6th) as I want to get both opinions before making my final decision.

This past Tuesday (July 30th), I had my PSMA PET scan. Given my high gleason (4+5) and visible EPE (on MRI), I was soooooooooooooooo scared of what the results would be. My hospital has a patient portal that all test results are posted on immediately when received. Yesterday, I received a text message that the results had been posted. My hands were shaking so bad I had a hard time entering my login credentials to view the report. THANK GOD, the results were negative for any evidence of any nodal involvement or other metastastic spread. Finally, a touch of good news! Surgeon confirmed the results as well. I have also received medical clearance from my primary care doctor to have surgery AND the hospital has now bumped the surgery date forward to August 19th. Oi! So now, after three months of waiting, fearing, waiting, stressing, more waiting... now it feels like the sh*t is hitting the fan!!  

Next Tuesday (Aug 6th), I have a morning appointment with the surgeon to go over any final questions / concerns I may have about the surgery. Then, that same afternoon I have an appointment with the radiologist to discuss HTRT either instead of, or in conjunction with surgery. Again, Oi!!! Then it's decision time.

I am NOT looking for any advice as to which route to take. I am merely posting this as an update to my thread. This is my decision. I've done my homework on this and have my thoughts. I want the prostate out as I am genetically predisposed to producing prostate cancer and feel that radiation alone, at best, would only be a temporary fix. Plus, G4 cribriform (which I have) is known to be somewhat radiation resistant. However, I do recognize that in my case, surgery is likely to leave some cancer behind so I plan to push (now) for adjuvant HTRT therapy afterwards. I mentioned this to the surgeon when I met with him on the 8th and while he wasn't so much gung-ho on adjuvant therapy he did say "early salvage" treatment was an option which he defined as either a post surgical outcome having any positive surgical margin or 1st PSA score any higher then "undetectable". In that case, the HT would start immediately to prevent spread while allowing me to heal, then get on with the RT once my body is ready. I think we are close enough on the same page on this. Now the question is, will the radiologist tell me any different? If he's on board with this approach, then that is the plan. If he should point out that surgery for any reason makes future radiation treatment any more difficult, less effective or limits it in any way, that could be a game changer. Once again, oi. At least I have a weekend first to try and calm my nerves a bit. I think I'm going to prescribe myself a drink or two...

User
Posted 01 Aug 2024 at 17:48

 Hello mate.

 The difference between outcomes of RT and surgery is generally minimal. However, the outcomes for individuals can vary enormously. Based on your circumstances, do your own research, make a decision,  stick to it and never regret it.

Best of luck mate.

 

Edited by member 01 Aug 2024 at 18:16  | Reason: Typo

User
Posted 01 Aug 2024 at 22:19

Hi Mike,

Sounds like you’re well on top of making your decision so all I can do is wish you good luck with your treatment.

Derek

User
Posted 07 Aug 2024 at 22:44
Quick update. I met with both the surgeon and radiologist yesterday. Both meetings went very well. Both docs were patient gents who answered all of my questions and each spent a great deal of time with me despite being very busy. To my surprise, the radiologist actually nudged me a bit towards surgery. He said he felt I would do well with surgery and was in the hands of an excellent surgeon. He also has no problem with performing early salvage treatment should I need it. This has reaffirmed my decision on treatment so I will move forward with surgery on Aug. 19th.

The surgeon told me something interesting about the surgery that I don't believe I've heard anyone else mention here (I could be wrong). Apparently, during the procedure, immediately following removal of the prostate, he sends a (slice?) of what was removed to an onsite lab that IMMEDIATELY checks for positive margins while I'm still under anesthesia. The doc is phoned in the operating room and given the result on the spot to let him know if he needs to remove more tissue. This is not the full histology report but rather just a quick check for positive margins. I asked him if this was unique to this particular hospital and he said "no, plenty of others do it as well". Perhaps I'm mistaken but I don't believe I've heard of this mentioned by anyone on this forum? Did anyone else have this done? I'm hoping this will be beneficial to me given the fact that my cancer has broken through the capsule.

The surgeon also offered me the option of having a "supra-pubic (??)" catheter instead of the standard urethra type if I wanted. He explained to me what it is but I wasn't sure if it would complicate the procedure in any way so I said just go with whatever is simpler so for now I will be getting the standard catheter. Starting to wonder though if supra pubic might be better (less discomfort)? How bad is the regular catheter?

User
Posted 08 Aug 2024 at 09:20

Hello again mate.

Your consultations seem excellent. The test for margins during surgery seem wonderful. I have heard of it before. I saw a surgeon doing the same on  a TV programme here but he was dealing with a much more serious cancer operation. I'm also impressed with them giving you a choice of catheters.

Are you in the USA? If so this might explain your gold star service compared to our hard pressed NHS. 

Best of luck with your op and please keep us updated.

Edited by member 08 Aug 2024 at 09:42  | Reason: Additional text

User
Posted 08 Aug 2024 at 17:15
Thanks Adrian. Yes, I am in the US (New York), but I don't think we're any better off than what you have over there. You are fortunate to have NHS. Don't knock it. Here in the states, health insurance is very expensive and has only recently become more widely government regulated and available to lower income individuals (which could change back if the fat orange guy gets elected president this year). I am fortunate that my wife's company provides us both with excellent coverage. BTW on a side note, her company imports top notch alcohol from your neck of the woods - any Scotsmen here??

I am also fortunate to live in a densely populated area that has several hospitals. I guess they each have there strengths and weaknesses. For example, there is a very large hospital just a few minutes from where I live that surprisingly has only ONE urologic surgeon and he apparently has been MIA for several months with health issues of his own. His profile says he's been "trained" on the DaVinci apparatus. Umm...no thanks. The hospital I chose is a further drive but has a very strong urologic oncology team. In some parts of the country, you'd have to travel by plane to have RP done. Depends where you are.

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

 
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