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User
Posted 19 Jun 2024 at 11:58

My story so far as a 56 year old (with wife and adult kids)

Have had annual PSA blood tests for the last 6 years to have a baseline. Nothing strange I assumed with starting at 1.1 with the last one 3.3 - rising slowing but not concerning.

Fell off my bike before Xmas riding down a couple of steps - handlebar to groin - ouch. Got checked over with an ultrasound, picked up an enlarged prostate 54cc. In hindsight was causing some waterwork issues but bearable. Put on tablets to help, though sent for a constrast MRI to just make sure nothing sinister that could be masked. Came back with a suspicious area 11mm PI RAD 4. That prompted a TP Biopsy which has just returned a left anterior prostatic adenocarsinoma Gleason 4+3 (7) score which is contained. I go for a PET scan next week to make sure no other issues and am having the ‘talk’ when results are back.

In someways I’m grateful I fell off the bike but it’s opened a can of worms in my head. Positives is that it is contained so probably means getting a RP but that life would change. It’s in the back of my mind that this isn’t going away. It gets dismissed as something else gets you before this does, but at my age? There’s abit a guilt worrying about nothing. Bit low at the moment but just wanted to share where I’m at. 

User
Posted 20 Jun 2024 at 16:14
TBH a rise from 1.1 to 3.3 in 5 years should have triggered an investigation, would have avoided having to throw yourself off your bike!
User
Posted 19 Jun 2024 at 11:58

My story so far as a 56 year old (with wife and adult kids)

Have had annual PSA blood tests for the last 6 years to have a baseline. Nothing strange I assumed with starting at 1.1 with the last one 3.3 - rising slowing but not concerning.

Fell off my bike before Xmas riding down a couple of steps - handlebar to groin - ouch. Got checked over with an ultrasound, picked up an enlarged prostate 54cc. In hindsight was causing some waterwork issues but bearable. Put on tablets to help, though sent for a constrast MRI to just make sure nothing sinister that could be masked. Came back with a suspicious area 11mm PI RAD 4. That prompted a TP Biopsy which has just returned a left anterior prostatic adenocarsinoma Gleason 4+3 (7) score which is contained. I go for a PET scan next week to make sure no other issues and am having the ‘talk’ when results are back.

In someways I’m grateful I fell off the bike but it’s opened a can of worms in my head. Positives is that it is contained so probably means getting a RP but that life would change. It’s in the back of my mind that this isn’t going away. It gets dismissed as something else gets you before this does, but at my age? There’s abit a guilt worrying about nothing. Bit low at the moment but just wanted to share where I’m at. 

User
Posted 19 Jun 2024 at 12:38
I think that you should be very thankful for that fall and subsequent scan as it has put you on track for a fully curative treatment plan. Without it you would likely have done nothing for the next 4 or 5 years and ended up having to endure much more radical and invasive treatment.

Remember that at least 12% of men are diagnosed with Prostate Cancer - likely that a much higher percentage actually have it but die of something else - cardiac, stroke etc etc so to find out at this early stage is a huge plus.

RP if that is the chosen treatment isn't that bad once you get your head around it, but there are other treatments such as Brachy that may be appropriate if that's the way you decide to go.

What part of RP are you concerned about - plenty here have had it and can talk you through what happens and how to approach those 'life changes' that might be concerning you.

Best of luck as you progress through this.

Steve

User
Posted 19 Jun 2024 at 21:37

Hi, that was a lucky accident.  Your prostate is quite large which would add something to your psa.  Although your psa reading is fairly low for a detected lesion.  That level could be declared as normal but the increase makes it not normal.  Gleason with a 4 adds to it.  Mine was 4+4 upgraded to 4+4 after the op. 

I think surgery is or was more common for younger cases but have they offered RT or Brachytherapy?   It's easy to race into surgery, like I did.  Although I've never regretted it.   RT has improved and the latest treatment with much fewer but stronger doses sounds more attractive than the 30 odd doses of a few years ago.

  I'd certainly not recommend feeling guilty, as you say it won't go away    You sound like you know the situation but be ready with your choices when they ask. 

They say writing comments can let thoughts crystallise and ease your mind. As long as you don't get carried away I suppose.

All the best Peter

User
Posted 11 Jul 2024 at 11:02
Believe us all when we say that the anticipation is the WORST part - it will be far easier than you ever anticipate now.

Get working on the kegal exercises now and that will speed up recovering continence and ask all the questions you want. Ask the physio about Perineal Physiotherapy if it's available post RARP - it helped me tremendously but it's not available everywhere. It's a probe similar to a TENS machine that is inserted in the rectum that exercises the muscles and then you have 20 minutes of bio feedback where you exercise those muscles to make a pointer move on a screen. 100% worth it.

Good luck!

User
Posted 11 Jul 2024 at 11:31

You’ll be fine mate. I’m a few weeks ahead of you, with RP next week. I’ll try and keep you posted on what to expect 👍

User
Posted 11 Jul 2024 at 15:30

All the best with your op.  I was so pleased to get mine done and was really glad on the day.

On the Cialis question. My instinct was to let nature take its path and that meant letting all the wounds heal with no stress. The op I thought was a serious piece of work needing care afterwards.   ED was to be a topic I'd address later.

The surgeon had told me I'd need tablets and it would never be the same as he was taking the nerves on one side. It seemed to improve but I only took Cialis twice as I didn't like the way it made my shoulders ache.  It's never done much by itself although with the help of gravity alone I can get a very good response for my own pleasure.

Best wishes for your op

 

User
Posted 13 Jul 2024 at 08:06

I had a nerve-sparing RARP in December 2022. I had been in Sildenafil prior as my main symptom was erectile dysfunction. Once the catheter was out I was told to resume with the Sildenafil, one tablet per week, to assist with recovery. Following comments from contributors to this forum I bought a cheap vacuum pump which I used before getting a medical-grade pump prescribed some 12 weeks after the operation. I found the pump helped with regaining sexual function and although I need to use the tablets the erections are becoming more natural, ie no need to use a ring to maintain the erection. There doesn’t appear to be a standardised approach as some are on daily Cialis. Be guided by the Sexual Health nurse but recovery is possible.

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User
Posted 19 Jun 2024 at 12:38
I think that you should be very thankful for that fall and subsequent scan as it has put you on track for a fully curative treatment plan. Without it you would likely have done nothing for the next 4 or 5 years and ended up having to endure much more radical and invasive treatment.

Remember that at least 12% of men are diagnosed with Prostate Cancer - likely that a much higher percentage actually have it but die of something else - cardiac, stroke etc etc so to find out at this early stage is a huge plus.

RP if that is the chosen treatment isn't that bad once you get your head around it, but there are other treatments such as Brachy that may be appropriate if that's the way you decide to go.

What part of RP are you concerned about - plenty here have had it and can talk you through what happens and how to approach those 'life changes' that might be concerning you.

Best of luck as you progress through this.

Steve

User
Posted 19 Jun 2024 at 14:31

It comes as a shock when you get diagnosed by chance I suspect. I only found out I had PCa because I requested a PSA test due to my father having suffered with it.

I have been on AS since September last year, but am now being referred for RP as my PSA continues to rise. I know what you mean about the life changes, but am hoping that they will be minor in the grand scheme of things. As Steve says, there are loads of blokes on here who have been through it and shared their stories.

I'm 60, so a few years older than you but still apparently a "young man" in terms of being diagnosed. My choice of RP over RT is largely based on having RT as a fallback plan if they miss some, and the fact that I'd rather have the tumours cut out of me than just deactivated by RT.

Good luck with whatever you choose, and keep us updated.

Ian.

User
Posted 19 Jun 2024 at 16:13

Originally Posted by: Online Community Member
Fell off my bike before Xmas riding down a couple of steps

I'm 67 years old, we did cycling proficiency at school, which taught not us not to do Evel Knievel stunts.

Joking apart, welcome to forum mate.

I'm glad you've found us and posted. We'll always do our best to help and support you. 

You're bound to feel to feel low. 80% of newly diagnosed feel the same, the other 20% are liars.🙂

You'll feel much better when you've got a treatment plan to focus on. Good luck.

 

Edited by member 19 Jun 2024 at 16:14  | Reason: Typo

User
Posted 19 Jun 2024 at 21:37

Hi, that was a lucky accident.  Your prostate is quite large which would add something to your psa.  Although your psa reading is fairly low for a detected lesion.  That level could be declared as normal but the increase makes it not normal.  Gleason with a 4 adds to it.  Mine was 4+4 upgraded to 4+4 after the op. 

I think surgery is or was more common for younger cases but have they offered RT or Brachytherapy?   It's easy to race into surgery, like I did.  Although I've never regretted it.   RT has improved and the latest treatment with much fewer but stronger doses sounds more attractive than the 30 odd doses of a few years ago.

  I'd certainly not recommend feeling guilty, as you say it won't go away    You sound like you know the situation but be ready with your choices when they ask. 

They say writing comments can let thoughts crystallise and ease your mind. As long as you don't get carried away I suppose.

All the best Peter

User
Posted 20 Jun 2024 at 11:46

Thanks for the comments, I’m sure I’ll have questions going forward. I’m glad I found this forum, it’s a treasure of info and support. Pete

User
Posted 20 Jun 2024 at 16:14
TBH a rise from 1.1 to 3.3 in 5 years should have triggered an investigation, would have avoided having to throw yourself off your bike!
User
Posted 21 Jun 2024 at 14:02

I to can remember doing that as well in the school yard! 1979. Must of been the last year they did it. Disappeared with the milk. I even kept the triangular badge you got. I got a wagging finger when doing the ‘emergency stop’. We all wanted to have the longest skid mark to show off on Monday morning! 

Back on topic - there seems to be lots of treatment choices. All with pros and cons. Is there some kind of system to work out the best suited for your specific situation? Or does it become obvious with guidance from the doc?

have a good weekend - Pete

User
Posted 21 Jun 2024 at 15:20

Originally Posted by: Online Community Member
 I got a wagging finger when doing the ‘emergency stop’. We all wanted to have the longest skid mark to show off on Monday morning!

The longest school skidmarks were caused by the Izal toilet paper. It didn't wipe you clean, just spread it thinner. 

Edited by member 21 Jun 2024 at 15:32  | Reason: Typo

User
Posted 11 Jul 2024 at 10:22

My Update

So yes the count down has started - I’m booked in for a RP at the end of August.

Going through all the scans was abit unnerving especially the PET but had a positive outcome - no spread.
Being contained and ‘easily got out’ allows a focus on the operation and recovery.

Reading lots of people’s experiences and advice which is good. Going onto daily cailis tablets a week before and continuing after -have people found that helps recovery rather than taking as required?

I’m also being sent to a Physio …

 

User
Posted 11 Jul 2024 at 11:02
Believe us all when we say that the anticipation is the WORST part - it will be far easier than you ever anticipate now.

Get working on the kegal exercises now and that will speed up recovering continence and ask all the questions you want. Ask the physio about Perineal Physiotherapy if it's available post RARP - it helped me tremendously but it's not available everywhere. It's a probe similar to a TENS machine that is inserted in the rectum that exercises the muscles and then you have 20 minutes of bio feedback where you exercise those muscles to make a pointer move on a screen. 100% worth it.

Good luck!

User
Posted 11 Jul 2024 at 11:31

You’ll be fine mate. I’m a few weeks ahead of you, with RP next week. I’ll try and keep you posted on what to expect 👍

User
Posted 11 Jul 2024 at 15:30

All the best with your op.  I was so pleased to get mine done and was really glad on the day.

On the Cialis question. My instinct was to let nature take its path and that meant letting all the wounds heal with no stress. The op I thought was a serious piece of work needing care afterwards.   ED was to be a topic I'd address later.

The surgeon had told me I'd need tablets and it would never be the same as he was taking the nerves on one side. It seemed to improve but I only took Cialis twice as I didn't like the way it made my shoulders ache.  It's never done much by itself although with the help of gravity alone I can get a very good response for my own pleasure.

Best wishes for your op

 

User
Posted 13 Jul 2024 at 08:06

I had a nerve-sparing RARP in December 2022. I had been in Sildenafil prior as my main symptom was erectile dysfunction. Once the catheter was out I was told to resume with the Sildenafil, one tablet per week, to assist with recovery. Following comments from contributors to this forum I bought a cheap vacuum pump which I used before getting a medical-grade pump prescribed some 12 weeks after the operation. I found the pump helped with regaining sexual function and although I need to use the tablets the erections are becoming more natural, ie no need to use a ring to maintain the erection. There doesn’t appear to be a standardised approach as some are on daily Cialis. Be guided by the Sexual Health nurse but recovery is possible.

 
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