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Day 6 post RARP - 46 years old

User
Posted 06 Oct 2024 at 13:30

Hi all,

Firstly just wanted to thank all the contributors to this forum, so much good information, and also the specialist nurses who are brilliant.

Been thinking about telling my story here for a while and decided to go for it.

Early June I had a work medical and was offered a PSA test. I have a family history of Prostate Cancer with my Dad diagnosed and successfully treated age 61. My Father-in-Law was also unfortunately diagnosed with advanced disease and a PSA in the thousands this time last year so it felt right to take the test. First PSA came back raised at 4.02, repeat ten days later was 4.40 and I was referred to a Urologist. 

I’m very lucky to have private healthcare through work and had a first appointment a couple of weeks later. DRE normal (small and soft!) but PSA 4.52 and sent for MRI, which I had in early July. Results were PIRADS 2/3,  with a 22cc Prostate but a PSA density of 0.2, everything else appearing normal.

First dilemma, progress to biopsy or not. MRI report stated a low index of suspicion but I was anxious at this point having seen what advanced disease looks like and with my wife and two young sons (13 and 10) to think about decided I needed to know what was going on.

I had the Transperineal biopsy on July 29th. Received the results the day before I went on holiday on August 9th. Multifocal Gleason 3+3=6 in 9/30 cores, 4/6 segments, longest focus 9mm and highest volume 90%. Staged as T2c.

So many mixed emotions, shock and sadness at being told you have Cancer, relief with the Gleason score and no signs of perineural invasion but concern at risk with multifocal disease, worry for the future and my family, anger, why me at my age?! 

I met again with my Urologist, who recommended surgery. I also got a second opinion from another specialist Urologist and also spoke with an Oncologist. All recommended surgery in my case over AS or Radiotherapy as did the MDT. Reasoning was the multi focal nature of my disease, my age and relative fitness and all feeling it was only a matter of time until definitive treatment was needed. It didn’t take me long to make the decision in the end and surgery was booked for last Monday, September 30th.

I’m now day 6 post surgery after a two night stay in hospital. Recovery is good if a bit up and down physically and emotionally. I felt really good yesterday but maybe overdid it slightly and sore again today. The catheter is annoying more than anything, it’s uncomfortable but not really painful I’d say. I have an appointment for catheter removal and post surgery consultation next  Friday. The surgeon said no surprises and everything looked as expected post op but can’t help have some anxiety about the full pathology and thinking ahead to first PSA test in 8 weeks time.

The mental side has probably been the hardest thing over the past 3 months or so. I know I’m lucky compared to many with hopefully localised disease and a supportive family and work environment but it doesn’t always feel that way at my age!  I’m sure many will recognise the anxiety that it might not be cured, the worry about treatment side effects ( I had nerve sparring surgery but no guarantees and the incontinence side is a real worry), the impact on family life and my kids. Some sleepless nights for definite and I think it’s going to take some time before I can get my head round it all.

Anyway, apologies for the long post, it’s helpful to write it all down like this and I’m intending to update as the journey continues.

 

Edited by member 11 Oct 2024 at 14:33  | Reason: Spelling

User
Posted 06 Oct 2024 at 13:30

Hi all,

Firstly just wanted to thank all the contributors to this forum, so much good information, and also the specialist nurses who are brilliant.

Been thinking about telling my story here for a while and decided to go for it.

Early June I had a work medical and was offered a PSA test. I have a family history of Prostate Cancer with my Dad diagnosed and successfully treated age 61. My Father-in-Law was also unfortunately diagnosed with advanced disease and a PSA in the thousands this time last year so it felt right to take the test. First PSA came back raised at 4.02, repeat ten days later was 4.40 and I was referred to a Urologist. 

I’m very lucky to have private healthcare through work and had a first appointment a couple of weeks later. DRE normal (small and soft!) but PSA 4.52 and sent for MRI, which I had in early July. Results were PIRADS 2/3,  with a 22cc Prostate but a PSA density of 0.2, everything else appearing normal.

First dilemma, progress to biopsy or not. MRI report stated a low index of suspicion but I was anxious at this point having seen what advanced disease looks like and with my wife and two young sons (13 and 10) to think about decided I needed to know what was going on.

I had the Transperineal biopsy on July 29th. Received the results the day before I went on holiday on August 9th. Multifocal Gleason 3+3=6 in 9/30 cores, 4/6 segments, longest focus 9mm and highest volume 90%. Staged as T2c.

So many mixed emotions, shock and sadness at being told you have Cancer, relief with the Gleason score and no signs of perineural invasion but concern at risk with multifocal disease, worry for the future and my family, anger, why me at my age?! 

I met again with my Urologist, who recommended surgery. I also got a second opinion from another specialist Urologist and also spoke with an Oncologist. All recommended surgery in my case over AS or Radiotherapy as did the MDT. Reasoning was the multi focal nature of my disease, my age and relative fitness and all feeling it was only a matter of time until definitive treatment was needed. It didn’t take me long to make the decision in the end and surgery was booked for last Monday, September 30th.

I’m now day 6 post surgery after a two night stay in hospital. Recovery is good if a bit up and down physically and emotionally. I felt really good yesterday but maybe overdid it slightly and sore again today. The catheter is annoying more than anything, it’s uncomfortable but not really painful I’d say. I have an appointment for catheter removal and post surgery consultation next  Friday. The surgeon said no surprises and everything looked as expected post op but can’t help have some anxiety about the full pathology and thinking ahead to first PSA test in 8 weeks time.

The mental side has probably been the hardest thing over the past 3 months or so. I know I’m lucky compared to many with hopefully localised disease and a supportive family and work environment but it doesn’t always feel that way at my age!  I’m sure many will recognise the anxiety that it might not be cured, the worry about treatment side effects ( I had nerve sparring surgery but no guarantees and the incontinence side is a real worry), the impact on family life and my kids. Some sleepless nights for definite and I think it’s going to take some time before I can get my head round it all.

Anyway, apologies for the long post, it’s helpful to write it all down like this and I’m intending to update as the journey continues.

 

Edited by member 11 Oct 2024 at 14:33  | Reason: Spelling

User
Posted 06 Oct 2024 at 14:01

Many thanks mate, appreciate it. I guess it’s not the club you’d pick but once you start talking to people about Prostate Cancer it doesn’t take long to realise how many families it impacts. 

User
Posted 11 Oct 2024 at 20:48

Had my post op consultation today, negative margins achieved and everything was contained. My Gleason was upgraded to 3+4=7 by histology but overall good news I think. Next milestone will be first PSA test at the end of November.

I also had my TWOC (Trial without catheter) and thankfully passed! The catheter had got really uncomfortable the last few days perhaps because I was moving around more so it was relief to have it removed, although must admit it actually quite hurt coming out! 
Incontinence wise I’m quite pleased, there is some leakage but I feel like I have decent enough control, let’s see what next few days bring. Back to the Squeezy app!

Recovery from surgery is going well, drain wound hasn’t fully closed yet and has been redressed but others healing nicely. I’m off pain meds now and moving much more freely, especially minus the catheter. The right hand side is sorest area, will get the odd stabbing pain on movement and it lets me know generally if I’m doing too much but overall feels like things are progressing.

User
Posted 11 Oct 2024 at 21:03

Thanks for your update Rob. Negative margins is great news. I'm pleased to hear your recovery is going well, long may it continue. 👍

User
Posted 28 Nov 2024 at 11:48

Thanks for the update Rob. You doing well, mate, and great news about your PSA. I'm going to the Club, and I will have a celebratory pint with you.🍻

User
Posted 28 Nov 2024 at 13:38

Hi Rob,

Good to hear your recovery is going well.

As for feeling like your world was turned upside down, I remember that. You've been through a real ordeal and it'll probably take time to get your head around things, but you'll get there.

As for the pump.. if you're having difficulty getting one on prescription, I think it's worth buying one from lovehoney as a cheap alternative to use for physio. Mine is still going strong after almost 5 years and I prefer it.

Good luck, 

Kev.

Edited by member 28 Nov 2024 at 13:59  | Reason: Typo

User
Posted 28 Nov 2024 at 20:47

Hi Rob, great news you are doing well, keep positive, things will get better im sure. Im 7 months post surgery and at the time couldn't see myself doing much for a long time and it seemed like the end of the world and I  was worried the incontinence would stop me, however this hasn't been the case and now dry so I'm sure it will all be positive for you soon. Just a thought, does the hospital you were treated at have an ED specialist nurse? If so they may be best to talk to about the pump. Luckily I haven't had to go back to my doctor about anything as it's all been dealt with by the hospital. I think the doctors appear to be much more keen to protect their budget as they dont even want to take bloods for the hospital psa tests. The hospital prescribed the tadalafil, pump everything for me. 

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User
Posted 06 Oct 2024 at 13:53

Hi Rob.

Sorry to see that you had to join the  Club, but welcome mate.

An excellent first post.

I think the right decision was taken to have radical treatment  based on your T2c staging and family history. I wish you and your young family all the best.

Please keep us updated with your recovery and best of luck with your post op results, mate

 

 

User
Posted 06 Oct 2024 at 14:01

Many thanks mate, appreciate it. I guess it’s not the club you’d pick but once you start talking to people about Prostate Cancer it doesn’t take long to realise how many families it impacts. 

User
Posted 06 Oct 2024 at 15:01

Hi Rob
Sorry you and your family have been affected by this but you’ve got over the first stage (the decision making and the surgery). You do have a long road ahead, and there are various stages along that road…

firstly in getting your body back to pre surgery health and fitness, take it slowly and don’t overdo it

Secondly there’s the incontinence, some people are very fortunate and dry pretty much straight away post catheter removal; some may never get fully continent but most seem to fall somewhere in between the two stages

Thirdly, there’s the ED side of things, hopefully you’ve had nerve sparing surgery? …but even then, the nerves have taken a battering, so erection function could take up to two years but please read the posts on here for more advice and experience when the time comes. It’s not something you will need to focus on right now. Although there should be some consideration given for maintaining penile health once your catheter is out and hopefully your urologist will speak about that (but make sure you prompt the discussion if not).

Finally…I’m in agreement, the mental side of this whole process is relentless! It’s during every phase, once you’ve got over one hurdle, you start worrying about the next, but such is life I guess…I can’t tell you not to worry but you will get through and the things you’re stressing about today will be yesterdays problems soon!

We are a few months ahead of you, my Husband at 61 was T2C Gleason 3+4 and had surgery in January, the histology confirmed the grading and all contained so that was good. Catheter had to be in 4 weeks which as you say, was uncomfortable (due to damage to bladder join)…and for him the incontinence has been a problem, still about 75% incontinent, so a very small and slow improvement, but that may be due to the damage and he may require more surgical intervention. That said, he is managing it really well and you kind of adapt and just get on with life! The ED is the issue we have now started to tackle and it’s a work in progress!

Like you, we find this forum so helpful and reassuring so just ask away if you need info, there will be someone who can help!

Keep on talking to your partner, try and keep positive, a sense of humour does help and know you’re not alone!

Take care

Debbie

Edited by member 06 Oct 2024 at 15:03  | Reason: Sp

User
Posted 06 Oct 2024 at 16:34

Hi Debbie,

Thank you for your message and I wish you and your Husband well, I hope he continues to improve.

I can admit that the incontinence side frightens me a bit. I’m definitely expecting it post catheter removal and key for me is getting to a point that I can get back to life as it was pre-surgery in terms of going out and doing things with the kids, even playing football myself. I can accept wearing pads and so on but will struggle if it’s more than that. Surgery went to plan in that regard so fingers crossed.

My surgery was nerve sparring so whilst ED definitely feels like a problem for another day at the moment(!) I’m hopefully in time things will be good although also realistic that it might be different at best! My Urologist definitely takes this aspect seriously and prescribed Tadalafil 5mg pre-surgery to resume post catheter removal and has spoken about pumps and specialist referrals etc.

Having a real easy day today, in fact just had an afternoon nap! Going to try and make the most of some time away from work as much as possible, need it mentally and physically.

 

User
Posted 06 Oct 2024 at 19:16

Hi Rob, you are a young fit person so you have given yourself every chance of a good recovery. However just remember that recovery speed is different for everyone and its not a race, don't get despondent if you aren't as quick as others. Keep your chin up, take the small wins as they come and you'll get to the finish line.

All the best for a good recovery and remember to give your family big hugs, as this time is just as hard and unsettling for them.

User
Posted 06 Oct 2024 at 21:24

Thanks Neil, wise words mate, definitely is tough for those around you, we are trying to stay positive and have a laugh as much we can but it’s not always easy.

User
Posted 11 Oct 2024 at 20:48

Had my post op consultation today, negative margins achieved and everything was contained. My Gleason was upgraded to 3+4=7 by histology but overall good news I think. Next milestone will be first PSA test at the end of November.

I also had my TWOC (Trial without catheter) and thankfully passed! The catheter had got really uncomfortable the last few days perhaps because I was moving around more so it was relief to have it removed, although must admit it actually quite hurt coming out! 
Incontinence wise I’m quite pleased, there is some leakage but I feel like I have decent enough control, let’s see what next few days bring. Back to the Squeezy app!

Recovery from surgery is going well, drain wound hasn’t fully closed yet and has been redressed but others healing nicely. I’m off pain meds now and moving much more freely, especially minus the catheter. The right hand side is sorest area, will get the odd stabbing pain on movement and it lets me know generally if I’m doing too much but overall feels like things are progressing.

User
Posted 11 Oct 2024 at 21:03

Thanks for your update Rob. Negative margins is great news. I'm pleased to hear your recovery is going well, long may it continue. 👍

User
Posted 28 Nov 2024 at 11:39

First post op PSA test came back undetectable yesterday, less than 0.03. Such a relief, was pretty anxious leading up to it and feels like a big step forward today (at least until the next one in Feb!). I guess PSA anxiety is something we all have to live with, hopefully it gets easier as time goes on.

Recovery from surgery is going well. I'm pain free other than the odd twinge and getting more active all the time. Incontinence is manageable. I've been dry at night pretty much from the off and just using one pad a day. I'm more prone to leaking later in the day or if I've been busy but I think there is definite improvement. I'm getting more confident, made it to Arsenal at the weekend, which was a bit of a milestone for me, been a part of my life since I was a kid and knowing how busy the toilets are worried me. Skipped the pub beforehand but it was ok. I've been watching my boys play as well and its all helped me feel more normal. Surgeon said I can resume my weekly 6-a-side but I might hold off a little bit longer on that.

No signs of life yet on the ED front but I'm continuing with the Tadalafil 5mg and have been told to start using a pump (although having a bit of trouble getting GP to prescribe). Still early days I guess so still hopeful things will improve.

Overall I'm feeling more positive but my confidence has taken a knock and it does make you worry what will go wrong next! One minute I felt fit and healthy, the next my world was turned upside down, going to take some time before those doubts disappear but definitely a step in the right direction.

 

User
Posted 28 Nov 2024 at 11:48

Thanks for the update Rob. You doing well, mate, and great news about your PSA. I'm going to the Club, and I will have a celebratory pint with you.🍻

User
Posted 28 Nov 2024 at 11:52

Thanks Adrian, hope you are good mate.

User
Posted 28 Nov 2024 at 13:38

Hi Rob,

Good to hear your recovery is going well.

As for feeling like your world was turned upside down, I remember that. You've been through a real ordeal and it'll probably take time to get your head around things, but you'll get there.

As for the pump.. if you're having difficulty getting one on prescription, I think it's worth buying one from lovehoney as a cheap alternative to use for physio. Mine is still going strong after almost 5 years and I prefer it.

Good luck, 

Kev.

Edited by member 28 Nov 2024 at 13:59  | Reason: Typo

User
Posted 28 Nov 2024 at 20:47

Hi Rob, great news you are doing well, keep positive, things will get better im sure. Im 7 months post surgery and at the time couldn't see myself doing much for a long time and it seemed like the end of the world and I  was worried the incontinence would stop me, however this hasn't been the case and now dry so I'm sure it will all be positive for you soon. Just a thought, does the hospital you were treated at have an ED specialist nurse? If so they may be best to talk to about the pump. Luckily I haven't had to go back to my doctor about anything as it's all been dealt with by the hospital. I think the doctors appear to be much more keen to protect their budget as they dont even want to take bloods for the hospital psa tests. The hospital prescribed the tadalafil, pump everything for me. 

User
Posted 29 Nov 2024 at 11:07

Thanks Kev and Neil. I think part of the problem might be I was treated privately through work health insurance but prescriptions are going back to the GP. I've just requested an alternate pump as recommended by the surgeon as I was told by GP first choice was not available on NHS. If no luck I think I will buy one. 

There is an ED specialist nurse I've been referred to but health insurance won't pay for the appointment. To be honest ED is only coming into focus for me now, I think I'll speak to the GP and try and get an NHS referral if I don't get anywhere.

User
Posted 29 Nov 2024 at 11:52

Originally Posted by: Online Community Member
 I think I'll speak to the GP and try and get an NHS referral if I don't get anywhere.

Rob, if all else fails join the Prick a Dick Club.

The wife gives it a two star rating but it's better than nowt.😁 

User
Posted 29 Nov 2024 at 11:57

Ha, it was mentioned by the surgeon actually, whole different type of foreplay that!

User
Posted 29 Nov 2024 at 14:31

Originally Posted by: Online Community Member

Ha, it was mentioned by the surgeon actually, whole different type of foreplay that!

I didn't know he knew my wife! 😂

 
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