My PC Experience

User

Posted 12 Apr 2024 at 07:44

Today is the 1st anniversary of my op. It still seems like yesterday. How time flies when you are having fun! I’m off to celebrate by going to aintree tomorrow for the National for the 1st time. I am very good at selecting donkeys so any tips gratefully received!

An appropriate time to reflect on things

My outlook on life has changed. I’m 59 later this year and now seriously thinking about early retirement. I want to enjoy being retired and the last year has shown me not to take my health for granted. I don’t want to keep working only to then find my retirement is blighted by ill health from early on. That’s not something I would have thought about before.

At this stage my prognosis is as good as I can hope for. Last 2 PSA tests <0.001 and clear margins in post surgery histology. My next appointment in July with the surgeon is a telephone one and in the nicest possible sense after that I hope I never talk to him or meet him again! I am realistic enough though to realise there could be a kick in the teeth (wrong body part - nuts is a better expression!) and a reoccurrence sometime later is a possibility hence my thoughts about early retirement.

Physically health wise things are getting back to normal. I’m back at gym but wary of heavy weights as I feel a pull in the stomach when lifting. I’ve been checked for a suspected hernia and there was nothing - the advice was it’s things settling down. Since diagnosis I’ve lost and kept off around 15kg. Only downside is it’s cost a fortune in a new wardrobe!

Early on I had issues with continence or rather lack of it. Things have improved and I’m on 1 level 2 pad a day and thinking next delivery go to level 1. I’m lucky that where I live pads are supplied by the local health trust. I do need them. Some days I’m dry but others for no reason I’m quite wet. It’s not dominating my life like it used to and my only concession is I don’t use the communal showers and changing room at the gym.

Now for the big one if you pardon the pun (I wish it was!). I was 50% nerve sparing and despite regular use of the pump and sildenafil not a sausage! I also wet myself when using the pump so not the most enticing prospect for my wife. I’m over 30 years married and my wife is post menopause. I’ve lost some of my libido as well. There are worse things in life. I keep trying and who knows. Secretly I suspect my wife thinks her prayers have been answered!

In summary I am lucky I had an early diagnosis and treatment options which is what keeps me going.

Hope people find this summary useful in their own journey.

Thanks to all contributors on here. Even though I may not reply the conversations and advice are really useful.

I should also add I am in a support group which I find really useful and helpful. We have very open and honest conversations about subjects I would have not dreamt about discussing last year with strangers. I do suggest people consider joining a support group even if they think they are not struggling. You maybe surprised at what you get from it.

User

Posted 12 Apr 2024 at 08:52

Hello mate.

Thank you very much for the update. We are in a very similar position, I'm about 2 months in front of your had the op Feb 2023.

I'm surprised, as I've become a full time addict of this site 😁, that I somehow haven't commented on your thread.

I posted a similar conversation a year post op. Heres a link :

https://community.prostatecanceruk.org/posts/t30214-Almost-a-year-on-after-RARP

I'm very pleased to see your recovery is still improving and we're obviously very lucky to both have undetectable PSA, long may it continue.

I seemed to have fared a little better re incontinence, but after my op the surgeon actually commented on how very well the bladder part had gone. Regarding ED I've had to resort to Inivicorp which is very good and now very reliable. I would highly recommend it. Have you had an ED clinic appointment?

I'm envious of your weight loss, I've put on a few pounds.

As for the National. I've loved horse racing all my life. When I was only 16 years old, I was working in the bookies ' chalking the boards' at that time you couldn't see more then a yard in front of you due to the smoke!

What I've learned about racing is you rarely win and you"re as likely to pick a winner purely by a name, number, or colour of the silks, than you are studying form of relying on a tipster.

Best of luck to you in life and at Aintree.

Late edit. I've just checked the runners and riders for tomorrow. There are a couple of names that could be associated with our disease. Meetingofthewaters (incontinence 😁) about 8/1 and Chemical Energy (my Invicorp jabs 😁) about 33/1. I see you're a keen walker, so Corach Rambler who's about 6/1 favourite maybe another option?

Edited by member 12 Apr 2024 at 09:12 | Reason: Late edit

User

Posted 12 Apr 2024 at 09:35

Thanks. So true about the National. When my daughter was younger she had a fantastic track record on the national. Invariably got a couple placed each year and one year managed a 1234. Not that she won much at a £1 each way! She chose solely on name and colour! She lost interest and the ‘knack’ after she was about 12. The joy of the innocence of youth. Those tips of yours are probabaly as good as anyone’s!

I’ve mentioned invicorp to my wife but it got a lukewarm response. It’s not something I’m pushing at the moment as I’m not there yet either as I want to get my continence improved.

Weight loss was down to the misery no 3 b diet - no booze biscuits or bread! Worked wonders for me. I’ve introduced them again but as a treat by exception rather than the norm.

Let’s see how those tips go tomorrow!

User

Posted 12 Apr 2024 at 10:04

Originally Posted by: Online Community Member

When my daughter was younger she had a fantastic track record on the national.

My eldest son, Ben, was a year old in 1980. That year, I numbered some Scrabble tiles and got him to pick one. He picked no 6. It was Ben Nevis. What a coincidence, I thought! I put a £1 EW on it it and it won by 20 lengths at 40/1. I bought him a packet of Farleys Rusks to celebrate. I bought his mum a couple of bottles of wine, and about 9 months later, he had a brother. 😁

Edited by member 12 Apr 2024 at 10:16 | Reason: Additional text

User

Posted 14 Apr 2024 at 07:09

After an excellent day at the National I can now safely say that surgery has not blunted my uncanny ability to select donkeys in races!!!

User

Posted 14 Apr 2024 at 08:32

😂 Me too mate, me too. 😂

My best selection Corach Rambler, fell at the first. It obviously didn't fancy a 4 mile ramble yesterday afternoon.

Edited by member 14 Apr 2024 at 09:02 | Reason: Typo

User

Posted 14 Apr 2024 at 09:09

MGOR.
Glad you had a good day at the national, when picking your horses you should have studied between the lines & looked forward to the day that you are proudly STANDing at the bottom of the bed shouting I AM MAXIMUS.

All the best Jeff.

User

Posted 14 Apr 2024 at 09:36

To add insult to injury my wife had said pick I am maximus as it’s her favourite film. She took great delight in pointing out it was proof that I always ignore her!

Edited by member 14 Apr 2024 at 09:37 | Reason: Not specified

User

Posted 14 Apr 2024 at 10:17

Originally Posted by: Online Community Member

you should have studied between the lines & looked forward to the day that you are proudly STANDing at the bottom of the bed shouting I AM MAXIMUS

Or, as in my case, had they'd been a runner called Wee Willy. 🙄

Edited by member 14 Apr 2024 at 10:54 | Reason: Typo

User

Posted 14 Apr 2024 at 10:34

I actually tried my own philosophy but standing at the bottom of the bed shouting, I am panda boy doesn’t have the same ring to it. 😇

User

Posted 01 Aug 2024 at 13:14

Here I am 14 months post op and just had what proved to be hopefully my final consultation (in the nicest sense) with the surgeon (by phone). PSA undetectable at <0.001 which as good as I can hope for. Fitness wise I’m as good as I have been for a long time but still being wary of heavy weights and abs exercises. Perhaps I’m now just using that as an excuse now but better safe than sorry! I do leak but not as much and only when sneezing coughing laughing or if say gardening / exercise. A gentle drop if anything. I’d describe it as like an old tap with a leaky washer and an occasional drip! I could probably get away with no pads most of the time but wear one (level1) for security especially in work. Only change once a day apart from a recent walking holiday when the combination of 10 mile walks hay fever and more beer than usual had an impact. As to ED well apart from occasional stirrings but nothing to show for it nothing natural yet (50% nerve sparing) . The stirrings are more regular (that’s relative!) and gentle reminder of what it could be. I live in hope rather than expectation! One issue is that when I do get excited I wet myself so a bit of putting for my wife. She is very understanding and probably secretly relieved! These side effects are a small inconvenience and do not impact on my life. A small price to pay for hopefully a positive outcome although still early days. I consider myself lucky - I was diagnosed early and have a chance of treatment. There were others in the waiting room whose prognosis was not as good. Hope this helps someone with their own journey but remember everyone is different.

User

Posted 01 Aug 2024 at 14:30

Great post mate, thanks for sharing. 👍

Have you ever considered ED injections they worked for me when all else failed?

Late edit.

Whoops sorry. I should have read back through the thread. I see you responded earlier to a similar suggestion from me.

Edited by member 01 Aug 2024 at 14:35 | Reason: Late edit

User

Posted 01 Aug 2024 at 16:38

I did say to my wife that a little prick would make a big prick if we got invicorp - her response that would be a first!

User

Posted 01 Aug 2024 at 18:29

That’s encouraging to read MGOR. I’m 2 weeks post op, and just starting to adjust to things. It sounds like you’ve made a pretty good recovery overall, which is great 👍

Ian.

User

Posted 01 Aug 2024 at 19:11

Originally Posted by: Online Community Member

I did say to my wife that a little prick would make a big prick if we got invicorp - her response that would be a first!

😁

I have a wife like that. She calls my penis Justin.

User

Posted 28 Jan 2025 at 07:40

After what I thought was my final visit to the hospital how wrong I was! A routine MOT from my GP picked up microscopic blood in my urine so off I was sent back to urology for scans and camera in a delicate place! That bought tears to my eyes….. End result nothing of note found and it could be just settling post surgery and I maybe one of those guys who will have microscopic bloods going forward. That was a new one on me - told nothing to be to concerned about unless it comes visible. Something else now to watch for and be monitored. It’s never ending this journey- once the NHS get their tentacles into you there is no escape from the system. It’s a bit like the Prisoner! Anyway after another PSA test I was called back to the hospital only to be greeted by the nurse saying what are you doing here? Apparently I should have been put on remote monitoring. Anyway always good to catch up with the nurse for reassurance. My PSA was 0.002 so basically undetectable and nothing to worry about unless it gets to 0.2 so a long way to go. I was sent away with I don’t want to see your here again….!!!! So nearly 2 years post diagnosis I’ve been ditched by the nurse (in the nicest sense!) my results are as good as I can hope for and it’s now remote monitoring for 10 odd years with fingers crossed there’s no reoccurrence. I could not really ask for anything else. As for side effects. I’m beginning to get some sensations down below but nothing to write home about. The little blue pill helps to an extent backed up by the pump. It’s not the same but at least I’m here to enjoy and have fun trying. It could be worse. The downside is the incontinence. I’m on 1 pad a day and it’s needed. After a steady improvement I’ve now plateaued and guess this may not be it. I also leak when excited so that’s not much fun. I keep squeezing and who knows I may improve. Medically I’m probably judged as continent but I’m not. I must have been a nightmare to potty train as a baby!!! I have no idea if this is normal post op or if I am one of the unlucky ones. Anyway life goes on and there are a lots of things that could be worse. The $6 million question - would I change my decision on treatment options knowing what I do now? The answer is no. I’m happy with my decision despite the side effects. My main rationale was to get rid of the cancer and so far that seems to be the result. I hope this helps people who have to make a decision on treatment and also act as pointer on what happens post op. Remember though everyone is different. Onwards and upwards - time to start thinking about retirement!

User

Posted 28 Jan 2025 at 09:31

Originally Posted by: Online Community Member

It’s never ending this journey- once the NHS get their tentacles into you there is no escape from the system. It’s a bit like the Prisoner!

Hello again.

I entirely agree, mate. I'm beginning to feel like a clapped out car going for an MOT. The more parts they check, the more faults they find.

Anyway, thanks for the update, and it's fantastic news about your undetectable PSA. I'm sorry to hear that you still have a bit of incontinence and ED issues, but there's still a chance things will improve with time.

I'm coming up to my two year post op PSA check. I've got everything crossed, that like the previous ones, it will come back undetectable. How often are your PSA checks now? If my next one is clear, I'm hoping that they'll give me checks every six months instead of every three months.

I still get no stirrings down below. I have to rely on penile injections to raise the living dead, but the peeing when 'excited' seems to have stopped.

I was luckier than a lot of you guys. I was retired when PCa entered my life. I admire how you cope with dealing with the disease and work commitments.

I hope that your recovery continues and wish you and your family all the best in the future.👍

User

Posted 29 Jan 2025 at 07:18

I’m now on 6 monthly tests and remote monitoring which is good. My wife says I’m now an old banger not even a classic and ready for the scrap heap. When she says she should trade me in for a younger model (I hope she’s joking!) I remind her that’s she’s on the shelf and would not get finance!!! The joys of a 30+ year marriage that we can joke like that. Good luck with the tests. I’ve been offered injections but I’m not there yet - seems to create an expectation and loses the spontaneity which is all part of the fun not that in my condition there’s anything spontaneous any more ! You have to laugh….

User

Posted 18 May 2025 at 08:11

Life goes on. Now just over 2 years post op and on remote monitoring. My latest PSA was <0.001 so that’s good and the surgery seems to have done the trick for now but I’m not counting my chickens. The incontinence is still there but minor and 1 pad a day for security. It hasn’t stopped me doing anything. Yes there’s issues with ED but nothing that a sense of humour, changing things round and a bit of experimentation can’t solve! Other health issues are now rearing their head. I now have chronic kidney disease which sounds worse than it is so far. News to me! The GP reckons it could be linked to the PC as since removal things have stabilised. I also had an argument with a bleeding stomach ulcer caused by a bacterial infection which I didn’t know anything about and lost - that was an unexpected 5 nights in hospital. Anyway as a result of all that I’ve decided it’s time to retire to start travelling whilst I have my health so I am now on a steep flight path to the retirement runway. A bit earlier than I expected but I’ve come to realise you can’t take your health for granted.

User

Posted 18 May 2025 at 09:08

Excellent PSA result. Sounds like you are managing incontinence and Ed issues.

I think retirement is a good idea, especially if finances allow and you want to start travelling before any health issues get in the way.

Good luck.

Kev.

Edited by member 18 May 2025 at 09:39 | Reason: Added note

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