Operation Planned

User

Posted 30 May 2023 at 12:08

Probably like a lot of you on here, I never thought I would be typing into a forum regarding Prostate Cancer, but here I am. Everyone journey seems to be different, as we are all different.

I advent been ill, felt ill or had any symptoms. to be honest Im not sure what symptoms would be. I asked the doctor for a prostate check after a visit for a cough. My wife said my nigh timer visits to the loo were increasing, although I have always had what I call a nervous bladder. At least two trips every time just as we leave the house. I had a PS4 check, then an exam, then am MRI, biopsy, bone scan, CT scan, then someone was talking to me about Gleeson scores, add these two numbers up etc. All a bit surreal. Like most things in life I have tried to trivialise it, be upbeat, make jokes etc. Feel slightly different inside of course, but dont want to project my fears onto my wonderful wife or children. Anyway I am having an operation at UCH within a week, luckily I am not too far from London, and am told it is a good hospital. They have said they can't spare the nerves but the bone scan was clear and it hasn't spread. The process so far has been quick and the NHS have been quick so far, but it's a lot to take in, information and everything else. I dont know how incapacitated I will be in the weeks after, dreading the thought of the catheter , and just hope everything goes well. They tell me I need to do some walking afterwards every day, not sure how easy that will be. Once diagnosed i joined her gym to try and get fit and lose some weight and surprisingly I enjoyed doing that so hope at some point to return. Im 58, and keep being referred to as someone young, by the hospital, not sure thats how others see me.

Just writing it all down seems to help for those in the know I have grade group 3 Gleason score 7 4 and 3. If you read this, thank you.

User

Posted 18 Sep 2023 at 12:29

It's been a little while since I posted. Now 3 months since I had the operation and life has returned to almost normal following surgery. Back at work, been to the gym but taking it easy. Incontinence minor, and not really an issue.

Waiting ti be referred to ED clinic. Just has a call from the hospital to say my first PSA test since the operation has come back at less than 0.01. Obviously Im really pleased but mindful of others, just wanted to say I hope you are all dealing with your own journey with the same love and support I have had. If anyone has been recently diagnosed and is wondering what the ops like happy to share my experience if it helps. Everyones journey is of course different.

User

Posted 30 May 2023 at 15:32

Hi Stevie. Sorry to hear about your diagnosis. You are in good hands at UCH though, as they perform a very high number of operations there.

It's true that the catheter isn't very pleasant, but it is bearable and hopefully won't be in for too long. Recovery speed seems to vary a lot from one person to the next. I think the main thing is to take it easy and don't push things too much at the beginning. It's good that you will have the experienced UCH clinical nurse specialists to ask about any issues that arise. In all my dealings with them, I found them to be quick and responsive, especially via email.

Wishing you lots of luck with it all.

User

Posted 30 May 2023 at 17:43

Hi Stevie, Sorry to hear about your diagnosis and your impending surgery. I am of a similar age to you and had my surgery just over a year ago at UCLH. My PSA was 19 or thereabouts with a Gleeson score of 7 (3+4). Recovery has been sort of mixed. From day 1 I was fully continent (day time), however hit and miss night time, so still use pads in bed otherwise the bed will be soaking wet, bit like bed wetting! As for ED, my nerves were sparred, however no erections, that is my biggest regret not being able to no longer have an erection - I wish this possibility was explained to me pre-surgery.

My PSA remains undetectable, so I guess that factor compensates for my loss of erection!

User

Posted 13 Jul 2023 at 18:02

was it really that long ago that i posted. Had successful surgery in London Beginning of June. Am told it went well, but await results. Went home next day. Although having a low (or no) pain threshold the operation soreness was bearable but not wanting to put anyone off, I personally struggled with the catheter, I found it uncomfortable and easier to sleep downstairs in the chair. That led to a change in sleeping patterns, with some afternoon naps. Had the catheter out after two weeks and was able to perform sufficiently well enough to go home a few hours later.

All wounds have healed nicely, I am up to 6-7000 steps a day walking. Not doing anything strenuous but if I do forget I usually get a twinge to remind me to stop stretching, bending etc. Doing my exercises everyday. I dont wee every time I stand up now which is progress. Two pads a day , and wear something at night.

Unable to stand or sit for long periods of time, and get a feeling similar to being kicked by a mule (Im guessing ) if I do sit or stand for long periods. My ability to concentrate for long periods has diminished, not sure if anyone has experienced that. I often only watch half a film , or can only read for 20 minutes or so.

Haven't had my results yet but I am trying to be very positive and it will either be good news or onto other treatment, ending in good news. Can't see any point in being the other way.

So not sure what to expect over the next couple of months, perhaps those of you further down the line can let me know. I have been out, for walks and once for a coffee. just take a rucksack, although it's been more of a comfort blanket than needed anything. I dont want to be controlled for this and am the type of person that won't be embarrassed to nip to the loo with my rucksack if im out. Next big step will be to visit friends or a meal out.

I hope, whoever reads this you are in good spirits, and winning your own battles.

User

Posted 13 Jul 2023 at 22:45

Hi JedSee

Some good advice there. I have a telephone call with the urology team next week and will discuss when the ED treatment will or could start. Weill look at getting a pump in the meantime.

User

Posted 18 Sep 2023 at 12:40

Great to hear another success story after surgery.💪💪💪

All the best with your recovery, you seem to be doing really well!

Derek

User

Posted 18 Sep 2023 at 13:09

As someone who had prostatectomy 12 years ago, I think you are doing well. The most important thing for you to do now is continue doing your pelvic floor exercises and get a pump to gradually but steadily start training your penis and let it 'wake up'. Don't rush when using the pump and don't get discouraged, it takes time but it works. I suffer from ED and having been using the pump since recovering from the surgery. You may find my thread on how I deal with my ED at:

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

If you are interested in knowing how the pump can help to re-establish your sex life send me a private message and I will respond.

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

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User

Posted 30 May 2023 at 12:30

Hi Steve,

I cant comment on surgery as I wasn’t given that choice even though my Gleason score was the same as yours. It appears that in Scotland they will not do the Op if it’s spread anywhere, including the Seminal Vesicles as in my case. The guys in my Maggies Group I know who’ve had the Op have done really well, but from what they tell me you need to take it easy and not overdo it after the Op. they said the catheter was annoying more than anything else but it’s removed within a few days. Also, if your not already doing them do some Pelvic floor exercise before the Op…you won’t be able to do them for a while after the Op but might help with continence issues.

Anyway all the best for your Op…I hope it goes well for you.

Derek

User

Posted 30 May 2023 at 12:36

Thanks Derek I have the app on my phone for the pelvic floor exercises, I have been told they are important to aid recovery

User

Posted 30 May 2023 at 15:32

Hi Stevie. Sorry to hear about your diagnosis. You are in good hands at UCH though, as they perform a very high number of operations there.

Wishing you lots of luck with it all.

User

Posted 30 May 2023 at 17:43

My PSA remains undetectable, so I guess that factor compensates for my loss of erection!

User

Posted 13 Jul 2023 at 18:02

Haven't had my results yet but I am trying to be very positive and it will either be good news or onto other treatment, ending in good news. Can't see any point in being the other way.

I hope, whoever reads this you are in good spirits, and winning your own battles.

User

Posted 13 Jul 2023 at 20:00

Hi Stevie G,

I think you are doing very well so soon after surgery. You will probably make even faster progress now that the catheter is out. Have you been referred to E.D. clinic? Start using Cialis or Sindenafil a.s.a.p. and vacuum pump too. If there is a delay in referral to E.D. clinic, you could do worse that buy a cheap pump from 'Lovehoney' or similar online shop until you get the real deal from the E.D. clinic. Prices start at about £25.

Best wishes,

JedSee.

User

Posted 13 Jul 2023 at 22:45

Hi JedSee

Some good advice there. I have a telephone call with the urology team next week and will discuss when the ED treatment will or could start. Weill look at getting a pump in the meantime.

User

Posted 18 Sep 2023 at 12:29

User

Posted 18 Sep 2023 at 12:40

Great to hear another success story after surgery.💪💪💪

All the best with your recovery, you seem to be doing really well!

Derek

User

Posted 18 Sep 2023 at 13:09

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

If you are interested in knowing how the pump can help to re-establish your sex life send me a private message and I will respond.

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 04 Apr 2024 at 15:49

After some advice from the group please. After my surgery last June I had a PSA test in September that was undetectable (less than 0.01) Should I be asking for another PSA test, or do people not have a second one once the first one is low. If you have been tested what was the interval between the two.

I am still under the hospital andrology department but have had no follow ups after my first PSA regarding the cancer.

Wishing you all well.

User

Posted 04 Apr 2024 at 16:06

Originally Posted by: Online Community Member

After some advice from the group please. After my surgery last June I had a PSA test in September that was undetectable (less than 0.01) Should I be asking for another PSA test,

Hi Stevie,

As far as I'm aware, its usual to have a PSA test every 3 months during the first year after your op. However, I think NICE guidlines stipulate PSA tests at least every 6 months for the first two years post op.

It's brilliant that your last test was undetectable but I'd chase them up for another.

Edited by member 04 Apr 2024 at 16:23 | Reason: Typo

User

Posted 07 Apr 2024 at 00:42

Good lord Stevie! This is dreadful! You should have been having a PSA test at least every 6 months and most surgeons prefer every 3 months for the first two years and 6 monthly until the 5 year mark. If all results stay low, you should go to annual PSA testing from year 5 onwards but will need PSA tests for the rest of your life.

Some hospitals keep the PSA testing responsibility but most hand it back to the GP after the RP. My guess is that you were supposed to organise the PSA tests yourself by arranging with your GP practice.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 07 Apr 2024 at 13:39

HI Stevie,

How long and how frequent PSA testing depends on your situation. I was told by my surgeon I needed to have 3 monthly for the first year and then 6 monthly after that up to 5 years, followed by annually from then on if all tests remained undectable. They could keep you on the 3 monthly for longer if things are less favorable and they wanted to closer monitoring.

I had to arrange this with the GP, although in reality I am monitoring myself. I would personally confirm with your Surgeon/ oncologist as to the schedue you should follow. In any case you should have had another 2 tests by now since September last year as I think 3 monthly is a minimum during the first year.

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