My diagnosis journey so far.

User

Posted 23 Nov 2022 at 14:30

My a PSA is 3.98. A Gleason 3+4. Due to the location of one of the masses, at the edge of the capsule, it has been graded a T3a disease at CPG 4 stage; meaning high risk of Cancer growing quickly and spreading outside of prostate.

Needed a few days to figure things out. Called back the specialist team to confirm my wish to go ahead with the Operation. Within 20 hrs of making that call I had met with the specialist team, the surgeon, signed all forms and received a call from the Hospital confirming my Surgery spot.

So I am booked in for a Robotic prostatectomy on 12th Dec 2022 and a follow on appointment 10 days later to remove the catheter.

If that wasn't impressive enough I then received a follow on email with a link to a 25 min explanation and tutorial video of what to expect pre, during and post Op. How to empty the catheter, when to shower, managing incontinence and some tips and tricks on dealing with a blockage in the catheter.

The specialist nurses are so very good at disseminating information, they are happy to walk through it as many times as is needed and they convey a real sense that nothing is a bother.

Take care all

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1sr Dec 22' update

On a slightly lighter note:

Has anyone received one of these. "Just can't what please help" cards. They offer the holder a reason to use the facilities of an establishment you are not visiting but need to go. I received it from the support team at the hospital. I'll give it a try if I need to use it and let you know how it's received. 😂

9th December update

A few days before my prostatectomy surgery and a mixture of relief and trepidation is spinning around my head. I am glad it's coming out and aware this journey can bring other unwelcome visitors. But I take solace knowing the processor surgeon, the wider team and nursing support will do their very best.

Take care all.

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Edited by member 09 Dec 2022 at 07:40 | Reason: My journey update

User

Posted 23 Nov 2022 at 17:29

What a remarkably good experience of the NHS. I find the NHS to be adequate, but they seem quite capable of dropping the ball, and if you don't pick it up and give it back to them, it's game over.

Of course different trusts will have different approaches, and may manage one speciality well and fail in another one. Still at the moment you seem to be in a trust doing a good job for your condition, but keep your eye on the ball.

Dave

User

Posted 23 Nov 2022 at 19:28

Best of luck with the operation KFP. My husband had his op on the 21st December last year, so our Christmas was very different. A year on however apart from ED (he hasn’t had any medication to help with this) life is just as good as before in relation to PCa diagnosis. I’m not saying it has took this long for him to feel good…..we had our first holiday of this year in March and he was feeling pretty good even then.

I’m sure your team have drummed it into you but keep up the PFE’s, I’m sure it can make a difference.

Lots of pre and post op advice on this forum if you ever need it.

Wishing you all the best

User

Posted 23 Nov 2022 at 21:46

Hi KFP, You've done well to get in before Christmas. I haven't heard of the CPG code before but note that your T grade is the one factor that takes it there as your psa and Gleason aren't high risk. Your T grade appears to be marginal as well. Mine was T2a T3? which had me worried although post op it came back as negative margin.

My op was 16th December and the catheter and staples were in until just before new year. It's not bad being ill in winter as you aren't wanting to get out and doing things and you can wear big clothes over your continence pads.

All the best, Peter

Edited by member 23 Nov 2022 at 21:47 | Reason: Not specified

User

Posted 24 Nov 2022 at 05:54

Hi Dave,

Agree with you and maybe I have lucked out, let's see how the experience of the post Op goes.

What I was knocked over by was the care and time the Macmillan nurses have. I now have one point of contact who is quite simply amazing.

It's still very early in my own journey and reading others account of their recovery is valuable.

Take care,

Kevin

User

Posted 24 Nov 2022 at 06:07

Thanks Elaine,

Your account of your husbands recovery journey is really helpfu, thank you l. Whilst each recovery is different is was great to understand it from your side.

OK now let's talk about the PFE's. Good grief Elaine what a challang finding it is let alone repeating this throughout the day. I am now managing to keep up regular PFE's now. I also have a laugh with my daughter's who have both gone through this post child birth's of their own. In their words, welcomed to the world of women's challanges Dad. It does lighten the mood a lot when they ask me if I have been doing them. Not a conversation I would thought I would have..... Ha ha ha .

Take care

Kevin

User

Posted 24 Nov 2022 at 06:14

Hi Peter,

Thanks for adding your experience to my understanding. It is always a little confusing with the variouse measures and how they can influence a overall readings.

I am greatful they are removing my prostate. I have no interest in being to clever with managing this, just get it the hell out of me.😂

You are spot on about the seasonal timing and fingers crossed my catheter come out, ouch, on the 22nd Dec.

Take care,

Kevin

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