My husbands recent diagnosis of advanced prostate cancer

That sounds really good Gaz.

I’m hoping Rob won’t have his next HT injection, we will get a better indication then of how the surgery has gone and whether he’ll need RT

With regards to histology Ivan, it seems things are as good as could be expected so we have to be happy with that.

It is encouraging that it was graded T2 instead of T3 as originally thought. His Gleason score has increased though from 3+4=7 to 4+5=9 not great if it turns out that there are remaining mets but will just have to deal with that if/when it happens. 

All the scans suggest that all the cancer has gone (which is a very long way from where we were 6 months ago when in Manchester they diagnosed him incurable) of course we’re not so naive to believe it’s always going to be that way but at this stage it’s the best we could hope for.

Rob will have PSA test in February but that isn’t going to mean too much either as he is still on HT. He will have had 6 months of prostap by that point but we are now cancelling his next injection which was due in Feb. So probably May/August tests will give us a better indication.

I’m sure we’re going to still get our bad days where we over think and worry but we’ve had a chat and decided to take things for what they are and what we know at his point. Let’s get on with life and deal with each PSA as they arrive. Although we know there is more chance of recurrence because of the lymph node involvement we’re not in too much of a different position to everyone else who has had this operation….I know most worry when 3 months comes around. 

As suspected with the ‘No lymphovascular invasion’ this can’t really be the case because of the lymph node involvement but it wasn’t detected on histology so we’ll take that as another positive.

How much HT has affected histology we don’t really know and maybe never will.

So all in all it’s good news….bet you’re sorry you asked 😂😂

How are things with you? Is your continence still going well? Hope so x

Elaine , sorry to hear the catheter removal didn't happen, at least you have an idea of some of the process.  As OhDear says the train journey after the TWOC may be a challenge. I have done the eight hour round trip for a ten minute appointment, not the best way to spend your day.

Hope it goes better next time, I am sure you don't need telling to keep him under control and not let him  go running any marathons 😀.

Keep us updated.

Thanks Chris

Hi Ivan,

We’re going to stay here overnight when the catheter is removed. We didn’t fancy getting straight back on the train. I’m worried he’s going to be reluctant to drink too much to try to prevent accidents, but he will still need lots of fluid I assume to try and avoid inflection.

Sounds like things are going well for you. Hopefully it will continue to improve over the next few weeks. Rob did lots of pelvic floor exercises before the op but mainly sat down, we were only told a few days before the op that it’s really useful to do them while walking around aswell, so he may struggle when on the move too.

Keep us posted on your improvements and best of luck.

Elaine

At the moment, although I think I could get away with wearing just my incontinence pants on a beach in Clacton I am not sure it would cut the mustard on a beach in Rio.

This really made me laugh Ivan 🤣🤣 I was just imaging Rob on any beach with his Tena pants on 🤦🏻‍♀️🤣🤣

Elaine.

I do agree with with OhDear about Keeping the water intake up. I was told less water can make the urine more concentrated and irritate the bladder.

I joined a zoom meeting last night  organized by Andy62. Victoria the physiotherapist, made a point that lying down to do PFEs was not the best position, all to do with gravity.

My work involved stopping in hotels a couple of nights a week. I was paranoid about wetting the bed. I put a pad in my snug pants, wore a pair of tena pants over the top had one of the hospital type water proof squares on the bed and also slept on a towel. As it turned out I never leaked.

I assume you can still book trains seats to be near a toilet. Don't forget some nappy sacks for the wet pads.

Hope the next trip is successful.

Thanks Chris