My husbands recent diagnosis of advanced prostate cancer

Elaine

I have a permanent catheter and frequently get the feeling I want to urinate. The position of the catheter will affect the feeling of wanting to urinate. If the catheter is high up in the bladder urine will build up below the oulet in the catheter. A small build up of debris in the catheter can also halt the flow for a while. Pressure in the bladder will  usually push the debris out. As long as the bag is filling there should be nothing to worry about. I find lying down will sometimes help restart the flow. 

I was told Rosé colour urine was okay  Red wine colour needs attention. As already said a bit of bypassing frequently happens, if you get bright red clots coming passed the catheter get help. 

I am sure it has probably been mentioned but a small squirt of instilagel or hydrocaine down the eye of the penis at the side of the catheter will usually ease any discomfort. It costs £2-3 and can be issued by a pharmacist without prescription, someone did say Boots won't issue it without a prescription.

As always if in doubt get medical attention.

Tell him to take it easy but keep mobile.

Thanks Chris

Thanks for the reply Chris. His bag is definitely filling up so I guess that’s a good sign. He drank quite alot yesterday so he was constantly emptying it, still very rose though….hoping it will become a bit clearer today. Surgeon phoned again yesterday though and said that was fine too.

I did get some of the instilagel to bring with us. I got it from boots without prescription but they were very reluctant to give it to me. He said it feels fine at the moment so doesn’t need any…not sure if best to use it preemptively?

Hope you have a lovely Christmas x

Morning Elaine

Responding to a point you asked of Chris, my understanding is that the Instilagel should only be used as and when needed. It immediately numbs the area where it is placed and according to the instructions that come with it it should not be overdosed. I have only used it a couple of times and have used much less than the recommended dose.

If your OH does manage to evacuate his bowels today ( I did and it was wonderful) tell him not to be concerned if the stools are a little bloody. I was told by one of the nurses at my hospital that that would happen and not to be concerned.

Have a great day

Ivan

Not sure if anyone will be on the forum today, just after more catheter advice please. Rob's night bag was nearly full this morning, since then though he’s not had to empty it and it’s not even half full. He drank about 3 litres of water yesterday and over 1 litre so far today. What little urine there is is still very pink and has been from day 1. I’ve got him to lie down to see if that might restart the flow. Is there anything else he could try? Should I be worried? Or just being paranoid? Thank you

Thank you Ivan.

He’s been squeezing the tube slightly and that seems to have released some debris, he’s now emptied the bag 3 times in the hour. There were lots of little clots that’s came through it. Rob's urine seems to have been pretty pink for the start although he said he never saw it while in hospital! He hasn’t had any leakage from his penis so not using any pads at present.

It’s all just so worrying isn’t it….things have been pretty good so far but I know im inclined to panic. Doctor did say though if nothing is coming through it at all he must come in and not wait too long.

It was never mentioned about flushing the night bag with warm water. 

Elaine 

As a seasoned catheter wearer I have lots of things I do that I would not necessarily tell post RP surgery patients. I do the squeezing the catheter trick, I start where the catheter comes out of the body and work down to the bag. My catheters are made of clear material so it is easy to see if things are building up. I am guessing you perhaps have a tan coloured catheter. Of course you can't see what is happening inside the urethra. 

Ivan 

I asked about night bags on the facebook  site, out of 15 people 8 were given enough night bags to have a new one each night, 7 had to reuse a night bag for a maximum of 7days.  Some of the 8 had non reusable bags. There seems to be no consistently in NHS protocols.

Thanks Chris

Good that everything is back to "normal" Elaine and that you are multi-tasking. What women are good at!

Hopefully though you were not holding Rob's urine bag when holding the jug to make the gravy. Easy to get them mixed up and pour the wrong contents on the turkey.

As well as drinking copious amounts of water I was told to keep moving about and to walk around  as much as I can. I think over the last few days I have walked around my property more in those days than I had in the previous couple of years.

Have a good day

Ivan

Edited by member 26 Dec 2021 at 13:22  | Reason: Not specified

Other news….histology is in!

Still trying to get my head around all the terminology but from what I can gather and from surgeons response things look pretty good considering where we started.

50% nerves spared. Negative margins. And it was contained within the capsule so no seminal vesicle invasion or EPE etc. but PNI was noted.

1 out of 14 lymph nodes removed had some cancer cells in (which we already knew about) with no extra nodal extension….it was 7mm though so slightly smaller than first thought. Now it says no lymphovascular invasion identified, can anyone help with this? Just with it being N1 I thought there might be invasion.

New grading of T2 N1 (no letter after T2 (a,b,c) is there always? Gleason score upgraded to 4+5=9 not great I guess but someone posted recently about how HT could mislead and increase Gleason score so going to ask about this.

We have a meeting next week to discuss so will get all my questions ready for then.

Still working my way through trying to understand it all but any thoughts would be welcomed.

Thank you

Thanks Lyn. At the hospital they told him to walk as much as possible but don’t overdo it, also how it was a good time of year to explore London while it was quiet. It was just one day really that we walked a little too far, we did just meander with the dog but lesson learnt and certainly don’t want to risk a future hernia. 

Did you see my other post about the histology Lyn? Just wondered if you had any views on it? Your knowledge about any of this would be greatly appreciated. Thank you x

He would probably try Lyn if I let him 🤦🏻‍♀️😂

Thanks for your response on the histology. Atleast we’ll get to ask some questions soon. It was the No lymphovascular invasion that got me puzzled. I guess again I’m clutching at straws that when they took the lymph node then that’s it all gone! I think I’ve mentioned this before somewhere but my gran had breast cancer at 80, had mastectomy and they removed 3 lymph nodes (turned out 2 had cancer) she never had any other treatment and is now 95 and still doing fine. We will live in hope I guess. I’ll update next week when we’ve seen the consultant. 
Happy new year, and all the very best x

Thanks Gaz, yes things are better…catheter flowing well and not pink 🙏🏼 Only one more full day with the catheter all being well with TWOC and then post op consultation Wednesday. Busy week for us since we’ve been doing nothing for 2 weeks 😂

Hope all good with you 👍🏽

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