Rapid symptom progression

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Afternoon all,

I hope you are all as well as can be for folks who find themselves here, whether patient or loved ones

So in a mere matter of days, Dad has suddenly begun to experience severe issues with weeing, full bladder but difficult to start weeing and then weak flow very, very stop start. Repeat this process half hourly. He never complains of pain and now he is complaining of pain in his lower back. So off we go to GP who says forget about the Urologists "magic" PSA number of 20 to be seen again, this is urgent and requires urgent referral. Also noted another 5kg lost. No infection present in urine.

Although we have seen a rise in the PSA from an inital 8.6 to 17 in around 9 months, I suppose I wasnt expecting this sudden onset and severity of symptoms, to date the weight loss and lethargy have been the only real symptoms but these can also be attributed to dementia.

So I begun to try to put together a list of questions for the consultant which mostly consist of, what do you think is causing this(I realise the answer probably isnt very good) what do we do now? What support could we get as we navigate whatever is to come? He honestly looks so frail now, I park as close as I can to wherever we go but this visit to the GP, the few supported steps he had to walk completely wiped him out and I had to put him to bed afterwards.

Do you think they will attempt any scans? They have refused him CT previously due to dementia, now with the urinary issues, keeping still for an extended time is not feasible. Ive said before I dont think they would offer even hormone treatment due to a myriad of health conditions and even if they did, would it be in his best interest to perhaps futher diminish the tiny bit of quality of life he currently has?

Tough times, tough questions but as always all advice/feedback from this brilliant hive mind is very gratefully received. Its hard to see clearly when you're in the thick of it, isnt it?

Millibob 27 days ago

Hello Dads carer

I am so sorry to read of dad's recent decline.

Personally I would forget the Prostate Cancer and concentrate on his quality of life. There are obviously other things going on which are far more important. if they can get away without any scans then yes, that's great but one may be needed.

* An easy solution to the urine problem is a catheter - would he be OK with this?

* Can your team sort out what is causing the weight loss (and lack of energy).

* Can his GP refer him for a "care package" where he gets visits from carers and the district nurse?

Remember our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) is there for you and Dad.

Don't forget we aren't medically trained so this is only from personal knowledge.

Do let us know how you get on.

Best wishes - Brian.

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Dads carer 27 days ago in reply to Millibob

Thanks Brian, hope you are doing ok ️

I think he would be resistant to a catheter even given how dire the current situation is, if the Dr pushed the issue though he may yield. And of course we would then need some additional care with the emptying etc(I've been his only carer full time now for 5 yrs, hard with two small children but hopefully this may finally make him see we need more than I can give)

I agree about doing whatever can be done to retain quality of life, I'm just questioning myself now its here. Human nature?

Will ask the consultant about the lethargy and weight loss, all good pointers Brian

Many thanks to you

mstev2 26 days ago in reply to Dads carer

If you haven't already, it will be worth applying to your local Social Services department for a "Care Needs Assessment".

They will decide what your father needs, and then if it can be supplied. A financial assessment will follow to decide how much they wish to pay for.

Quite often, the original assessment is carried out by an occupational therapist. Even if you don't get financial help, you will get an expert (fairly expert) appraisal of what might help.

To guide your expectations though, my daughter had to have one of these last year, and it took 3 months, and she was on the "emergency" list.

It is still worth doing, though.

Steve

Changed, but not diminished.

Dads carer 26 days ago in reply to mstev2

Many thanks for the reply Steve,

He has recently had a care assessment following a fall and hospital stay and was graced with some equipment to make getting about easier, grab rails, commode, raised toilet seat etc so we are covered there and a temporary care package(which he couldnt wait to get rid of!) He would be a self funder and having had poor dealings with the care companies used by SS(the reason I became full time care) I think I would elect to use one of our own choosing or even in our area, there is a scheme run by the council called Community Catalysts which supports micro care businesses and fortunately there are some excellent ones there.

It's just getting him to see reason but I think the trip to the consultant will perhaps help him realise the gravity of the situation and that backup will be required.

Wishing you all the best

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