Progressive neurological decline - what does this mean in real terms

[NorthernDancer]

This is what the last GP he saw put in DH's notes.

Since April, DH has been losing flexibility, mobility and strength at an alarming rate.

He has not been given a diagnosis at all, but this phrase is in his notes and I wonder what the GP thinks is really happening to him.

How old is he? Has he been referred to neurology?

I seem to remember that you wrote about DH in June, OP, regarding a cancer diagnosis. Maybe you can clarify what's been happening.

https://www.mumsnet.com/talk/cancer/5354676-doctor-speak?reply=145198238

He's 72 and has not been referred to neurology

He has had lots of tests, but still does not have a cancer diagnosis, although we are pretty sure from conflicting information received from the hospital that he does have prostate cancer and will be diagnosed at some point in the next couple of months. It's a long process, but he has no symptoms of prostate cancer and never has.

He has been assured by one of the specialist oncology nurses that these symptoms are nothing to do with prostate cancer, although the GPs will not accept this. It's a very difficult situation, which I am trying to resolve through PALS.

Please please please get him back to the GP and into neurology urgently.

I dont want to scare you unnecessarily but I have very personal experience (MIL) of these symptoms, and it turned out to be a (benign) brain tumour.

That's the sort of thing I am concerned about and I am taking steps to try to make that happen.

All I really wanted from this thread was yo understand what the last GP might have meant by "progressive neurological decline".

Progressive neurological decline means a loss of function that is continuing to worsen over time, that they believe is neurological in origin. It's a description, not a diagnosis.

Do you know why your DH hasn't been referred to neurology?

If I went to my GP and told them I was losing flexibility, mobility and strength....I'd expect them to describe this as Progressive neurological decline.

Basically it's medical speak for what you've told them

Just trying to get some context to try and interpret what your GP might be thinking....

What makes you think he has prostate cancer? Has he had a biopsy?

You mention a specialist oncology nurse ..what diagnosis are they connected with?

They don't think his weakening is linked with prostate cancer...is this because they don't think it's symptomatic of that which makes them think its not prostate cancer

He's had an MRI, a full body scan and a biopsy. We have two pieces of paper from the hospital which both say he has prostate cancer, although at different stages and he has been told verbally as well that he has it. He was told initially in writing that he had a bone met, then he was told verbally that he does not, but that he has lymph node involvement. It's all very confusing, but I think he does have prostate cancer and we are just waiting for a formal and definitive diagnosis. He has no symptoms at all.

The GPs will not touch the neurological issues because he has a diagnosis of prostate cancer pending. The oncology nurse who was present at his biopsy said they were nothing to do with his prostate cancer, but the GPs will not accept this because they say she could not know.

I understand now that 'progressive neurological decline' is merely a description and not a diagnosis in itself. I don't think, from my reading, that anything that might cause that would be good news.

A quick Google suggests that neurological complications are associated with prostate cancer, so I would push for some answers.

That all sounds difficult from the way it's been presented to you. You mention 'paper' which say he has prostate cancer (but two different stages) but then talk about a pending diagnosis. I'd say it's not pending if they have written to you to confirm the biopsy shows it. There can be no ambiguity about that.

There can be ambiguity about bone mets and lymph node involvement so much as an initial scan might not rule it out...might even say "could be" bone mets but on further assessment or PET scan it's not that. That would also change the staging.

I wonder if your GP is as confused by the communication?

A prostate cancer diagnosis has now been confirmed tonight post biopsy. It is still not clear however what stage it is at, but that does end 5 weeks of confusion.

Urology are still saying that the neurological symptoms are nothing to do with the cancer. We'see a private neurologist tomorrow and hope to make some progress with that then. In the meantime there has been further deterioration.

Y9u poor thing. The mismanagement is mak8ng a dreadful situation worse.

I'm assuming (possibly incorrectly) that neuro symptoms would be a consequence of vertebral collapse. I guess if the vertebra are not collapsing this would remove a link between cancer and neuro

Good luck with the appointment tomorrow. You might find it helpful to write down all your questions so you don’t forget to ask anything.

It all sounds very difficult. How are you coping?

Metastatic cancer has systemic symptoms ie symptoms that affect your whole body non specifically like weakness. When my mum was diagnosed with metastatic breast cancer her main symptom was crushing fatigue and weakness which was initially misdiagnosed as depression. These did get better when he cancer was treated. Cancer cells are very metabolically active and some of them can even secrete substances that affect other systems (paraneoplastic syndrome). To my mind it is most likely that it is all connected to prostate cancer. 6 month wait for neurology around these parts anyway.

I would trust the GP more than a specialist oncology nurse about a diagnostic matter. I really don’t think she would be likely to be qualified to say definitely that symptoms are not due to prostate cancer. I hope the neurologist is helpful to you.

The neurologist was extremely helpful. He actually carried out a full examination. DH, for some reason, has widespread nerve damage and needs an urgent MRI. He says it is very unlikely to have anything to do with the cancer.

Do you know what his PSA or gleason score is? I assume he must've had a PSA test at least. Is he seeing an actual oncologist?

💐

Thinking of you op, what a difficult time for you both.

@Firefly1987 OSA was 7.5, so just over range. Gleason core is 4 + 3 so moderately aggressive. He has not seen an actual oncologist. That is still some way off.

@coxesorangepippin it is indeed extremely difficult watching my DH decline, certainly week by week, if not faster and not able to do anything about it.

@NorthernDancer ah ok yes PSA is a little high but maybe because of his age not too worrying. I really hope he can see an oncologist soon. I do think his symptoms are unlikely to be from the prostate cancer. My dad had neurological symptoms with prostate cancer and they happened very late in the disease, after many months of other symptoms (mainly bone pain) and years after first diagnosis. It's quite a rare complication to have, my dad was unlucky. So I'd be very surprised if your DH's symptoms are from the prostate. I hope you get some answers soon about what's going on. It must be so worrying for you.