Spinal Cord Compression - Please Read

Hi

I am posting this seperately from my "trials" threads as it is extremely important.  I was going to say I don't want to scare you.... but I really do!

Quick recap. Was offered a new trial, and had an extensive medical, followed up by base scans performed the following week. Unfortunately one of my blood levels was too high so outside parameters of trial so didnt go ahead. However, last friday I was told that the CT scan showed that I was showing signs of spinal cord compression. The pictures showed one point where the spinal column had a tumour starting to break into the canal.

Going back to my extensive medical, which included all relexes tested and I passed everything with flying colours. Fast forward to Tuesday this week just before getting an MRI scan, reflex were tested again. The doctor COULD NOT get any involuntary reflex action from any of my knees. Nothing, despite persistingly thumping me with his hammer. This is only 11 days after having no problem whatsoever. Guys, this is only 264 hours!

Straight after the MRI scan an emergency medical incident on me was called as it showed one of the tumours was now pressing directly on my spinal cord. That has happened in the week since my CT scan last Tuesday.

The plan was to give me all my radiotherapy in one go, but was decided today to treat me over 4 working days as the effects would be overwhelming, extreme tiredness, vomiting, diarrhea and bone pain flare up.

Enough about me, I think I have been extremely fortunate. I honestly thought my aches and pains were just because not getting any treatment at the moment, maybe I was getting slightly worse.

Talking with the oncologists, it was stressed to me that everyone who has had chemo was given an emergency number direct to the specialist ward. If anything, and I mean ANYTHING has changed, any ache or pain, numbness, pins and needles, give the number a ring. A specialist will talk things through and more than likely get you in to check you over and maybe a CT scan. Yes, you will have to write the whole day off but believe me, it will be worthwhile. This is no time for the British stiff upper lip.

Even if your regular Onco appointment is next week and you think you will just mention it then, dont! They will never dismiss your concerns. I was told that by my consultant yesterday that he has seen 2 men who's only symptom was numbness wiping their bottons after going to the toilet. Nothing else, just that. So noticed about 20 seconds once a day. No change in your body is too small.

If only one person reading this is inspired (or frightened) into getting any change investigated earlier, I will be so happy. My team was on the ball, and even then, I think I was only days away being paralysed. God knows what would happen after that.

Don't delay-Ever!

Best regards

Had my follow up appointment with the head of radiotherapy/oncology department., following the 4 x 45 minute intensive radiotherapy sessions.

Told that SCC is rather similar to having a stroke with neurological damage to spine rather than the brain. They have taken decisive action against the tumours, but what they do not know is what, if any, nerve damage has been caused, and if it indeed will get any better.

I am constantly aware that I seem to have "nothing in the legs" at the moment and get upset with myself that I am not recovering faster that I would like, but told it could take many months before any sort of normality can be established.

I still walk every single day, and know to the minute how long certain walks from my house takes. As an example, a walk which with regular monotony used to take 38 minutes now takes 55-60 minutes.

This is after SCC was diagnosed and acted upon immediately. I shudder to think if there had been any delay. I feel like the luckyist man alive.

I can be considered for more trials 28 days after radiotherapy so just another 2 weeks to go.

Best regards

Hi David, I hope that you are recovering well and everything is going to plan re: treatments and physio.  I totally agree that any man with the symptoms you described should get help straight away.  Get a relative or friend to take you to A & E for an emergency MRI.  My advice would be do not waste valuable time dialling the emergency services.  The time spent waiting for them to arrive is currently diabolical, the questions they ask upon arrival are all about box ticking before they even decide whether to take you to hospital.  My relative has advanced prostate cancer and knows he is on borrowed time.  We suspected a SCC and said this to emergency services. He had developed bowel incontinence and was struggling to walk. The emergency services watched him walk down 2 flights of stairs and to the ambulance whilst in very obvious pain and no assistance whatsoever was offered.  He spent over 24hrs on a trolley in A & E before they could find him a bed on a ward.  So hence, it was even longer before he had his MRI scan.  A further 24hrs at least before he was offered radiotherapy, an operation was out of the question.  He is now struggling to walk and devastated that he may not be able to walk again.  When I think of all of the treatments he has endured since his diagnosis nearly 5 yrs ago and how well he has coped, it makes me so angry that all of the advertising campaigns harp on about mens health and how they should get checked etc etc.  He visited his GP numerous times and was fobbed off and told he was stressed.  Well, no where near as stressed as he has been the last 5 yrs as by the time they checked his psa he already had incurable cancer.    All of the guidelines relating to SCC also state that it is an emergency and should be treated as such but they have yet again failed on all counts.  The only things I can say that are favourable about his treatment are that he has a brilliant oncologist and the nurses on the wards he has been on have been excellent.  Never have I been more aware of how upsetting, stressful and debilitating a prostate cancer diagnosis can become.  Money spent on treatments after diagnosis would be better spent on ensuring all men get checked and listened to when symptoms develop instead of advertising and leaflets.

I know this isn't a very recent thread but I just came across it. I'm my husband's carer and don't have much time to look for posts etc and to write - except sometimes in the small hours of the morning. 

I want to add that Macmillan have a comprehensive MSCC alert kit - leaflet and alert card that can be viewed online and printed off - and/or are also free to order from Macmillan.

https://orders.macmillan.org.uk/products/mac15457_kit_e04-mscc-alert-kit

The card includes brief (but important) info for doctors & health practitioners.
We also have a MSCC card given to us by the NHS when my husband was diagnosed with advanced PC.

I do also have to add, however, that despite following the protocol on the cards ourselves - got him admitted urgently to A&E - the medical profession STILL didn't follow their own NHS protocol! They wasted time with a CT scan. Put him on pain killers and laxatives and said he didn't have any symptoms of MSCC! The extreme pain and constipation had been relieved somewhat by opiates and laxatives and the CT scan didn't show any obvious compression! (Unsurprisingly - being a CT scan...).
They waited till the next day to do an MRI and had already arranged to transfer him to another ward in the same hospital and assumed no further treatment would be needed.
However, of course the MRI showed unequivocal compression at T10 (where it was already known - back in March 2024 - there was much cancer).
Fortunately he was then transferred, as an emergency, to a hospital that could do the 5 days radiotherapy course.
Even more fortunately, he was treated before developing any paralysis - though he is still in much discomfort and spending most of his time in bed. (Before the compression, he was quite active and happy).
The radiotherapy only finished 10 days ago, so there may well be further improvement. Though his cancer is stage 4 and incurable, so we don't expect any miracles.

Also to mention:
We know the steroids are essential with MSCC.
However, the steroids are having a mega effect on his sleep. Even with the current reducing dosages as he's weaned back off them.
He's simply not sleeping - more than a couple of hours a night! (and awake all day).
It's now 6am and he's still awake upstairs. Been awake all night, as far as I know.
This is all despite taking 2 sleeping tablets a night since Tuesday - as prescribed by local GP we went to see.

We have an appointment with his oncologist on 6th Jan, so will see what his take is on it.
Don't yet know what to think of him as we've only seen him a very small handful of times since hubby was diagnosed in Feb 2024. 
He's mainly been having 6-monthly phone appointments with specialist urology nurses.
Incidentally, his PSA reached a nadir in June 2024 but that hasn't seemed to have raised alarm bells.
That said, they perhaps feel there wouldn't be much they can do - as apalutamide reacted really badly with him (one pill in May 2024) and he understandably doesn't want to go back on it.

He's been on 3-monthly prostap injections since diagnosis. (Till the last injection, they were being administered intramuscular - in error. That was picked up on with last phone consultation with specialist nurse back in August. So last injection (November) was administered subcutaneously, as directed by oncology/urology departments).

Not really asking for advice here - as much as anything wanted to raise two facts in one go, that may be important and helpful to others.
1)  The free Macmillan MSCC kit. (see link at start of this monologue).
2)   If on 3 monthly prostap injections - make sure it's administered subcutanously not intramuscular. If you have access to your medical records, this will be recorded each time the injection is administered - probably using abbreviations. (We just didn't know to check!).

Edited by member 29 Dec 2025 at 06:46  | Reason: Factually incorrect regarding the prostap injections.