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Paul Edwards

Metastatic spinal cord compression - What no-one told me

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Paul Edwards    31
Paul Edwards
No-one told me about metastatic spinal cord compression.  I want to warn men with advanced prostate cancer about the risk of metastatic spinal cord compression so that you don't end up like me.
 
What is metastatic spinal cord compression?
This happens when cancer cells grow in or near to your spine and press on your spinal cord.
 
It's not common, but it is important that you’re aware of the risk, what symptoms to look
out for and how to get help.
 
What is my risk of developing metastatic spinal cord compression?
You need to be aware of it if you have prostate cancer that has spread to your bones or has a high chance of spreading to your bones.
 
Your risk of metastatic spinal cord compression is highest if your prostate cancer has already spread to your spine.
 
What are the symptoms of metastatic spinal cord compression?
 
Prostate Cancer UK has published an excellent fact sheet on metastatic spinal cord compression.  The symptoms of metastatic spinal cord compression are listed in this fact sheet.  Click here to read the Prostate Cancer UK fact sheet on metastatic spinal cord compression.
 
What should I do if I get symptoms of metastatic spinal cord compression?
If you get any of the symptoms listed in the fact sheet, you should get medical advice straight
away.  Don’t wait to see if your symptoms get better and don’t worry if it’s an inconvenient
time, such as the evening or weekend.  The sooner you have treatment, the lower the risk of long-term problems.
 
Take the Prostate Cancer UK fact sheet with you to the doctor or hospital as many doctors are not aware of metastatic spinal cord compression.
 
My story
 
I had metastatic prostate cancer which had spread to my spine.  I was living at home.  I was able to walk and drive a car.
 
On 16 December 2017 I contacted my medical oncologist with symptoms of metastatic spinal cord compression. He admitted me to hospital immediately.  It was too late in the day to get an MRI done at that hospital so I was transferred to another hospital for an emergency MRI during the evening.  I saw the neurosurgeon at 9am the next morning and he operated on me at 1pm that afternoon.
 
Despite the operation, my knee and ankle muscles have been damaged.
 
As a result I have limited mobility.  I only stand for short periods and can only walk short distances with a walking frame. I need assistance in getting dressed. I need someone to wipe my backside when I have a shit.  I use an electric wheelchair and get transported in Maxi Taxis (disability taxis).
 
To get the nursing care that I need, I am now living in a nursing home where most of the other residents are elderly and demented.
 
What a change in my quality of life in a very short period!!
 
In hindsight, had I been aware of the symptoms and risk of metastatic spinal cord compression, I would have sought medical advice much earlier and received early treatment which most likely would have avoided the problems that I am now suffering.
 
The purpose of my post is not seeking sympathy or complaining.  It is what it is.  The purpose of my post is to make other men with metastatic prostate cancer aware of the risk.
 
 
 
 
 

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Sisira    0
Sisira

Hello Paul, 

I am Sisira your friend from Sri Lanka. I was in Melbourne on a holiday during December last year and when I wanted to meet you I was sad to learn that you were in hospital to take treatment for this serious condition Spinal Cord Compression. Thank you very much for this very informative post and especially for the access you have provided us for the Fact Sheet published by the Prostate Cancer UK. And also for sharing with us your own experience.

I hope if I am correct you are in eighties and I am somewhat surprised to when you say no one has told you about such a serious condition that can be caused by PCa until you were caught unawares right now! I was diagnosed for PCa only in March 2015 and soon enough I learned that bones are the most vulnerable in Meatastasis and Spinal Cord Compression could be the most disasterous event if the danger is not detected early and treated properly. Early reading of Dr.Patrick Walsh's priceless book "Guide to Surviving Prostate Cancer" has equipped me with a wast knowledge on PCa and raised my confidence level immensely that I am so fearless in managing my disease. 

Whilst thanking you for your post to educate and help others I also wish to add my humble advice to my colleagues here to get a copy of the above book as soon as possible ( Can order from Amason.com ) and read it for your own sake and well being. 

I wish you good health and longevity. 

 

Sisira

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ardee    2
ardee

Hello Paul .... thanks for bringing our attention to spinal cord compression and to the PCUK handout. I will be meeting with the PCUK CEO on June 6 while in Blighty .... if you wish to provide feedback, let me know via e-mail.

 

Perhaps you can add a few words to your post on treatment options, and also on yoru opinion on the value of surgery if diagnosed with spinal cord compression.

 

O&U, rd

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Paul Edwards    31
Paul Edwards

Ardee - As the Prostate Cancer UK Fact Sheet sets out details of treatment options , I didn't include these in the post.

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Bruce Kynaston    1
Bruce Kynaston

Paul,

I was unaware of your problem so now I can feel for you.

It is many years since I was treating men with PCa and had a very different attitude to that expressed in the English information sheet to which you referred.

Any mention of a man with back pain and known treatment for PCa received urgent attention from me. An example relates to my monthly attending a woodcarving group and one asked me about a pain he had that ran around his lower ribs on his right. I asked whether he had any discomfort in a similar position on his left side, to which he expressed surprise as to why I asked, but he did. I gently tapped over each vertebra down the back of his chest and over one (about his 7th. thoracic vertebra) he reported discomfort, so my diagnosis was of a metastasis in that vertebra. I drove him home and another took his car. To bed for him, and to call me if other symptoms appeared. I would phone his radiation oncologist and he should have an ambulance take him first thing on Monday. He was X-rayed and then treated appropriately.

If I was asked to see a man with a similar problem, but more threatening, that became an emergency, and if out of work hours, it could well mean the prednisone, as mentioned in the English paper, and beam radiotherapy after X-ray studies to define the site, Spinal cord compression has to be prevented if at all possible.

 

A man treated for PCa and who develops a back pain ought have an X-ray study of the appropriate area, and I did not need a CAT scan (I was working in this before CT scans were developed).

 

Best wishes, Paul, and for any who read this.

 

Bruce.

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Paul Edwards    31
Paul Edwards

Bruce - I wish more doctors had the awareness of the problem that you had.  As always, your contributions to the forum are greatly valued.

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Bruce Kynaston    1
Bruce Kynaston

Paul,

Thank you for your kind remarks.

 

One day, a chap arrived from Cairns (my old home town) with severe damage to a vertebral body and adjoining parts of it, so I admitted him and ordered a ROTO-bed (which places a patient in a situation where a unit, with a 'doughnut' piece for the face can be clamped into position) and so the patient can be turned over each 4 hours, or be transported as for radiotherapy.

Naturally, he was 'not impressed' and I went to see him and explained why I had subjected him to that 'imprisonment'.

I asked him to imagine he lived in a cottage that stood on 4 wooded posts (those post were common supports for houses in Cairns) and that 3 of them were badly affected by white ants. Would he be very wary and careful? Yes, he would, so I said I would show him his X-ray and point out his vertebra was like that. He then understood but though not over joyed, and thanked me.

 

Bruce.

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ardee    2
ardee

Thanks for your very effective illustrations, Dr. Kynaston ...... but I am not clear where you feel the PCUK differs from your approach. It recommends immediate attention if you experience pain, as well as bed rest, and radiation amongst other more recent treatments.

One protocol we have not discussed that is available in Oz I believe, is Radium-223 (Xofigo). It is very effective as a palliative drug for bone mets. It can also be considered as a management protocol, although it is only available once in a lifetime. Some men have been known to split the 6 sessions - others have been advised this makes the drug way less effective - I suspect that may be because it has not been trialed int hat context.

The huge caveat is to be sure blood counts are strong before considering Xofigo since it can seriously impact the bone marrow; the radioactive isotopes are drawn to calcium. I have known several men where Xofigo has spelt the beginning of the end because it adversely impacted the platelet, haemoglobin and white blood cell counts so seriously.

The Lutetium 177 treatment Paul is currently trialing is a much improved variation of radioactive isotope therapy. It is attracted to PSMA so far more focused on prostate cells.

 

Onward & upwards, rd

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Paul Edwards    31
Paul Edwards

ardee - Although Xofigo (radium 223) has been approved for use in Australia, it is not publicly subsidised.  This means that its cost is beyond the reach of most Australian men. As a result it is rarely used in a clinical setting.

 

We have been lobbying for several years trying to get public funding for Xofigo in Australia 

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