Hello everyone, I'm new here so please excuse me if this is a stupid question. I have stage 4 PC that resulted in metastatic spinal cord compression (MSCC). Google searches are just confusing me. I want to find out how many men with PC have MSCC? Thank you
Thank you all for your responses. I will try and get more information in my bio when I feel a little bit better. It's a bad week right now but I'm sure you all know about good days and bad days.
P. S. Please see my second reply below on the topics of ADT, spinal cord compression, and a statistic on frequency from ChatGPT.
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FM, please share more information with us, in your bio is best, if you can.
If you're taking Abiraterone here, most likely you are also taking prednisone, yes? But what about ADT? What kind of ADT are you taking - in other words the trade or generic drug name? And when did you start your ADT? And how long ago was your prostate cancer diagnosed, and metastasis? And what were your original symptoms? And may I ask as well please what kind of a doctor do you have? A urologist or a medical oncologist for example? Better answers may be possible with this information.
And certainly your question FM is not stupid; and we hope that you have some local engagement with healthcare that would provide you with basic information. I have had a brush with spinal cord compression and compromised vertebrae. The risk doesn't go away. However results can vary and sometimes improvement is possible.
You can do a search on this site (upper left corner). Also, if you click on your post, you will see some related posts to the right. I know I've seen spinal cord compression mentioned quite a few times here. Good luck.
Hii FM,
Unfortunately, my father has been diagnosed with MSSC and has been paralyzed below the waist for the past four months. According to the doctors, there is no cure for his condition. Surgery would have been most effective if performed within the first 48 hours. At that time doctors told that since he is on radiation and tissues are burnt , so surgery would do more damage and wound will be very difficult to heal.
He was undergoing radiation therapy when this happened. Although none of the doctors I consulted believe it was caused by the radiation, it is known that radiation therapy to the pelvic area can, in rare cases, lead to paralysis. Specifically, a condition called radiation-induced lumbosacral plexopathy can damage the nerves in the pelvis and lower spine, potentially causing weakness, numbness, and even paralysis in the legs. This complication is serious and can significantly impact quality of life.
This is the most difficult phase of this disease.
Hi! To answer your question the problem is well recognised but I don’t know its frequency. The more important question is are you getting urgent treatment which if medical would usually be dexamethasone and focal radiotherapy . The dexamethasone is to reduce swelling which can get worse during radiotherapy. The alternative is surgical decompression.
I hope you are getting good care and wish you all the best.
TL;DR - for a person with metastatic prostate cancer already on ADT, there may be a 5% to 10% risk over time of spinal cord compression in circumstances of metastatic prostate cancer - see below.
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FM, in my first reply to you above, I asked about ADT for a reason. There are two kinds of ADT mainly, a GnRH agonist (like Lupron etc.) and GnRH antagonist (Firmagon /Degarelix), and a distinction is important where the spinal cord is concerned, at least at the beginning at diagnosis.
ADT is the foundation of any drug-based therapy for prostate cancer, metastatic or not, for at least half a century. And ADT works by turning off the cascade of hormonal signals, starting in the brain, that order up the manufacture of testosterone. As we all know, our prostate cancer depends on testosterone signaling to thrive and grow, at least for now. (GnRH-controlling ADT is the main pathway concerning testosterone manufacture. But testosterone can be ordered up in other ways too; that's the purpose for example, of adding Zytiga / Abiraterone to one's regime.)
At diagnosis of prostate cancer, with or without metastasis, the choice is made as to which of the two types of ADT will be used. In my case it was essential that the GnRH antagonist Firmagon ADT was chosen. As you will see, the choice of antagonist was the safe choice. Because, if on the other hand an agonist had been chosen, it could have resulted in further spinal cord risk or even permanent damage!
As as the use of the descriptor "antagonist" implies, an ADT GnRH antagonist therapy drug directly and immediately suppresses the production of testosterone signaling precursors.
In my case I had the beginnings of walking gait problems and very strong pain related to cancerous masses pressing on my spinal cord. The doctors were very anxious. Very, very quickly, due to the GnRH antagonist Firmagon, the pain began to abate. Because right away my testosterone production was suppressed. And by about 4 or 5 months later the pain was completely gone, has stayed gone, and my gait had returned to normal.
If, alternatively, my doctors had prescribed GnRH agonists such as Lupron (it seems that the vast majority of people are on something like Lupron), then the well-known phenomena of "testosterone flare" would have occurred. A GnRH ADT agonist works by overstimulating the brain's testosterone ordering mechanism. And it works because the overstimulated the "testosterone ordering mechanism" burns out! But before that happens, there will be a temporary "flare" or increase in circulating testosterone!
Testosterone flare probably doesn't matter at diagnosis unless you have cancerous masses pressing on vital organs, especially the spinal cord. If there is such a risk however, then the "testosterone flare" triggered by the GnRH agonist may cause the cancerous masses to become more active. Risking damage. Like paraplegia.
How often does this situation happen, where at diagnosis the spinal cord is at risk or even being compressed? Spinal cord risk at diagnosis shouldn't happen at all! Because usually there are other symptoms that alert a person to seek help, leading to diagnosis.
However in my case the only symptom I had prior to diagnosis of Stage 4B high volume metastatic prostate cancer was a backache, a normal ache, which started small and then grew to life-dominating pain at night. From a backache to diagnosis took 6 months. There are more people in this situation than there should be, because of the controversial prejudice against PSA testing. But it's almost entirely avoidable. PCa should be cut before metastasis and especially before high volume metastasis.
The case above describes what happens at diagnosis of metastatic prostate cancer. However the problem of threat to the spinal cord could develop after diagnosis. We assume at this point that ADT is already in place and stable. So which ADT type you are on probably doesn't matter so much anymore. (If we have metastases, we will probably always be on ADT.) And so the focus is instead on other therapies: radiation and surgery.
In terms of frequency, here is what ChatGPT has to say (Wed. Feb. 12th, 2025):
"For a patient with PCa metastases and already on ADT , the risk of spinal cord compression from metastases is not high but not negligible—roughly 5-10% over time, with higher risks in castration-resistant disease or those with multiple spinal lesions. Regular monitoring and early intervention can significantly reduce the chances of catastrophic outcomes."
"For patients with extensive bone metastases, the risk increases, particularly if there are multiple vertebral lesions."
I'm glad FM that you shared your question, because I didn't realize that apparently over time my risk increases due to my existing vertebral metastases, however dormant or quiescent they are now. (And by the way, the word "remission" is not generally used with metastatic prostate cancer.) For now I'm fortunate to have no issues. No deadlifts of course!
Great response.
Hi John, very informative response. I am wondering how MSCC manifests. I have been on a GnRH agonist for 4 years (ZOLADEX, was Bicalutamide before that). I notice I have trouble bending down to put socks on for example; need to pull the foot up if standing. Similarly can no longer touch toes without bending knees. No pain, just this movement restriction. Is this an example?
Ian - I have no idea as to whether the trend in your flexibility is a symptom of anything.
I see you had a CT scan most recently in August. And you also have your DEXA scans. I do know that according to at least one good quality paper I read that the whole world of biomechanical analysis for men with bone metastases from metastatic prostate cancer is a world that really doesn't exist. In my case I'm just told not "to twist".
In my own experience I can't touch my toes without bending my knees, but I'm not sure this is a symptom of anything except I should do more exercise and flexibility routines.
As for being on an ADT agonist or not, from my replies above it's kind of irrelevant in terms of progression, once you are in a stable situation.
As for manifesting, for some people unfortunately the situation is discovered because of fracture. Imaging helps figure things out before that happens. Specific symptoms though might especially include various kinds of pain. For example, because a nerve is pinched either by bone or a mass.
Thanks John. ChatGPT gives a good overview to the question. I have no pain but beginnings of 1-2 of the progressive symptoms. Something to keep an eye on.
Thank you for your thoughtful response. That is a lot of information for me to digest and it's going to take time. I just don't think as quickly or is promptly as I used to. I don't know if it's chemo fog or my meds but I've definitely lost a few IQ points since my diagnosis. I will try and update my bio as soon as I can but just writing this brief response is enough to make me need a nap LOL thank you so much
I had metastatic PC on my lower L3 about 3 - 4 months after radiotherapy to this spot I wasn't paying enough attention and tried to lift something a bit too heavy this a caused a break I then had to have a plate and screws put in to support my spine from L1 to L5 even though this has stabilised that area I still have problems standing/walking for long periods. Not much else can be done.
Good luck
Greetings FormerMurse,
Please update your bio. All info is voluntary, (e.g. age? location? treatment center? meds? treatments? dates and etc.)
note: Murse = Nurse?
Your info will help you and help us members. Thank you and regards.
Good Luck, Good Health and Good Humor.
j-o-h-n
I had spinal cord compression in lumbar. Excruciating pain. Started with bicalutimide and Lupron with abiraterone added later. Doing well now. God bless.
Like Chubby42 and ProfGary above, I had a compression fracture in my lumbar spine after about 6 months on ADT, AB+Pred. Very painful. I was fortunate to be able to avoid surgery, but my back is also weaker as a result.
Oh joy...
Answer to unknown question
Your thoughts?
Treatment for spinal cord tumor,non surgical 
