Spinal Cord Compression

Unfortunately I have no positive stories but I'm following this as I've just had scans on my back and hips for pain that suddenly started a few months ago.
I'm hoping my spine is OK as I don't get to see the consultant for another week. I am working on the assumption that if it was bad they would have moved the appointment forward but you never can tell

Thank you for your reply. I hope that it's not something bad and that your spine is okay! 

Hi katherinelion.

Good evening I am very sorry to hear that your father has had a serious fall.

Yes I have got mets in my right hip and in the whole of my pelvis. I have just had some radiotherapy to that area as I started to get chronic bone pain.

I only had a shot of Radiotherapy (Strong) and since that has happened my chronic bone pain has now subsided thank goodness.

I have got my next appointment tomorrow with my consultant to assess the reaction to the radiation so fingers crossed  

Prostate Worrier.

Hello katherinelion and welcome to the prostate cancer family. I have tried to search the forum for men with MSCC and can't find any recent references. In the meantime I have attached an information sheet on it which indicates that your dad has been given very quick treatment in accordance with the guidelines. Please let us know how your dad gets on as it helps others who might also develop it. I presume your dad has been on medication for possible bone thinning caused by the hormone therapy along with Calcium and vitamin D.

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/malignant-spinal-cord-compression

If you want more information then it will help us to help you if you would like to provide some information on dad's diagnosis and treatment so far. My husband was diagnosed T4 with distant soft tissue mets in July 2020 and has undergone a range of treatments but is still going strong. Mobility for your dad is going to depend on how well he reacts to treatment and whether any damage was done when he fell. As for life expectancy then that is one for your dad's medical team but with current treatments many men are exceeding their initial prognosis - my husband was told he possibly had 6 months in 2020.

Yes, he has the same mets in both hips and pelvis! 

I am glad that you've found that the radiotherapy helped! I hope that my dad finds the same, he's going for radiotherapy tomorrow!

Thank you for the information sheet! 

He hasn't been on any bone strengthener yet, he started his first chemo three weeks ago and is due to start bone strengthener this week (hopefully!) 

My dad is also T4, he was diagnosed around two years ago with some metastasised cancer in his hips, pelvis and lungs (but not huge mets), he was told around 5-10 years at the time but like you said, he was told many exceed this. He had hormone therapy which unfortunately stopped working which has led to chemo now. 

Hi katherinelion.

Yes he seems like he is the same as me. My recent x-ray showed a ring of cancer around my pelvis with a hot spot on the right side.

This is the side that they targeted recently with the radiation which calmed down the bone pain. We go to the hospital tomorrow to find out the results.

I do hope that everything goes well tomorrow with your father's radiotherapy and please come back to me if there's anything else that I can help/support you with???

Prostate Worrier.

Hi Katherine

I can't add any positive story yet but wanted to say that my dad (69) was diagnosed with Advance Prostate Cancer and MSCC in August and we are still vey much in the figuring out what the heck is going on stage.

He had had back pain and other things for years but, as all the men in his family have done, he ignored it all or put it down to overdoing the garden etc. However when he went for a routine blood test earlier this year, it showed an incredibly high PSA (over 2000!!!!) and he was sent for an examination which concluded very enlarged prostate. Urgent MRI arranged but we ended up in A&E the day before the scan due to his back pain being so bad it had him in tears and he lost the feeling in his right leg. They did MRI, CT, bloods, all sorts, and unfortunately, at 4.30am, they told us he had prostate cancer that had spread and he had MSCC. 

He was admitted to a ward for treatment of blood clots on his lung and also immobilisation of his spine - lying flat all day every day! He was diagnosed on the Monday and on the Wednesday was sent for radiotherapy treatment to his spine. He came home on the Friday with steroid tablets and with a spinal brace fitted. 

His spine and movement have been fine since he has been home, no pain whatsoever - just trying to get him into the habit of daily walks etc. that has been the struggle!! He hates the brace and doesn't understand why he has to still wear it but he does. 

He is on degarelix injections monthly and had a biopsy last week to get the genetic info to see if he is viable for any treatment trials etc. He is catheterised at the moment due to getting a UTI and they will review that when we finally see the oncologist in November. 

We haven't had any meetings with Oncology yet, that is in November, so I am hoping then we will know more about all the different numbers and scores that people seem to have on these forums and be able to plan a little for the future. 

As I said at the start, I don't have a positive story yet, but I am hoping that after November, I might be able to share some good news with you.