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Can MSCC return after surgery

User
Posted 06 Nov 2021 at 08:37

Hi,

My father was diagnosed with advanced prostate cancer in 2019. Gleason score 10. He has been through chemo and had all the hormone treatments gradually fail (he now just has injections). In June he was rushed into hospital for spinal cord compression and underwent surgery. Unfortunately two weeks later my mother had a severe stroke and is now in a nursing home so I am trying to help as much as possible. At first my Dad improved but he seems to be going downhill again, he took a tumble the other night and says his legs are weak but that could be lack of use. Does anyone know if cord compression can return after surgery? He is supposed to have a meeting on Monday about possible radium 223 treatment and then an oncology meeting on Tuesday but this seems to be going downhill fast again.

He is under hospice care and they are trying to control his pain which is now in his hip. 

Any advice would be gratefully received.

User
Posted 06 Nov 2021 at 09:46

My guess is that yes it can return as it could be another tumour growing. As it is a very serious condition you need to act fast. Neither you or I know exactly what to do now, but this is a better safe than sorry situation. Read the following link, if it doesn't work copy it into your browser or just Google for the article. Then I think I would call NHS 111 to get better advice.

https://www.christie.nhs.uk/patients-and-visitors/services/metastatic-spinal-cord-compression-mscc/information-for-mscc-patients/signs-and-symptoms-of-mscc

 

 

 

Dave

User
Posted 06 Nov 2021 at 09:58
Yes, spinal cord compression can happen again in the same place - or it can happen in a different place. It could just be that he is becoming weaker. The palliative care team will advise you if they believe that dad is moving into the end stage
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Nov 2021 at 09:43
No, these are not new treatments - they are long established and I would snap their hand off! Zoledronic acid is better known as Zometa and it helps to stabilise the bones - but it can cause problems in the jaw which is why he has to see a dentist first. Dexamethasone is a steroid to help the body cope with the Zometa - dexa is also used for lots of other medical conditions.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Nov 2021 at 10:10

Originally Posted by: Online Community Member

... but I really don't know what they are trying to achieve...?

Don't be so sure that they know the answer to that! As far as the medics are concerned we are just a load of scans, test results and numbers. They look in a book and if this scan result is X they prescribe Y, then you get a side effect and they add Z and so it goes on until you end up like a maraca.

Don't take this in anyway as anti medicine or anti science. The procedure that is followed is the best way of getting the desired outcome, though no one has bothered to find out what that desired outcome is.

A friend of mine recently died of a different cancer. He at least knew what his desired outcome was so was able to choose his treatment accordingly.

I think I will give a short summary of his life story so you can see why he chose his desired outcome. It may help others realise they have a choice and make a decision.

Names and events changed to protect the innocent:

Fred was born during the war worked as an engineer and ended up running a small business. He was happily married and had a small family (who have now taken over the business). He had a comfortable life and enough time and money for hobbies.

I met him in his early 60s

In his mid 60s his wife died of cancer, it was reasonably quick. He mourned her but got on with his life. He then acquired a kidney disease I don't know the full story, he was out of action for about a year, and semi-retired from the business. I think he realised he had to make the most of his life. He had a string of girlfriends, several posh cars, and regularly went to motorrace meetings (not my cup of tea). When I last met him about three months before he died he looked drawn and ill. I asked if he was going to Goodwood race. He said no, I've been there 10 times if I go this time I will be in a wheel chair, I know my friends will do everything for me, but I won't enjoy it, I want to remember it the way I used to enjoy it.

He died a couple of weeks ago. He had pain medication, and hospital treatment to relieve symptoms, but refused chemo, etc. Because of his wife's and his own previous illness he knew what medicine, could and couldn't do. His decision about Goodwood was the same decision he made for his end of life for the same reason.

I am glad I managed to see Fred that last time we were outdoors sitting around a bonfire and he was as happy as ever. Their are probably ten occasions in my life where I have learnt a life lesson, some as early as school days, Fred's Goodwood statement is added to that list. His decision was right for him, no one else; they can make their own decision or just go with the flow. Doesn't matter the destination is the same, try and enjoy the journey.

I started typing this before the other replies, they are far more practical help.

 

 

Edited by member 13 Nov 2021 at 10:12  | Reason: Not specified

Dave

User
Posted 13 Nov 2021 at 12:46
Zometa can reduce pain and, perhaps more important, reduces the risk of spontaneous fractures. The last thing your dad needs is for his pelvis or whatever to crumble.

Have you checked whether he is entitled to PIP or similar benefits? If oncology or the hospice team confirm that he is nearing end of life, the money can be used to help pay for home care, night sitters or practical equipment like grab rails.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Nov 2021 at 23:13

Thanks for the update ladybird, I'm glad the hospice and nursing home are working well.

Dave

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User
Posted 06 Nov 2021 at 09:46

My guess is that yes it can return as it could be another tumour growing. As it is a very serious condition you need to act fast. Neither you or I know exactly what to do now, but this is a better safe than sorry situation. Read the following link, if it doesn't work copy it into your browser or just Google for the article. Then I think I would call NHS 111 to get better advice.

https://www.christie.nhs.uk/patients-and-visitors/services/metastatic-spinal-cord-compression-mscc/information-for-mscc-patients/signs-and-symptoms-of-mscc

 

 

 

Dave

User
Posted 06 Nov 2021 at 09:58
Yes, spinal cord compression can happen again in the same place - or it can happen in a different place. It could just be that he is becoming weaker. The palliative care team will advise you if they believe that dad is moving into the end stage
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Nov 2021 at 10:03

Thank you for your reply.

Also, thank you to the gentleman that sent me a private message regarding this, unfortunately it won't let me reply as I am new to the group.

I will contact my Dad today and find out how he is (unfortunately I live 150 miles away so I am trying to visit as often as possible and deal with situations remotely as they arise).

The hospice were supposed to call him yesterday for an update but they didn't make contact, so we will contact them today and raise the issue. 

Last time he was texting me to say that he couldn't get out of bed before I managed to arrange for emergency treatment so I dont want to miss the warning signs again. 

User
Posted 06 Nov 2021 at 10:48

Hi ladybird, I didn't notice you are new to our group, so welcome. There are about 100 of us who post moderately frequently and perhaps 20 who have a lot of knowledge and experience, Lyn being one of them (I'm sure she is blushing now). 

Sorry to hear how things are going with both your parents health. It's very important you look after yourself too, in fact it is important you put yourself first. It is a fact of life that our parents will die, and struggling to prevent that will be as successful as King Canute's attempt to stop the tide coming in. So try and make their lives comfortable, do no harm, try and do good, but don't fight the inevitable.

Dave

User
Posted 06 Nov 2021 at 12:19

Hi Dave, thank you so much for your reply. We have certainly had a tough year and I can't see things getting any easier. I must admit that my concern is not necessarily extending life, I just want my Dad to have quality of life which I don't feel he has at the moment. My parents are only in their early 70s so this has come quicker than expected. It would help if we had a prognosis but I can't force my Dad to ask if he doesn't want to know. Three years ago they said he could have up to 10 years and I think he is still holding on to that. But that was before the hormone treatment failed and he had to have the surgery.

I am trying to look after myself as well, especially as I have deteriorating heart valve disease, but I can't say the stress isn't getting to me. 

Interestingly we grew up where King Canute was said to have tried to hold back the waves so I know the story well! 

Edited by member 06 Nov 2021 at 20:50  | Reason: Not specified

User
Posted 13 Nov 2021 at 08:04

So, my Dad had a meeting on Monday with the specialist about possible radium 223 treatment but they have said that he is too weak at this point and they will review it in the new year (he hasn't been eating properly and has lost so much weight he can hardly walk). The scans showed that the cancer is widespread in his bones but not in his organs and there is no sign of a new spinal cord compression. 

The next day I took him for an oncology meeting where we were baffled with new drug facts and statistics. They want him to start daily tablets of dexamethasone and monthly infusions of zoledronic acid. He has got a dentist appointment on Monday to check he is okay to start the treatment, meanwhile the hospice has upped the amount of Oxycodone he is on and the slow release tablets seem to be helping with the pain. He is also on naproxen twice a day amongst other pills, he is a bit like a maraca!

Can anyone tell me about these new treatments they want to try? I am so baffled by all the different medications they keep adding, I have made him lists of everything that he needs to take, when he needs to take them and what it does, but I really don't know what they are trying to achieve, do they want to help relieve pain, prolong life or both? They mentioned something about the zoledronic acid shrinking cancer in about 10% of patients and my Dad has clung on to that but I can't find anymore information about it.

I am so bewildered and confused.

 

User
Posted 13 Nov 2021 at 09:43
No, these are not new treatments - they are long established and I would snap their hand off! Zoledronic acid is better known as Zometa and it helps to stabilise the bones - but it can cause problems in the jaw which is why he has to see a dentist first. Dexamethasone is a steroid to help the body cope with the Zometa - dexa is also used for lots of other medical conditions.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Nov 2021 at 10:01

Thanks Lyn, He hasn't questioned whether to accept the treatment or not, if it helps the pain and gives him strength it is a no brainer. We have already booked the dental appointment. I have just got confused by everything they were telling us, is it just for pain and bone strength or can it help to prolong life? At the moment he is getting weaker as he is in too much pain to care for himself long term. My brother and I are trying to help as much as possible but there are so many complications. We are going to try and sort carers coming in to at least help him prepare food and shower, but everything that is tried, different medications and equipment, seem to help for a short time and then stop working within a week a week or two. 

User
Posted 13 Nov 2021 at 10:10

Originally Posted by: Online Community Member

... but I really don't know what they are trying to achieve...?

Don't be so sure that they know the answer to that! As far as the medics are concerned we are just a load of scans, test results and numbers. They look in a book and if this scan result is X they prescribe Y, then you get a side effect and they add Z and so it goes on until you end up like a maraca.

Don't take this in anyway as anti medicine or anti science. The procedure that is followed is the best way of getting the desired outcome, though no one has bothered to find out what that desired outcome is.

A friend of mine recently died of a different cancer. He at least knew what his desired outcome was so was able to choose his treatment accordingly.

I think I will give a short summary of his life story so you can see why he chose his desired outcome. It may help others realise they have a choice and make a decision.

Names and events changed to protect the innocent:

Fred was born during the war worked as an engineer and ended up running a small business. He was happily married and had a small family (who have now taken over the business). He had a comfortable life and enough time and money for hobbies.

I met him in his early 60s

In his mid 60s his wife died of cancer, it was reasonably quick. He mourned her but got on with his life. He then acquired a kidney disease I don't know the full story, he was out of action for about a year, and semi-retired from the business. I think he realised he had to make the most of his life. He had a string of girlfriends, several posh cars, and regularly went to motorrace meetings (not my cup of tea). When I last met him about three months before he died he looked drawn and ill. I asked if he was going to Goodwood race. He said no, I've been there 10 times if I go this time I will be in a wheel chair, I know my friends will do everything for me, but I won't enjoy it, I want to remember it the way I used to enjoy it.

He died a couple of weeks ago. He had pain medication, and hospital treatment to relieve symptoms, but refused chemo, etc. Because of his wife's and his own previous illness he knew what medicine, could and couldn't do. His decision about Goodwood was the same decision he made for his end of life for the same reason.

I am glad I managed to see Fred that last time we were outdoors sitting around a bonfire and he was as happy as ever. Their are probably ten occasions in my life where I have learnt a life lesson, some as early as school days, Fred's Goodwood statement is added to that list. His decision was right for him, no one else; they can make their own decision or just go with the flow. Doesn't matter the destination is the same, try and enjoy the journey.

I started typing this before the other replies, they are far more practical help.

 

 

Edited by member 13 Nov 2021 at 10:12  | Reason: Not specified

Dave

User
Posted 13 Nov 2021 at 11:13

Thank you Dave, My Dad has said he hasn't reached the point of wanting to stop treatments yet so that is good, he still has some fight in him. 

Your story reminds me of a lady in our family who was diagnosed with cancer in her 80s. She had seen both of her sisters die from the same disease after going through every treatment out there so she said she didn't want that. Everyone is different, that was the right decision for her. She died peacefully in her own home with family there having chosen not to go through any tests or treatment. 

User
Posted 13 Nov 2021 at 12:46
Zometa can reduce pain and, perhaps more important, reduces the risk of spontaneous fractures. The last thing your dad needs is for his pelvis or whatever to crumble.

Have you checked whether he is entitled to PIP or similar benefits? If oncology or the hospice team confirm that he is nearing end of life, the money can be used to help pay for home care, night sitters or practical equipment like grab rails.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Nov 2021 at 12:46
Dave, your story is lovely
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Nov 2021 at 13:14

Thank you for your reply. He does get attendance allowance and when my Mum had her stroke, so my Dad was left on his own, I managed to get him an alarm system, hand rails and other equipment provided. But I still worry, he had a tumble the other night and there was nothing I could do from 150 miles away. You are right, the last thing he needs is a tumble where he breaks a bone. At least I know he has the alarm so he would be able to get help in an emergency. 

User
Posted 26 Nov 2021 at 19:38

So, this time two weeks ago my Dad had weak legs but he could still climb the stairs, I moved his bedroom downstairs just to be on the safe side. My brother went to stay with him the following Tuesday and by Wednesday night my Dad couldn't even get out of bed. The hospice were great and arranged fast track NHS continuing Care and on Saturday my Dad moved into the nursing home that my Mum is in (he has the room opposite). I don't know if his spinal cord has compressed again, his ct scan in October suggested not, but I am realistic, I know they won't be able to do anything now anyway. He is initially in the home to see if he can build his strength and regain mobility with idea that he can return home but after a week there he is still being hoisted out of the bed. Apparently it was difficult to get the NHS funding as he isn't officially end of life but he has certainly gone downhill very quickly with his mobility. We have no idea where we are going with this but at least he has 12 weeks paid at the home to see what happens.

User
Posted 26 Nov 2021 at 23:13

Thanks for the update ladybird, I'm glad the hospice and nursing home are working well.

Dave

 
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