This is my first time on the forum and i’ve just been reading several postings which are of great interest and have given me lots of hope for the future so thanks to everyone.
My secondary breat cancer was diagnosed in July 2007 after 9 years in remission so it came as a huge shock which i’m still trying to come to terms with.
It started as a pleural effusion in the lung and has since spread to spine,chest and now most worrying my liver. My liver diagnosis was missed on 3 scans which makes it even harder to cope with. I’m only 41 with an 11 year old daughter and i am so scared for her if I don’t survive.I am divorced from her father however she does have a good relationship with her BUT I want to be there for her.
Anyway does anyone have any experience of spinal cord compression? Apparently my spine is in a bad way and I’ve been told to watch out for numbness and tingling in my legs as this is a sign that the spinal cord is being crushed (sounds horrendous i know).
I would be really grateful for any help with this.
Welcome to the forum.
So sorry to hear of your woes.
Unfortunately I cannot help you with your spinal cord compression,.
But as a Mum with an 11 year old daughter too, I thought i would send you a cyber hug.
Again, welcome to the BCC chat forums. While you are waiting for others to reply you might be interested in joining the ‘live chat’ sessions for those with a diagnosis of secondary breast cancer. Secondary Live Chat runs each Tuesday evening between 8.30pm and 9.30pm where you can chat in ‘real time’ with others who also have a secondaries diagnosis. To find out more just follow the link below. Hope this helps.
Hello Tracy, yes I know a little about spinal cord compression, I have spinal bone mets. Are you taking bisphosphonates to strengthen the bones and can you have any radiotherapy to any real area of worry? I have had radiotherapy to the sacrum when a trapped nerve was causing pain down my leg…was checked out for spinal compression at the time. Take Care…x
It sounds like you have a lot to cope with. How disappointing after 9 years to have it spread like this. I have had extensive bone mets since 2002 and it involved all areas of my spine. It is important if you have those symptoms your onc mentions to let them know straight away. They don’t always mean it is spinal chord compression but they will do xrays and mri’s etc. to check that out. I know of two people who have had successful surgery to their spine when it has happened. I have a lot of problems recently with my hip and leg - tingling, pins & needles and lot of pain but scans etc. not showing any further deterioration to my bone. Are you currently on any treatment - as Belinda says bisphosphonates are normally used, and they can do rads if you have a lot of pain.
hi Tracey
So sorry to see you here.
I really hope you find us helpful and friendly.
Presumably, you’ve had an MRI to check that your spine is in the condition that they are telling you it is and that you are receiving the biphosponates that the others rae talking about.
I’ve had radiotherapy to the worrying areas in my spine, shoulder blade and hip with good results. Definately, helped the pain and the movement although suffering today with severe shoulder pain again -hey hum,
Have you also joined us on the liver secondary thread - you’ll find us popping up there as well so please join in there too.
Are you receiving any chemo for your liver and chest spread and if so which sort? My bone spread was helped by chemo but chemo doesn’t help all with bony spread?
Where is your spread in your chest? I have extensive lung spread in my lymph system and a solid tumoir. My solid tumour was missed as well despite me being unable to swallow anything. It is so scary that they can miss these things isn’t it?
Sorry - seem to have asked you more questions than given you answers but I know with spiinal compression it depends which vertebrae are effected as it can lead to bladder and bowel problems or loss of feeling in fingers, hands as well as tingling in legs.
I have 11 yr old twins and an 8 yr old son so it is very scary.
I was referred to the hospice nurses 2 years ago and they have been very helpful - it doesn’t mean that you are ajust bout to die if you get referred there. They have helped us with talking to the children about my prrognosis.
Hope you are not in pain and really remember the shock of being diagnosed with secondaries - what a horrible time of year as well.
Thinking of you - do use the helpline they are very good.
Kate
Thank you so much for all your replies,they have certainly helped me to understand a little more about my condition.
In answer to your questions I have just started to be given bisphosphonates although they knew about my bone mets in March 2008 (another slip-up).
I have also just started EC chemo which I reacted to very badly with severe nausea and generally feeling lousy for 2 weeks. I’m just starting to feel a little better but am due 2nd round on Friday. I’m seeing my onc tomorrow to discuss reduced dosage or even a different approach.
They have mentioned radiotherapy to areas of my back but at the moment morphine seems to be doing the trick with the pain.
I get the results of my MRI (spine) tomorrow so i’m hoping the news is not as bad as they are predicting.
Anyway I may join the live chat tonight and in the meantime thanks for your good wishes.
Hoping to be at live chat later so may well ‘talk’ to you later…
The thing that sprung to my mind is that although the morphine is helping the pain, the way I understand it is that the radiotherapy reduces the tumour and so can be helpful in that respect until the biphosp kicks in to help build bone up. They didn’t start my biphos till about 2 months after my bony spread was discovered so it’s very upsetting.
Sorry the EC made you feel so bad. Often they start on one type of antisickness tablets but other more expensive ones may work better for you.
Really hope the results of the MRI aren’t as bad as you think.
Kate
Hi Tracy
so sorry to hear your news - I have secondaries in bones and liver but no experience of spinal compression - so sorry cant offer any specific advice - just wanted to tell you that I have received a lot of support on this site and you will too - i think it is such a lot to deal with and so scary - hope things are ok tomorrow, jaynex
What rotten luck. I had chord compression at T5 T6 as well as symptoms at L5 L6. They intitally thought my spine was stable so the plan was to start chemo and kepp monitoring it. Unfortunately without a month - over xmas actually - my right foot was freezing despite puting hot water bottles on it. This should not happen with compression at T5/T6 - nevertheless it did. My cancer hospital advised me to immediately go to the local hospital and they arranged an mri for the next day. Compression was then diagnosed and within a week I had had a spinal operation by Mr. Nitin Patel at Frenchay Hospital,.Bristol. He has a very good reputation and I believe uses a new procedure. Anyway I now have quite a lot of titanium in my back, but at least I do not have the worst effects of chord compression.
I am happy to give you more help if you wish to contact me, I hope I havn’t frightened you, but if they think your spine is in a bad way, I am surprised they have not explored with you the idea of the same kind of spinal operation.