Spine mets

[Desi-2]

Thanks everyone for your help. Glad your problem was treated and is better now Belinda at least I know it can be helped now xx

[belinda]

Hi again Desi, yes, my fault, I said the pain was doable when all of a sudden it wasn't. A CT showed nothing but an MRI showed nerves being squashed as they travelled down leg. So Much better now. X

[ponsmuir]

Desi,
I was within a whisker of spinal cord compression just over a year ago. I was in a lot of pain with it but had no idea what was wrong with me. I was admitted as an acute case through A&E and spent 3 weeks in hospital.
I had extensive rads, steroid treatment and Letrozole.
Letrozole can give a lot of people dull aches in joints and bones which can be alleviated with Paracetemol. I had a great response to it and discomfort even when it was working well. Unfortunately Letrozole is now less effective and I am taking Irosustrat on a trial to help with the blocking of oestrogen. I have more aches and pains than before, 5 weeks into the trial. As someone has said on this page, it's a question of holding one's nerve and trusting that you'll be rescued quickly in the event of more spread.
Not an easy journey, but there are lots of treatments and help available.

[Desi-2]

Thank you Sue for your reply I'm quite new to all this but am finding it reassuring to be able to speak to others who have more experience than me in all of this xx

[pumpkinsue]

Dear Desi, 

                   After reading your post I just want to say I am thinking of you.  I have bone mets too.  The worst one led to a break in the kneck of my femur.  The pain with that wasn't constant but came and went over months.  I had pain on and off from December 2012 until the fracture in May 2013.  I also have 3 other micromets in my coccyx, thoracic spine and the big bone in pelvis.  I wonder with your symptoms if they could perform a more detailed scan to check the exactly what is going on.  It would hopefully help to put your mind at rest.

Wishing you all the best.

Sue XX

[Desi-2]

Okay thanks Helen xx

[2catlady]

Hi,desi,that's what I've been told about SCC that it comes on suddenly and very painful. Bone mets can feel like an ache or pain. My onc.said sometimes it's a case of holding your nerve with hormone treatments as they can take a while to kick in.8-12 weeks.
As Belinda said it's up to you and not your BCN about which onc you want.
Ask your onc for rads as sometimes they rely on you telling them you are in pain and how bad.
Good luck with your treatment and huge hug,Helen xxx

[Desi-2]

Hello Belinda

Do you mind me asking whether you had to wait until the pain in your sacrum was really bad before you had the radiotherapy?
Thanks x

[belinda]

Hi Desi, I have had rads to the sacrum twice, a number of years between both times. I've always been told spinal cord compression is sudden and extreme. In your shoes I would ask to see someone else, it's all very well your BCN saying she thinks he's the best but if YOU are not happy or have little confidence in your Onc it should be ok to see if someone else might be more in tune with you.

[Desi-2]

Hi Tinkerbelle
I had an MRI at the same time as the bone scan which were only e few weeks ago but I didn't have this strange ache then it's only started earlier this week. The MRI did not show any compression at the time but I'm wondering how quickly things can change. I'm on letrozole at the moment but the onc said it was only a slight chance of it working as my receptor level is only 3/8 I think this is probably not helping my worry of things spreading rather quickly. I'm not due to see him until the 11th March and am struggling to have faith in him anyway. I asked my BCN about changing to another ONC but she said he is probably the best one for me so I kind of feel I'm at their mercy! I think he's trying to give the letrozole time to see if it will work before going to chemo. I've not had it before and must admit I would like the hormone treatment to work really but at the expense of further spread.

Thanks for your reply xx

[Tinkerbelle]

Hi Desi,

I'm afraid I can't give you any useful advice on how spinal mets feel as I am one of the fortunate ones that at the moment has no pain from them, but the warning signs of spinal cord compression are what the onc reg mentioned:

numbness, pins and needles in your legs or loss of control of bowels or bladder plus numbness in your

hands or around your bottom or genitals.

The onc sounds like a right charmer!    If they thought there was the slightest risk of spinal cord compression after looking at your scan I would have hoped that the doctor would have checked more thouroughly as to what these lesions were.  Did the onc say that they were going to scan you again to find out what these 'somethings' are?

Sorry I couldn't be more help; hopefully someone with more experience of bone mets pain will be along soon to reassure you. 

I know how awful the anxiety can be.

Tink x

[Desi-2]

After a recent scan there was something showing on my sacrum, neck and lumbar area, although the report did not state these were definitely cancer they weren't there originally there, I have now been getting a strange feeling in the sacrum area kind of a dull ache . I rang an emergency number for the oncology registra and was told unless I had numbness, pins and needles in my legs or had lost control of my bowels or bladder to just take a painkiller! Surely there would be more warning if the bone were to fracture and can't something be done to prevent this happening, I'm scared stiff at the moment that my spine will fracture and I will be left paralysed. Can anyone give me any advice as to what to do or warning signs. I don't have extreme pain just a dull ache.