hi there,i havent been on the site since last years when i was dx with bc in my left breast, i had a small low grade tumor with 2 nodes involved which i had removed, had 6 fec chemo, 20 rads and arimidex for 5 years, i have complained to my gp for the last few years about back ache, constipation, raynaulds sydrome, numbness in one of my hands that comes and goes, to cut a long story short, i wasnt due to see my onc for a year after treatment finished, jan next year, but my gp sent me for a spine scan and the results have just come back showing what is said to resemble bone cancer in the spine, i have to have a nuclear whole body scan in 2 weeks, i feel so sick, just with worry, i feel like i cant eat, just with worry i mean, although i know it could be something else, i just have a sick feeling in the pit of my stomch, i have read some of the stories on here from the ladies who have had mets for some years,and i fine that reading there stories has helped a little.
Has anyone been told from an mri scan that they have mets, or did you have to have a nuclear bone scan? i know i am panicing, i suppose i just need to talk about things, it is so hard,i should think myself very lucky that i havent definatley been dx with secondaries, but i just dont know what to do with myself.Any advice would really be appreciated.Thanks Sandrae x
Hi Nanny4
This must be a very worrying time for you. Whilst waiting for replies maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information.
The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
Best wishes
June, moderator
bumping it up for you. sorry i can’t help
Hi Nanny4
So sorry to hear you’re in the waiting/limbo space… I was DX with bone mets last November. I first had a CT scan and then MRI and bone scan which confirmed the CT findings. They tend to look at several different types of scan all together to get a more reliable DX. I had spine and sternum mets with several nodes but five months on after treatment my spine met has gone and the sternum met and nodes have reduced in size.
Is there any way you can get the bone scan any earlier?
Thinking of you
Xxxxx
Hi Nanny
Sorry that you have this wait and worry - hope the tests sort out a clear diagnosis so that you are not in this awful limbo with all the anxiety that causes. You might want to see if the scan can be moved forward.
Thinking of you - keep in touch now and as things unfold
Fran
x
Hi Nanny I was in your postion at Christmas 2010 - I had bone pain I thought it was SE from Arimidrex but asked for it to be checked out and I had a nuclear bone scan. The results of the Scan came back with Hotspots which the radiologist diagnosed at mets on my spine and i was given this very bad news. I did however seek a second opinion as I was not convinced of the diagnosis as the pain I had didn’t seem to fit with where they said there were mets. I had a CT scan and the results of this compared with previous CT scan had prior to my chemo were exactly the same and the report came back that in fact the hotspots were arthritis and not bone mets!. I don’t think they can tell if its cancer from only one scan (be it MRI, bone scan or CT scan) they have to compare these results and then they will be in a better position to really know what is going on. I believe the only real 100% way of diagnosing bone mets is a biopsy and obviously this is not feasible on the spine as its too big a risk. If you have had previous scans ask your Onc to check they have compared them - it seems to me Onc’s are sometimes too quick to give a mets diagnosis without fully checking. good luck x
Hi, just a quick add to the last post…
I DID have a spinal biopsy following concerning ct, Mri and bone scans. My mets showed as cold spots not hot spots which was confusing everyone.
The only way to be sure is a biopsy, under sedation and CT scan guided so they know they have got the right bit and it is safe.
Sadly, mine was a tumour. Hope your outcome is very different to mine.
Sadie Xx
Sadie - I’ve never heard of cold spots. How did they look on the scan and did you ever get an explanation for why it was different?
finty x
Thank you all very much for your replies,all i seem to do is cry,i cant eat as i feel like someone is pressing on my winpipe,it is stress,as it wasnt like it before,can anyone tell me how skin mets look?,thank you again,sandrae x
Hi Finty - The cold spot was overlooked by the team that did my bone scan. I think it was bright white. They told me all was ok - a clear scan. However, I was in so much pain I pushed for a second opn. The spinal surgeon took one look at the scan and said ‘im more worried about the cold spot than a hot spot - your body has shut something down’. Ive never got the full story about what exactly it was but I now know not to trust my local NHS team and get a second opn at every stage!!
Sadie Xx