I presented at hospital on Saturday with weakness and loss of sensation in my left leg.
I had an MRI which cleared a spinal injury, but showed up my lump, which is in the left side of my back/spine, midway, which I saw the GP about on 1/8/24, and was due an ultrasound on 19/8/24.
In December 2023, I was put on an urgent 2 week cancer pathway after losing 20kg weight, I had numerous tests, including endoscopy and Contrast CT of my thorax, which I was told were clear.
I’ve had a Brain CT to rule out stroke, because of my symptoms of left sided loss of feeling and weakness, this however has shown above average atrophy changes for someone my age,
Neurology has been to discuss, and I’ve got to have an MRI for more detail, but no evidence of stroke.
My Lump is being referred to Sarcoma MDT, I’ve got to have a focussed MRI and biopsy while I’m in hospital.
I’ve been told by 2 consultants that The Lump was on the contrast CT I had in January when I was on the urgent cancer pathway…they asked why it wasn’t looked at then, but appears it’s been missed and not reported, and has grown.
I’ve been told the lump measures 4cm x 3cm x 2cm, but I’m not sure if that was the reading in the CT in January, or the MRI I had on Saturday.
Since Saturday, I’ve had Neuro and Spinal consultants refer to it as a Lump, a Tumour, a intramuscular sarcoma and a cyst, but no one will commit or give opinion as to what it is or how serious it is, all I get told is I need to wait for the focussed MRI,Biopsy, and see what the treatment plan is from Sarcoma MDT.
My MRIs are at 8am.
Naturally very worried, feel like I’m being kept in the dark, and not sure where to turn to.
Hi ATF1985
Welcome to our community thought sorry to hear about what you are going through.
My wife's sarcoma though very different was also only diagnosed after a great many tests. The doctors also struggle and while sarcoma, like all cancers, has a very high profile it is quite rare and so many will have little experience.
With my wife they were convinced she had cancer and looked pretty much everywhere for it sometimes dismissing other issues as a red herring - that was not helpful but a long story.
Where are you being treated? We are lucky to be in Oxford as that is one of the sarcoma specialist centres.
My wife's sarcoma was eventually treated with two lots of chemotherapy and while incurable has shown no evidence of growth now in over 10 years so as she says - living with rather than dying from.
<<hugs>>
Steve
