Spindle cell sarcoma (tumour affecting lumbosacral nerve roots)

Hello - hope this note finds you well, and knowing that you are not alone.

Saying hello and looking for moral support, please…

Results: My husband has been diagnosed with spindle cell sarcoma a couple of weeks ago; after suffering sever nerve pain around groin/knee area; and initial GP visit in February24. Since February, my husband had x-ray, 3 MRI scans, CT; PET and biopsy which lead to the result. The pain has been horrid, even with morphine, the relief is very limited.

Location of tumour: a nerve tumour (left side) extending from L3 to L5 levels and continuous with left L3 nerve root;  affecting the lumbosacral nerve roots causing severe nerve pain

Treatment: per consultant, the good news is that the PET scan hasn’t shown sign of spread; and they can and intend to remove this tumour (full biopsy afterwards). We got dates for pre-op assessment in mid-July and surgery date shortly after, if my husband can keep or gain some weight  BUT, the more disruptive/upsetting news is that they will have to remove my husband’s left kidney, as “margin”, with the risk of further removal of surroundings. This was incredibly hard to take and process…. I couldn’t help but thinking it has been almost 3-month since last scan, and what if the tumour has grown …

The pain has been increasingly aggressive since February, with last MRI scan in early April; and mobility is very limited; independent but challenging with daily tasks. GP has just prescribed a “patch” (Fentanyl) to help relieving the pain; only got it yesterday..

There are times during the day when I completely blank/numb about the whole diagnosis; then it hit me like living in a nightmare… we have 2 daughters; and as a family we are keeping our spirit high and staying strong for the fight. This has been the hardest few months of my life, knowing more challenges ahead… I feel so alone at time, even though I have friends/colleagues’ love and support, as well as my husband’s family.

But I am scared…

If you or your loved one are going through similar journey I AM WITH YOU!

Thanks for reading.