Hi there,

I've been meaning to post on this forum for some time it life has been hectic over the last 5 months.

Mum was diagnosed with triple negative breast cancer with spread to 10/12 lymph nodes in march 2017. She completed chemo and radio which took her to December 2017. At this point mum was told that this would at the very best halt the cancer from spreading. All scans looked good following treatment. There were no signs of it spreading. Happy days.

Fast forward to June 2018. Following a routine ct scan it was clear that the cancer had moved to the T4 area of spine.

Due to the triple negative diagnoses, mum was told that her disease was incurable but potentially treatable. Treatment offered was standard radiotherapy or being included Ina stereotactic radiotherapy clinical trial.mum was selected for the latter, and all was well. Ct scans showed no progression.

Fast forward Feb/march April 2019, mum is persistently complains of numbness in fingers, arms, and eve usually starts affecting her legs. We the family, asked oncologist, gp etc about the symptoms and she was told it could be effects of chemo/ bone strengthening injections on multiple occasions. She was referred for physiotherapy.

she continued to deteriorate until I suggested she go to a&e. Where she found out, after several days it was leptomeningeal disease.

Mum quickly deteriorated over the next two - three months to the point she was brought home for end of life care. She did not know me, her husband, such was her delirium.

she was sedated for the majority of that time but then started to stabilise toward the end of that period.

the Macmillan nurse then suggested we taper off medazolam.

since then, mum has got progressively better to the extent she is able to sit comfortably in a chair via lift.

my question is: has anybody else experienced this? The prognosis was a few months at best, mum is now alive and getting better day by day.