My brother was diagnosed with rcc last april,2010 after invesigations into heamaturia and heavy feeling legs! No other symptoms were present.
During investigations into bladder infection! (i wish) and a CT scan it was discvered he had a 10cm tumor on his right kidney with vena cava involvement, he was fast tracked to the christie and to withington hospital with a wiew to urgent surgery (Nephrectomy) However this was deemed not safe at present so the docs did a pocedure called Embolisation to stop the blood supply to his kidney in hope that the nasty thing would shrink, i was with my brother throughout this operation in theatre, he was amazing, so so brave i talked his ted stockings loose and all went well, things seemed gradually better, less blood in water, weight gained, for a few weeks.
The frank heamaturia returned with large blood clots so we went to hospital and he was admitted, the operation was repeated as the docs could see vessels missed first time, so off we went again.
This was so bitter sweet for me, as i am a nurse and was absoloutly amazed and priveliged to see such a procedure done, however this was my sweetheart brother whom i adore and have an amazing relationship with, i had to trust the medical team to do what i couldnt.
I dont think i stopped crying for days and days, but i was as strong as an ox when with my R. Result it worked and things got a bit better for several weeks he gained strenghth and weight, he was started on Sutent, this gave him 4 months of stabillity, then scan showed progression in lymph nodes, the sutent was withdrawn and we were offered Temsirolimus trial at the Christie in Manchester, of course we have nothing to lose so took this chance both for R and for all of us for the future.
He has faced this with such grit and bravery, the trial has been tough and have recently had a 2 weeks break due to awful side effects, his 1st scan since starting the trial is on tuesday11th Jan, i am terrified for him, i am routing for stability at least, for shrinkage at best, thats the only way we can possibly have nepherctomy with a lesser risk, R is very fatigued and aching at the moment and blood clots and bleeding are back, i am exhausted looking for a pathway to help and ease his trauma and pain.
To be continued.... Love and hope to all XXX Pati
