Hi, I'm Joshua. 36.
In may 2024 I was diagnosed with right kidney cancer. Initially it was a 10cm tumor on 16cm kidney.
At the end of July I had a radical robotic Laparoscopic nephrectomy. The surgeon was surprised as the tumor was much bigger than expected.
The kidney was 23cm with a 19cm tumor weighing 2.2kg. The pathology diagnosed it as chromophobe renal cell carcinoma with extensive sarcomatoid differentiation with over 95% of it being sarcomatoid. Grade pT3a.
My gp was like prognosis was very got it all, I just have to have scans every 6months for 5 years.
When I had a follow up appointment at end of September, the surgeon is more concern that I was still in pain from incisions and removal area. Plus having dizzy spells plus severe nerve issues down right thigh and groin.
We also did our own research into the cancer type. But mostly into chromophobe side as doctor was so positive about prognosis.
I am still struggling and pains I had before removal are returning. I have done further research into the whole diagnoses and I'm worried that the 95% sarcomatoid is a major concern as it's a poor prognosis.
Please does anyone have their own experience or thoughts.
I want to talk about it more with people who have experienced similar. My aunts have offered to talk but they had breast cancer and though severe they are in remission for a long time.
Thank you anyone you replies or comments
