Hi there. New here.
My dear husband (33) got a radical nephrectomy in April 2021 for a 14cm tumour on his left kidney. Pathology result came, and it's a rare cancer called collecting duct carcinoma. A very rare and aggressive kind of non ccrcc that has no established any therapy protocol. The first time we went to medical oncologist we've been told that he will be on 6 cycle of GemCis to help prevent recurrence. But unfortunately his newest scan result shown it's spread to lung and liver. Small lesions but it's pretty scary how it grew in only few months.
He will still get the chemo to hopefully shrink or stabilised the disease. But we don't have other treatment options. I asked about targeted therapy and the doctor said that we have to do some tumour dna sequencing first, but that will take 3 weeks. And his tone just so unpleasant it feel like he gave up on us already.
We are not going to give up this easily, and will start and try to find second, third or even forth opinion on our case while taking the chemotherapy. If anyone here have experience with this type of renal ca and could help us in any way (maybe hospital or medical oncologist recommendation, any trials, etc) we will be forever thankful. We are based in London :)
Good luck to everyone taking their therapy xxx
