Hi,
I am sorry to bother you but, I was diagnosed with kidney cancer after going to the doctor about something else.
I had lots of scans and was initially diagnosed with locally spread suspected rcc in June. The initial treatment plan involved a great immunotherapy combination followed by a radical nephrectomy. But this relied on a supporting biopsy. I had two biopsies but the tumour and the affected lymph nodes are necrotic and neither biopsy was usable. The second one also gave an unreliable indication - possibly consistent with tcc - but the necrosis makes it impossible to give a diagnosis. I was passed back to the surgical team by my Medical Oncology Consultant who is wonderful and arranged for me to keep my contact clinical research nurse (who is also wonderful). My Consultant told me that a radical nephrectomy was the best way forward now so they could establish what the cancer is and then work out how to control the disease. Since then, just over two weeks ago, have been given a ct scan and a PET scan (last monday). I was told this was to establish whether there was any possibility of using the PET scan to guide the biopsy needle to any still living cancer in the lymph nodes. But when I was in the PET suite I was told they were looking at my bladder and ureters. I showed them the email about the lymph nodes. I have already had a cytoscopy which seemed to be normal. My contact had intended to email me with an update yesterday but nothing came. I am nervous.
