Kidney cancer

Sorry to hear of your bad experiences. I haven’t found this although I do sometimes feel that I am not told as much as I would like to be told. I do ask questions of the doctors, having worked out beforehand what I think I need to know. Often the answers seem vague or unspecific, probably because there is less certainty about my future than I might like. Generally I have found the consultants try to be reassuring. Do you have a specialist nurse? If so they would be good to contact about feeling confused and uninformed. Best wishes and I hope you can get some answers. 

Thank you for replying I don’t have a specialist Nurse. I don’t know my oncologist name. I am being monitored by urology surgeon who operated on me and the dialysis unit CT scan every 3 months told I still have cancer but it has not reestablished itself whatever that means?

I was monitored by urology too. I would definitely ask questions at your next consultation. Take someone with you if you can, to write down the answers at the time or if that is not possible make notes immediately after the appointment. If you don’t understand say so or ask for more detail. I have notes going back to my diagnosis in 2020 and had occasion recently to refer back to find a phone number I’d been given.

My hospital has an app and the doctor puts online copies of letters he sends to my GP which I find very helpful for reminding me what he said. It also means that I can be sure of the medical terminology and look up any I don’t understand.  

Don’t worry about asking questions or asking for explanations. They must expect it! You mention different professionals being involved so I hope you have some success.