Hi all, I’m 6 weeks out from finishing 5 weeks cisplatin chemoradiotherapy with 3 brachytherapy and concurrent immunotherapy for stage IVA cervical cancer
I had a Nephrostomy inserted prior to starting treatment as the tumour (7cm) had grown around my left nephron, and also started invading the bladder wall to the mucosal layer in some parts.
I’m struggling with my mental health and the Nephrostomy as I can’t do all the things I used to be able to do. It’s constantly itchy, infected and I often get tangled in the tube during the night and covered in urine. I absolutely hate it. Alongside medical menopause it’s hit me really hard.
It was inserted ‘urgently’ and I feel like I wasn’t given informed consent at the time. I was sent home with a phone number, which was wrong, and had no idea where I had to go that week for the flush and urostomy change. I had no idea there was no plan to review it or my ureter function, and I’m not sure a urologist has ever reviewed my case, only that the oncologist has ‘asked them questions’ and some of the information fed back to me has been incorrect, at least according to the radiologist.
Apparently they normally assess at the 3 month post treatment scan? I’ve pushed for them to do something and was offered a stent, but declined as have heard nothing but horror stories about them. Also neither the oncologist nor the radiologist were able to respond to some of my concerns / questions about it.
I’ve requested an appointment with a urologist to hopefully clear things up. I don’t yet know what my cancer response to treatment is. I’m concerned the ureter will remain damaged from the tumour and radiotherapy and I feel I need to know what the possible options are.
I know I’m supposed to just wait until the 3 month scan but this is causing me a lot of distress and anxiety.
Just wondering if anyone else has been in this position and could offer some advice?
Many thanks
