Hi
I thought I would share my recent experience as it might help someone else in a similar position.
I had a recent consultation with a local surgeon as I’m anticipating having my bladder removed (RC) after receiving chemo & immuno for 3 months (niagara protocol)
My local surgeon was very austere, hadn’t read my notes before the appointment and spent the first 10 minutes fumbling through the papers I had brought in.
He then told me that my RC would remove all my lady bits and sex would be 'impossible’ . I’m realistic and realise some workarounds may be required, but impossible’ is a big word! He also told me that my only option would be an IC. I’d read that a neobladder can be difficult for women but an Indiana pouch (as the Americans call it) could be feasible.
To cut a long story short, I felt very uncomfortable about this surgeon doing such a big operation on me…in terms of my confidence in him as a person and his approaches/advice.
I am lucky in that we have medical insurance (bupa) so thought I would research other surgeons. I saw that the team at the Royal Marsden tend to favour organ/genital/nerve sparing approaches. I had a consultation with one of their surgeons yesterday and it was so much better. He told me that I do have choices including genital/nerve sparing and that the Indiana pouch is a possibility. They are arranging for me to meet the team and other patients that have been through the RC with them. They are also arranging a PET/MRI scans, as if only received a CT scan locally. It was literally ‘light and day’ compared with my experience of my local surgeon.
I know everyone may not be in my position and able to select their surgeon. Where you can I would definitely recommend doing your research though and getting the benefit of other people’s experience.
Lx
