Hello everyone this is my first post. I've had a stressful few months. Two major surgeries for colon cancer, in theory cancer free... then two weeks later I was diagnosed with high grade T1 bladder cancer, CIS and multifocal. It feels unreal.
The doctors are leaving treatment options up to me. NCCN guidelines prefer BCG but do list cystectomy as an option. The problem is that it took a very long time to get diagnosed with bladder cancer as my cancer did not present visually. I have had intense bladder/ urinary pain for 18 months. White light cystoscopy did not show anything visuall but biopsies came back suspicious of cancer. They then went to blue light which in theory should light up cancerous areas but for me that did not happen. Surgeon took 12 random biopsies which is how I ended up with the current diagnosis of T1 and it does not appear to have invaded the muscle layer (but has invaded lamina propria.
I am talking to five different doctors about whether I should purse BCG or go straight to radical cystectomy. The reason I am leaning away from BCG is twofold:
1. since they can't see my cancer it will be very difficult to track improvement or recurrence.
2. according to this study https://pubmed.ncbi.nlm.nih.gov/32335060/ those who had early radical cystectomy had a 71% five year survival rate whereas those who did BCG had a 52% five year survival rate.
If I do pursue the cystectomy I will not be able to go through with the adjuvant cheo (xeloda) for colon cancer, but losing that opton does not stress me out because the colon cancer chemo only increased survival rate by 3% over five years. Monitoring alone for my stage 2b colon cancer has me at 76% over five year which is pretty good odds.
I am 48 years old, active runner/ hiker/ kayaker with kids and want to optimize my chances of staying alive. But I admit the cystectomy scares the sh!#t out of me.
Any advice/ thoughts would be greatly appreciated. Has anyone here had a similar diagnosis with high grade T1 presenting as flat/ invisible (aka no visible tumors but the cancer is there...)
Many thanks in advance!