Update on my journey
I have had bladder since 2020. I have posted before on what my team was thinking. Well things have changed again. My CIS is in my bladder and now in my left ureter where bladder and ureter meet. In my right ureter where the kidney and ureter meet I have T1 high grade urothelial carcinoma.
I have three options,
1. remove bladder, ureters, and one kidney get stoma
2. Have 4 cycles of carboplatin/gemcitabine with 6 treatments of gel mitomycin put in both ureters. This is a cowboy approach as they call it. The gel has been approved by the FDA for CIS. there is no data for T1.
3. Go through number 2 and then have the surgery
I know we all have different side effects from these poisons. Has any one had the gel treatments?
I am not a fan of chemotherapy at all. The doses I received before were light doses. This will be a heavier dose. I worry about the ringing in my ears and how it could make it much worse.
I am hoping you can share some of your side effects from your journey.
Thank you and stay strong even though at times it seems impossible to do so.
hi. Thanks for updating us. Sorry you be are going through this. I don’t have any experience specific to your situation to share but I can tell you, it is a possible to live a good life with a stoma. I have two stomas due to my surgery for advanced bladder cancer. I do everything I did before. If you go down this route, please ask any questions and I will be happy to answer them for you. Laura, Moderator, BladderCancer.net 
@Spomes55 - I wish you had better news to report. I have not had chemo so I cannot help with that question. Have you had a 2nd opinion regarding your options? It may be of value to do so but clearly that is up to you. I am not a medical professional and cannot provide medical advice but wonder what type of RC diversion you would have if it comes to that treatment. As my stoma is connected to my ureters, I am curious as to how that would work if they are removed. I am sorry that I cannot be of more help but hope that others who have had one of these treatments will provide comments on how they fared with side effects etc. Please keep us posted and know that we are always here to provide support. My best to you. Linda Urbanski (moderator, Bladdercancer.net team member)
the stoma part doesn’t scare me as much as the chemo does. Three months of chemo and not knowing if the gel will work on high grade T1. They will use a piece of intestine to make a ureter for the stoma. @Spomes55 - I understand your concern regarding the chemo. I had mitomycin after both of my TURBTs and I did not personally have any side effects but I do not know how my dosage would compare to yours. Have you asked which procedure your medical teams feels would have the best outcome for you? A stoma is attached to the ureters as it is replacing the bladder. I have had mine for over 8 years. I am just wondering how yours would be connected if both or your ureters are removed. Wishing you the best. Linda Urbanski (moderator, Bladdercancer.net team member)
They are going to take a piece of my intestines make it a ureter that will go from my one kidney to outside to be my stoma.
@Spomes55 - thank you for responding. I was not aware that a ureter could be made from the intestines. My "setup" is that my ureters are connected between the kidneys and the stoma. So basically they are circumventing the ureters and connecting your kidneys directly to the stoma? Wishing you well whatever options you decide to more forward with. My best to you. Linda Urbanski ( moderator, Bladdercancer.net team member)
what are the next steps? do you have another meeting with your doctor planned to discuss the best options? Thinking of you and wishing well. Laura, Moderator, BladderCancer.net
