Hello lrwants2know,
My husband had highly aggressive muscle invasive UC in the bladder diagnosed in 2019. After partial cystectomy and 29 l. nodes removed (all clear but 1 closest to bladder) he started Gem/Cis treatment. Recurrent abnormal cells and suspicious spots on cystoscopies, TURBs, BCG failure, Pembrolizumab failure, and he got tired of the procedures and had radical cystectomy with neobladder formation. December of 2021. All recurrences were non muscle invasive but we know the tumor type so expect progression. After multiple issues with postop complications, retrograde ureteroscopy, neph tube, repeat ureter attachment via robotics, he just had a final robotic surgery to repair his huge incisional hernia. All the care has been at Mayo Clinic MN, for surgeries not always available by local urologists. I totally understand what you are going through and how terrifying it is but you are doing a great job researching and advocating for your care. I understand from Canadian friends with cancer that you must do this for yourself with your health care system. We have also found that being knowledgable about your medical condition is a huge plus. We have also had a lot of experience with complementary therapies with my cancer (Head & Neck SCC) of 11 years. Include in your research the various ways to boost your immune system such as beta glucan, diet changes, probiotics, Vitamin C, etc. I know there are naturalists in Toronto area that my friends used. Qubiologics.com is doing a lot with immune therapy and located in BC. While these never take the place of traditional medicine, they may improve your odds of fighting this cancer with your own immune system. I know it is a lot of work researching constantly while undergoing all the rest. A favorite book to give hope is How Not to be My Patient by Edward Creagan, a palliative care doctor at Mayo Clinic. Good luck to you in this battle. Susan