Learning as I go...
Diagnosed with MIBC on 26 April2023. MRI and CT for earlier TURBT showed cancer only in my bladder. Referred to highly regarded university hospital, first appt. 15 May, with Surgeon, Oncologist, and Radiologist. Offered Clinical Trial of three chemo/immuno infusions that would either clear the cancer and result in follow on observation or serve as the pre RC surgery regimen.
Prerequisites for the study required new scans 25 May. MRI shows prostate penetration, CT shows lung nodule. Oncologist says if lung nodule biopsy positive for cancer, then I automatically go into Stage 4/uncurable cancer category and get immuno therapy to prolong life.
Is that the standard accepted medical - oncology protocol? I am subject to medical professional's scheduling and holidays while the cancer has demonstrated that it gives no quarter. Looking for any advice from more experienced. I left out a lot of detail but tried to convey nobody seems to be in hurry except me and my cancer.
Thanks very much
Hi. I am not medically trained so can't give any medical advice relating to your case. I know when I was going through diagnosis, I was told the bladder removal surgery would only go ahead if the cancer was contained within the pelvic area. Obviously every case is different and it depends on individual circumstances, type of bladder cancer etc. I also know immunotherapy is used where the cancer is incurable. However, I would definitely make a list of questions and ask for a meeting with your medical team to discuss so you have better idea of what to expect in each scenario and the options available to you. I know it is human nature to think ahead. I know it's hard but try and take things step by step. It could be the lung nodule biopsy is negative and certain things don't need to be considered. Wishing for you the best outcome possible. Let us know how you go. Laura, Moderator, BladderCancer.net 
- Welcome to this group of very supportive and helpful survivors and caregivers. I am not medically trained but have a couple suggestions. First of all I would keep detailed notes on everything that is happening and have copies of offices notes and tests, I would consider a second opinion as your stage seems to have progressed quickly or at least possibly from contained to the bladder to otherwise. . Third - reach out on here to Brittney Tellekamp and read her articles as she was diagnosed at a high grade and found what worked for her. Here are a couple: https://bladdercancer.net/living/visit-to-the-emergency-room?fbclid
https://bladdercancer.net/living/surviving-metastatic-diagnosis?fbclid
Keep us updated on how you are doing and I hope that you have good news from tests and an move forward with treatment options. Linda Urbanski (moderator, Bladdercancer.net team member)
