New bladder cancer diagnosis

Grace119 Member Posts: 1 Member

I just found on Tuesday that I have low grade bladder cancer. I went into the cysto thinking cancer wasn’t in the picture because an earlier urine test was negative. Only to find out it was negative only for high grade bladder cancer. Someone is supposed to call tomorrow with a surgery date. Needless to say I am very scared and a little numb. On the notes from the cysto it says it is a papillary tumor. Has anyone had this diagnosis before?


  • barehead
    barehead Member Posts: 35 Member

    Grace, sorry that you are having to deal with this. A cancer diagnosis is a lot to absorb. Your reaction is quite normal.

    The very first thing I would recommend is to visit the web site BCAN.ORG. It is hosted by the Bladder Cancer Advocacy Network, and contains fantastic curated medical and other information for understanding and dealing with bladder cancer. It was a key resource to get me through my journey.

    As you discovered, the urine test is only about 70% accurate. The cysto is a good way to view the bladder, harvest any unusual tissues for biopsy, and then get the pathology report on the biopsy. If the biopsy report is positive, the typical next step is to have a TURBT, which is an outpatient procedure under sedation where the urologist can remove any tumors. You will likely go home with a Foley catheter remaining in your bladder. After a few days the catheter can typically be removed at home or in the office. For me, the catheter was the most uncomfortable part. Not really pain, but not comfortable. Tissue samples from the TURBT are sent to a lab, and the pathology report on these is important. Keep a copy of them and pay particular attention to the Stage and Grade. These results will be used to guide any further treatment. Those further treatments could typically include immunotherapy (e.g. BCG), chemotherapy instilled in the bladder, systemic chemo, or a partial or complete bladder removal.

    Yes, I had experience with a papillary tumor and more. I had two occurrences of bladder cancer, 16 years apart. The first one was Stage 1, high grade, and involved papillary tumors. Two courses of BCG immunotherapy, the second with Interferon included, did the trick. Every year afterward I went in for my cystoscopy, and was clear.....until the last one. My BCG treatment was completed, and then the Covid lockdown started, and I was unable to get another TURBT locally since all surgeries had been shut down. I found out that I could get a procedure at an NCI hospital two hours away (Moffitt) and I jumped on it. They found that the tumors were aggressively moving toward my kidneys. The quickest best solution (highest survival rate) was bladder removal. I had that done, and I have been cancer free for three years in October.

    Do not presume that my experience is typical. It was somewhat unique. The good news is that you are in front of the diagnosis and treatment process. Stay positive. Learn about the disease so that you can ask good questions of your providers and participate in treatment decisions. Join an active treatment support group at your provider facility where you can share your situation and concerns. And keep in mind that there is life after cancer. I have many survivor friends enjoying their lives and family.

    Also, I help mentor new bladder cancer patients for three organizations, including BCAN. We are survivors that do not provide medical advice, but we do try to take the mystery out of the bladder cancer journey. I would be happy to answer further questions that you may have. You can use the CSN messaging capability (that little envelope icon in the upper right screen area) to send me a private message.