Radical Nephrectomy in Oct 2024 - Unsure of Next Steps

Courage33068

Hello, first off, let me start out by saying that I am grateful for this community and the courage you all display.

I am hoping for some guidance on my cancer journey to better help me advocate for myself.

In October 2024, I went to the emergency room after a month of seeing small traces of urine in my blood. I was referred to an oncologist who told me it was cancer and I was then referred to a urologist who performed a radical nephrectomy to remove my entire left kidney. The result came back as Chromophobe renal cell carcinoma (chRCC) with no spread to the the nearby lymph. I had a CT scan of my chest and abdomen performed after the surgery and they discovered 3 small nodules in my lungs. I was referred to oncology. The oncologist recommended no further treatment, except to follow up in 6 months with another scan.

In January 2025, blood returned to my urine. I went back to urology who told me it was nothing connected to the cancer surgery, but was probably my prostate. I was given finasteride and had a severe allergic reaction. They tried another prostate med, but the blood still did not stop. This cycle continued for the next several months with me going from urology, primary care, and the emergency room with no clear answers on why I still had blood in my urine.  

To make a long story short, in March 2025, I found a new urologist who performed 2 follow up surgeries to my nephrectomy to remove the left ureter, which I guess had been left in after my first surgery. However, when they performed a biopsy on this, they found invasive Clear Cell Renal Cell Carcinoma (ccRCC) with lymphovascular invasion identified.

I had a PET scan performed in April 2025 after the surgery and the nodules in my lungs have grown since the scan in January.

I brought all of this to a new oncologist at a cancer center (Hackensack in New Jersey) and reported being unclear on what type of cancer I have since there were 2 surgeries that revealed a different type of cancer. He recommended I return back to the original oncologist who recommended no treatment, but I begged him to keep me since he had all the information now. He agreed to do so but stated it would take him some time to get the pathology reports and scans to determine exactly what type of cancer I have.

At this point, I am very scared because so much time has transpired since my surgery and I now have a report showing clear cell with lymphovascular invasion.

Any guidance on how to proceed with my doctors would be much appreciated.