My cancer was found on January 2023 during an emergency surgery for acute peritonitis, excessive scar tissue and severe pain. The CT scan showed ascites (small amount) and other organs with inflammation. I Had 6 major abdominal surgeries prior to this. Two nodules were found size 0.4 and 0.6 cm on the mesentery. Pathology revealed poorly differentiated aggressive gynecological cancer. My CA125 was 250. Before my first chemo My CA125 dropped to 40.0 and at chemo #2 it was 4.5. My CA125 since April 2023 has been at 4.0 except when Covid caused a false positive with a CA125 of 35. Three weeks after Covid it was back at 4.0 or 4.5.
I have had 7 CT scans and 2 PET/CT scans. No tumor or mass has ever been found. I was diagnosed with Primary Peritoneal Cancer. My 8th abdominal surgery was my debulking and staging surgery. There was no evidence of disease found. However I was told I was stage 3C.
I have questioned my oncologist and I can’t get a clear understanding of how I can be stage 3C. I always feel on the defensive when I ask about my cancer. The only cancer ever seen was the 2 tiny nodules that were sent to pathology. I don’t know how this could be. Primary Peritoneal Cancer is very aggressive and has a poor prognostic life expectancy I have been treated for this cancer for 2 years and 2 months. My insurance company has been billed close to $1,000,000 (yes a million). I sometimes feel like I am a cash cow to my Cancer Clinic. My doctor said my cancer was mysterious. All of my records have a diagnosis of Primary Peritoneal Cancer and Cancer of Unknown Primary. It seems that PPC always has CUP added to it according to medical reports googled.
I was told in August 2024 that I am in remission; cancer free. I am taking Lynparza and Avistan. Every month my cancer maintenance cost $57,000. With no cancer found my Lynparza and Avistan was changed from 1 to 2 years 2 months ago when I was so excited that I was almost done with treatment. The side effects are horrible and I don’t want to have this treatment any more. By the time my maintenance treatment ends I will have been treated for my curious case of Primary Peritoneal Cancer for 3 years. I’m 69 years old and I hope I outlast this treatment so I can be side effect free and living a better life.
