My second day of knowing I had cancer was a whirlwind. I had my first oncology appointment where I met the NP that works with my oncologist who explained the scans, biopsies and tests they would order. We would get a sample of the largest mass on my left lung and send that in for biopsy as well as genetic sequencing of the tumor. They also ordered genetic testing to determine if I had any inherited mutations (like BRCA) that might have caused this, and might be used for therapy. With widespread disease surgery is not an option, so chemotherapy or a clinical trial were the only options open to me. With my high CA 19-9 it was almost certain that the cancer had started in my GI tract, but since there were no tumors apparent there on the CT we needed to find the primary tumor.
After the appointment all of the scheduling and tests began, starting with a PET the next day. A PET uses a radioactive tracer to see the metabolic activity of the cancer, compared to the normal baseline for any given part of the body. That report was even more difficult to read than the CT report, since it picked up innumerable nodules in my lungs and extensive involvement elsewhere. Shortly after I got my lung tumor biopsied, which they did with live CT imaging. It was not too bad and the nurses were so nice. One told me that her mother had lived 15 years into old age after being diagnosed with pancreatic cancer. Wow, I thought. Whatever it was couldn’t be as bad as pancreatic cancer, right?
When the biopsy came back we learned that I had an adenocarcinoma, and that the surface proteins pointed to the origin being the breast, pancreas or bladder. I met with my oncologist for the first time to discuss it and talk through the process of finding the primary site. I’d had my annual breast MRI the same day as my CT and it was clear, as my mammogram had been 6 months before, so that was ruled out quickly. My urine test came back negative for cancer, which ruled out the bladder. That left the pancreas, which my blood work also pointed to, though CA 19-9 can be elevated in several other types of GI cancers. They then had me do a repeat colonoscopy and an upper endoscopy with ultrasound. The colonoscopy found a large (in fact “giant”) polyp just 2 years after my last colonoscopy, but it was benign. The upper endoscopy found a bit of gastritis, but the ultrasound of the pancreas revealed a 2 cm mass on the head of my pancreas which they biopsied and found to be the same adenocarcinoma. In the meantime the genetic tests all came back. I had no inherited mutations that could be targeted, and my tumor had a pair of mutations that are typical for pancreatic cancer: KRAS G12D and TP53.
I had pancreatic cancer. Now I needed to figure out what, if anything, could be done about it.