The Diagnosis

The Diagnosis

My condition is rare, possibly only one in a million people. It has been seen often enough to be characterized, but only by specialists. In the operating room, the team quickly classified the disease as appendiceal cancer, and gave it a low-grade. Grading tumors generally refers to morphology (how they look compared to normal cells) and may not be indicative of how aggressive the cancer is growing. A number of specimens were taken and forwarded to Johns Hopkins.

I continued to recover in the hospital while we waited for the pathology report. It would take 3-5 days, and on my final day of discharge it came back- along with the CT scan. Both James and I were too fragile to take a look at it though and wanted to focus on recovery. It is also a matter for specialists to interpret the results, so again Georg came to the front to read the reports to me and help me understand what they meant.

First came the difficult news, instead of low-grade, it was high-grade appendiceal mucinous neoplasm. Mucine is a gelatinous secretion. Although the appendix had not ruptured, the right ovary had split. The new grading would dramatically change the approach to treatment. There was cancer in the right-ovary and fallopian tube, the appendix and the rectal implant. The pathology report listed the left ovary and fallopian tube as “involved” by the cancer, so clearly the cancer had metastasized.

Now came a bit better news- even though the cancer had advanced, these tumors (and entire organs) had been removed during the surgery using a procedure called “de-bulking.” There was only one visible tumor remaining, on the peritoneum by the diaphragm, that was approximately 1cm X 3cm X 1mm. The new CT- scan did not detect cancer anywhere else- the lungs and liver were clear. At this point the cancer is likely localized to the peritoneal cavity.

Although the diagnosis was hard to take emotionally, at least we now had a better understanding of the disease and could plan a course of action. It was time to get a number of opinions and options from my different teams: Georg and cancer specialist in Oslo, the team at my hospital, and an outside opinion from Moore’s Cancer Center (one of the few centers that specializes in appendiceal cancer and happens to be local at UCSD in La Jolla).

I would spend my time focusing on recovery while not trying to worry too much. No matter which treatment option was to be chosen, I needed to get back into good shape.

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