When Cancer Goes Undetected

It was news that made you shake your head in disbelief.

Young ESPN reporter loses his life on his birthday, which happened to also be Christmas Eve, because of both pneumonia and hemophagocytic lymphohistiocytosis (HLH). According to his Instagram, he had been fighting the virus since the beginning of December and was gone 25 days later.

The media reported his passing in disbelief. How could a healthy, young man die of pneumonia and HLH? It was hard to comprehend. The news crossed my feed around the holidays, and I gave it a sad glancing. Young people dying is tragic. It wasn't until weeks later that the truth behind his sudden passing shook me to the core.

According to another social post by Aschoff's fiancé, Katy Berteau, they discovered that he actually had stage IV non-Hodgkin's lymphoma that went undetected and could have triggered the HLH which ultimately lead to his death. Once again, the media reported this latest development and it went viral.

I shared a link to the story with my husband without any comments; no words needed to be spoken as he understands my fear.

We discovered my stage 4 non-Hodgkin's lymphoma (NHL) by accident. I was asymptomatic, or at least I didn't recognize that the fatigue and night sweats weren't because I had three children under the age of nine, worked 180 hours a month, and was in perimenopause. There was no reason for me to think much about the fatigue and night sweats since I had recently done blood work, and my blood work was completely normal. The decision to have bariatric surgery essentially saved my life; technicians discovered spots on my liver during my first round of tests leading up to bariatric surgery and that sent me down the cancer rabbit hole.

I remember sitting with my hematology-oncologist at Shaare Tzedek Medical Center here in Jerusalem as he diagnosed me with stage 4 diffuse large b-cell lymphoma, an extremely aggressive form of NHL. I looked at my blood test results in front of me, there wasn't one red mark to indicate that something was off. There were no tumor markers, no elevation in my liver functions, no increase in platelets or decrease in white blood cells.

"I have stage four blood cancer, and my blood work is completely normal. How is that possible?" I remember asking. I never received a satisfactory response. My bone marrow biopsy, as was Edward Aschoff's, was free of cancer. My non-Hodgkin’s lymphoma diagnosis was only confirmed through a liver biopsy. According to my PET CT results, the cancer was already in my liver, spleen and bones before I started treatment.

In survivorship, we have no choice but to rely on blood tests to monitor for possible cancer reoccurrence. But every three months, when I look at my results, I feel no internal relief.

I can't rely on blood work since blood work failed to detect my stage four blood cancer. Just like it failed to detect Edward Aschoff's. My hope is that one day soon, scientists and doctors will come up with a better form of detecting blood cancer beyond blood work.

Lives depend on it.