Wrestling With a Diagnosis That You Never Wanted

Before 2016, Mark and I had never heard of Neuroendocrine Tumors (NET) or NET cancer. Not surprising, as there are a lot of cancers out there.

For us, the rush to the ER and emergency surgery to alleviate the blockage in the small intestine was just the beginning of a days-long wait to confirm the diagnosis of Neuroendocrine Tumors (NET cancer).

Post-surgery, the two masses removed from the small intestine and mesentery, as well as samples from nearby lymph nodes, were sent to a pathology lab for analysis. The surgeon who performed the operation was a surgical oncologist, and based on her experience, she told me it was cancer right after the surgery. But as a loved one in shock, I needed hard facts — a lab report or some other official-looking document to confirm the news. Thus began THE WAIT.

The mind is a funny thing. When faced with unwanted information, the diagnosis from an experienced specialist — which, under normal circumstances, would be unquestioned — somehow didn’t seem to be enough. Denial and hope for an alternative took over my mind and I refused to accept the reality of cancer until I saw the official pathology report. Unfortunately, pathologists require time — time to do their analyses and time to compile the report. The four-day wait ended up feeling like an eternity.

From a caregiver’s perspective, the wait was even more difficult because I didn’t know what to say to Mark. Even though he was heavily medicated while recovering from the surgery, the possibility of cancer caused bouts of anxiety and uncontrolled emotions. It was so difficult to see his body in recovery but his mind tied up trying to process the uncertainty of the situation and the possibility of a very serious diagnosis. The pathology results became a focal point. He began to fixate on when those results would come, and his emotional state deteriorated.

But as a loved one in shock, I needed hard facts — a lab report or some other official-looking document to confirm the news.
Thus began THE WAIT.

Mark was still in the hospital when I finally received a call from the doctor. She confirmed the diagnosis of NET cancer. The primary tumor was in the small intestine with metastases to the mesentery and lymph nodes. There was now no escape from facing reality.

Given the emotional challenges Mark faced during the prior few days, the doctor and I came up with a strategy to convey the news. She brought in a medical oncologist who presented the results and the diagnosis in context, explaining what the results meant; the extent of disease; and next steps. I truly appreciated the informative yet positive way in which the oncologist communicated to us. It made a difference.

Receiving a confirmed diagnosis was just the beginning of the journey, but it was an important step for us. I think the biggest lesson I learned through this experience was how important it is to actively communicate with the medical team and advocate for your loved one, to make sure that difficult news like a medical diagnosis is communicated in the most compassionate way possible.

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