Those of us in cancerland know that cancer isn’t always black or white, and the line separating cancer and cancer-free isn’t always thick and dark. We know that the word remission is a bit taboo, so the goal of this post is to educate the cancer muggles on the gray area where this disease can sometimes rest.
After being diagnosed with a pancreatic neuroendocrine tumor in September 2014, I underwent surgeries and treatments until my body showed no evidence of disease (a favorite term among oncologists). I went along for a year, crossing my fingers the illness would leave my life, but also knowing the statistics behind this cancer and that it would probably make an appearance again.
During those months, I was free of any signs of disease, when a questionable spot popped up in my liver. Radiologists debated whether it was contrast build up, a new tumor, but even the tumor board (an oversight committee) couldn’t come up with a definitive conclusion. My (usually very sensitive) tumor marker remained normal, so they threw me into a dreaded strategy of, “watch and wait.”
I asked my doctor, “So, do I have cancer?” and in a nutshell, he said, “I don’t know. Maybe. Maybe not. Go live your life and come back in a few months. We’ll scan you again.”
Easier said than done.
Three of months later, I was thrilled when the radiology report concluded the previous spot was gone. “Yup, it was contrast build up. It’s resolved, and everything looks good. Come back in a few months.”
And so I did, but this time, one of my symptoms had begun to reappearing and my blood tumor marker was crawling towards abnormal range. To my surprise, the scans were clear. “Come back in a few months.”
Eventually the uncertainty and anxiety became too much to bare. I decided to reach out to a specialist, who told me his hospital had a new, more precise diagnostic machine that would hopefully help us find the source of the symptoms and blood results. The scan uncovered microscopic tumors too small to show up on an MRI or CT. The news was bittersweet. Bad news: I had cancer. Good news: I now had a definitive answer and could move forward with a new treatment plan, which I executed faithfully over the next year.
I tolerated the new therapy well and it barely impacted my life. Those tiny tumors got even tinier and the blood tumor marker became normal again. At the end of the treatment, I was advised to have a precise scan again, so doctors could see the before and after. However, when I did, the radiology report indicated all the tumors were gone, except one that had progressed. My oncologist and I were both thoroughly confused and sent the images to the specialist for another opinion. His interpretation completely opposed that of radiology report – the disease had indeed shrunk and I was classified as a partial response. “Come back in a few months.”
Ever a faithful patient, I did and was happy to have all doctors agree that the disease continued to retreat. “Come back in six months.”
Navigating opposing interpretations of scans, watch-and-wait scenarios and living life in three-to-six-month increments are a few examples of the uncertainties cancer patients experience. It’s important for cancer muggles to know the true complexity of this disease and that many of us who have walked down cancer street are not always strolling on one side of the boulevard or the other. Sometimes we tread, with caution, down the middle of the road, unsure if we should be on the left or right side.