“CT scan of the abdomen shows the patient to have multiple bilateral, too numerous to count, liver lesions consistent with widespread liver metastases.”
My jaw dropped as I read the report. My vision blurred. The world before my eyes spun and came to a standstill. Reeling, I fumbled for a bench outside near a sign which proclaimed, “There is Always Hope.”
I had woken up feeling laid-back, looking forward to the father-daughter school dance that evening.
I had a CT-scan the day before, the final requirement to enter my planned immunotherapy clinical trial, but didn’t worry about it. My disease — metastatic colon cancer — has been slow growing and predictable for five years.
I learned that my liver had exploded with new tumors. Too many to count. Some quite large. I knew what this meant. A much more aggressive disease in an essential organ – the type of situation that screamed, life-threatening. Near-term life threatening.
My oncologist and I reviewed the images together. My liver looked like Swiss cheese covered in large spots, including a few that were dangerously circling around my biliary duct. If they grew just a bit more and blocked that duct, an emergency stent operation would be needed. If that didn’t work … Game over.
All at once, I had gone from excited newcomer to a clinical trial of an exciting immunotherapy, to a possible game-over.
Welcome to the crazy rollercoaster world of Stage IV cancer. A world where you are constantly being scanned, each new scan a game of Russian roulette. This is why “scanxiety” is very real. My entire life changed with this single scan.
Even before my oncologist spoke, I had already come to the same conclusion: Immunotherapies are slow, chemotherapy is fast. Stop the clinical trial. Get on chemotherapy that very day.
I had no time to lose.
I was disappointed by the clinical trial being abruptly postponed until my liver is under control. Yet even more, I felt determined ready to fight for my life by any means necessary.
As a Stage IV patient you learn to react to new data on a dime. I was in that chemotherapy infusion room to save my life, get my liver ready for a future clinical trial and fight on.
Further battle hardened and ready to take that homerun swing.
Yes, I did make it to that father-daughter dance. We had a great time.
There is always hope.
2016 Colondar 2.0 featured survivor Dr. Tom Marsilje (known on Colon Talk as DK37) is a 20-year oncology drug discovery scientist with “currently incurable” stage IV colon cancer. He also writes a personal blog on life at the intersection of being both a cancer patient and researcher “Adventures in Living Terminally Optimistic,” a science column for Fight Colorectal Cancer “The Currently Incurable Scientist”, and posts science and advocacy updates to Twitter@CurrentIncurSci. This guest column appears on Diagnosis: Cancer through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for over a million patients and caregivers.
This article originally published on Philly.com.