"Ask your Doctor", "Go to a major medical center for advice", "Go to a major medical center for a second opinion"… these are the types of guidance given to patients.
These are good pieces of advice – I recommend them to fellow patients all the time – but there is a giant elephant in the cancer room's corner which is not often openly discussed: What happens when two major medical center teams give completely opposite medical advice? What happens when this occurs in the life and death world of Stage IV Cancer?
Talk about pressure – as if having Stage IV cancer wasn't high pressure enough…
I mentioned my highly experimental personalized immunotherapy research in the column "In Seconds, this Cancer Scientist Became a Survivor". A key component to this project is targeting mutations which are specific to my tumors and consistent over time.
Getting this information requires surgical biopsies. All surgical procedures carry risks. The exact location of the tumors has a significant impact on the level of risk – requiring a careful assessment by a fully qualified interventional radiologist.
Looking at my CT-scans last spring, one major medical center team initially said no – a biopsy was too risky. A second major medical center team subsequently said yes – the risk was acceptable. Wondering what I should do plagued my mind…
Like most Stage IV patients, I am not a M.D., yet I was put in a position to make a medical decision. How would I decide? The deciding point for me was to look at my current #1 goal relative to risk as assessed by a qualified medical team. My current #1 goal is my research project because in theory it could be curative. Because of that, the decision point became obvious to me.
Every patient will have a different current #1 goal. But similar to me, they are often acting as head coach and making final medical decisions between opposing pieces of advice. This is an under-recognized and stressful aspect of Stage IV life. Unfortunately there are a lot of gray areas in the treatment of Stage IV disease.
As my decision flowed down through my consciousness, reinforcing points quickly filled in behind it to cement the decision in my mind including: "What if I chose not to do the biopsy and the research project fails?"
Dr. Tom Marsilje 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 800,000 patients and caregivers.