My Scans are clear but….

By Arlynn Krauss, Esq

My Scan is Clear But My Clinical Signs Are Declining.

WARNING: If you are desiring to see only positive information regarding this subject matter, please do not read below. This is a realistic summary of a common and confusing situation.  If you prefer to hold hope, which is completely understandable, do not read further. The situation described above is commonly reported. And many patients and their caregivers are devastated by the apparent conflict between the clean MRI and the declining clinical signs.   Let’s take a look at what causes this phenomenon. Many of us hear first after the initial surgery for GBM that a ‘complete resection’ was obtained by the surgeon, meaning that all the tumor was removed.   This leads the patient and family to gleefully cheer that all the cancer is gone. However, the patient must understand that all the cancer is never gone.    This is due to the fact that margins are not obtainable in brain surgery, for this would involve eliminating brain tissue.  It is familiar to hear in other types of surgeries that the ‘margins are clean, but in GBM this is an impossibility.   The margins are never clean.  This is devastating news to families holding out hope.  My husband and I  went through many euphoric moments due to ‘complete resections and ‘stable MRI’s. We were no different than thousands of hopeful GBM families.

Further,  although an MRI may show ‘stability’ this does not mean the cancer is gone, for the reasons outlined above, and also for further reasons outlined below, cancer from GBM spreads like ‘glitter’ throughout the brain.

We donated my husband’s brain and spinal cord to the Tumor Bank at Northwestern Memorial Hospital.  I reviewed the slides of my husband’s brain with Dr. Craig Horbinski, a noted neuropathologist in his field.  Dr. Horbinski demonstrated in exquisite detail the ‘glitter’ of cancer cells that had spread through the brain, glitter that would not be picked up on an MRI.  The glitter specs are small debilitating cancer cells spreading throughout the brain, causing clinical symptoms but not demonstrated on the MRI.

My Scan is Clear But My Clinical Signs Are Declining.

Due to these phenomena, our neurosurgeon, Dr. Karan Dixit of Northwestern Memorial Hospital in Chicago, always viewed clinical signs as more important than the MRI.   This must be stressed.  Clinical signs trump MRI results. If you family member has bad clinical signs but a great MRI, trust the clinical signs.  In fact,in view of the fact that the MRI’s caused my husband great physical pain in his back, Dr. Dixit decided to dispense with further MRI’s.   My husband had no MRI’s for months before his death. Our neurooncologist inquired after every MRI, “more important how are you feeling”.  This should be the inquiry after every MRI….” how are you feeling”….that will tell the true story.

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