The collective experiences associated with a brain tumor have taught me several lessons. Please review this brief essay concerning good decisions and not so good decisions that I have made.
Finding Dr. Right
The prognosis for a person diagnosed with a gbm is bad enough without a doctor compounding a patient's distress by making statements similar to "come to grips with the reality that the tumor will return and take your life. No one survives a Grade 4 brain tumor." Lesson learned: do not be afraid to switch to another doctor with superior bedside manners.
2nd Opinions
The immediate follow up treatment for a gbm after surgery is the universally accepted conformal radiation and concurrent Temodar. After this, however, opinions diverge and vary as a function of the doctor and medical facility. Kathy and I sought 2nd and 3rd opinions by traveling to Duke, MD Anderson and UT Southwestern to understand their offerings and recommendations. Survivors in the 2-5 year range were also consulted (4th opinions) to arrive at a path forward. And all of this was bathed in prayer. Lesson learned: be proactive, take charge of your own care and make your own decisions, whenever time and opportunity permit.
Being Sensitive
My tumor was resected in a three hour procedure in February 2004. The operative report is gripping and I appreciate neurosurgeons such as Dr. S. Sam Finn for their gifts and for being the Lord's hands to extend my life. The removed tissue was somehow encapsulated in a wax block of sorts and slices were sent to a number of pathology labs for analysis. The tumor was reviewed as being a grade 4 gbm, over expressing EGFR and not demonstrating the VEGF growth factor. This is vital information, but it would have also been helpful to know in advance the vulnerability of the tumor to various chemo agents, such as Temodar, Carboplatin, CPT-11 and CCNU, so as to hit the remnants following radiation and concurrent Temodar with the chemo / cocktail that would be the most effective. Lesson learned: encourage, even require your medial team to keep the tumor alive and to perform a series of sensitivity tests.
MRI Resolution
When the tumor's recurrence was detected in June 2007, it was so small that its actual return (January 2007) escaped notice. Because of this, I thought it prudent to perform subsequent MRIs using smaller "slices" and smaller "skips" than previously employed; that is, a higher resolution procedure. The imaging facility that I had been using for more than three years was unable to perform these high resolution scans which required high power magnetic field MRI machine.
So I had the scan accomplished at another facility. Doing this ended up being a mistake, because the radiologists at this new facility, unfamiliar with my MRI history and unable to meet with me to review the film from previous scans that I had brought with me, totally missed the tumor. Their report said "no interval increase," but Kathy and I already knew that a measure of the tumor remained, because we had already reviewed the film, knowing exactly where to look. Considering the distance I had to travel to reach the "new" facility and the much higher copay, the decision to stray off the path for this MRI was a big mistake. Lesson learned: stick with your legacy methods and systems that have a proven track record.
