Second Opinion, Third Opinion

It might seem strange that we've made it this far into treatment without ever seeking a second opinion.  I guess I did have an initial opinion when I was first diagnosed in Australia but I would hardly count that.  No, the entire time we have relied exclusively on the viewpoints of my doctors at UCSF.  (Along with our own research and desires of course.)  I feel very fortunate since it is one of the finest hospitals in the country for treating brain cancer.  On top of that, whenever I see my doctor she presents my case to the "tumor board" made up of all the neuro-oncologists, neurosurgeons, radiation oncologists - everyone in the department with potential insights - so that I benefit from their views as well.  These folks might walk right by me on the street on the street but if I happened to be holding my brain MRI - they'd say,"Hey, I know you....

The point is, I don't feel underserved by UCSF.  I feel confident in the care I've received and the treatment plan that I've pursued.  Still, we've come to another crossroads in my treatment.  I'm off chemotherapy (I can go back on if there is a turn for the worse) and I still would rather defer whole brain radiation as long as possible - so what to do?

First, we stayed close to home and drove down to Palo Alto.  I have to admit, I felt the difference between a public and private research hospital immediately.  Stanford has a gorgeous new hospital which is extremely well designed. The intake was smooth and human.  The physical space was modern and airy.  We had an excellent conversation with the fellow before consulting with the doctor.  It think it can be a common experience that the side effects from medications can be as bad or worse than the actual cancer. This fact can be easily overlooked by one's primary oncologist.  Their goal is to keep the cancer at bay and as long as that is happening, you are considered a success even if your day might be ruled by side effects.  We came away with some ideas on how to more effectively taper off of steroids and some suggestions for an anti-seizure medications with potentially fewer side effects.  It definitely didn't lead to any treatment breakthroughs but it was helpful and worthwhile.

The next stop was a bit more of a journey - we went down to the MD Anderson Cancer Center in Houston.  MD Anderson has the reputation for being especially rigorous for second opinions, they really look hard at all options, and they sponsor many clinical trials.

The Cancer Center itself is massive - Texas sized I guess.  There is large neighborhood near Rice University labeled the Texas Medical Center which feels like it has acres of hospitals - ten blocks in every direction.  MD Anderson has maybe eight or nine 20 story buildings in this area.  One has the feeling of visiting a medical industrial complex.  There is certainly logic behind co-locating so many research hospitals nearby but there is an inevitable feeling of a patient being a tiny cog in a massive machine.

The hardest part proved to be finding the right office in the sea of MD Anderson buildings.  Checking-in, we were greeted by a half-proud, half-smug, "Welcome to MD Anderson! (subtext: now you are in the big leagues)  Maybe this is a relief if you have just come from a rural hospital with few resources but it came off as kind of insulting considering that I'm already being treated at a top cancer center.

I was examined by a fellow again but I them spent nearly an hour with the deputy department chair of neuro-oncology.  Unfortunately, he didn't identify a single clinical trial that would make sense for me at this point.  We peppered him with every question we could think of.  After a about twenty minutes of this, he finally said, "These are really good questions."  Yeah, no kidding, I'm pretty motivated to find answers such as they are.

We did come away with two very positive pieces on information.  The first was that the doctor felt that he could clearly see response when comparing my first scan to the one I had in December.  While he told us this confidently during the consultation, somehow it did not make it into his clinical report.  I think the change is just subtle enough, visible but not easily measured, to make any doctor uncomfortable declaring improvement.  Still, we took it for what it was worth.  We discussed the advantages and disadvantages of stopping or remaining on the chemotherapy.  While he said he might recommend staying on the chemo for an additional 12 months (not to exceed 24 total), he also acknowledged the sense of stopping the chemo before it becomes ineffective.  So, if there is a change, we can return to chemo rather than jump immediately to radiation.

The second piece of big news was that he had personally seen patients in his practice with similar tumors to mine, inoperable and extensive,  who have lived 20 years and are still going.  This is no guarantee of course, all tumors are unique blah blah blah...but just hearing this was worth the trip Texas alone.  This is one context in which I will do everything I can to be in the 1% of the 1%.

Both opinions left us feeling comfortable with our course of treatment and focused on supporting my overall health as much as possible.