Notes from visit with Dr. Mark Bilsky
Memorial Sloan-Kettering
16 Sept 2004

	The meeting was lengthy, fast paced and detailed Šand I really 
took no notes!  I hope the below covers all the bases.

	While Bilsky and Mem-SK do numerous chordomas, mine, being
In C5/6 and being limited to one side, is somewhat unusual.  
Nonetheless, Bilsky has indeed done one surgery very similar to mine in 
the recent past.  He seemed very comfortable with treating my 
situation.

	He thought the CT scans were of quite good quality, but noted 
that MRIs would be necessary to better assess the neurological and 
arterial aspects of the neck and head.  He gave me scripts/orders for 
these, which I have given to Meadıs office to process.  Of particular 
concern is the soundness of the two vertebral arteries which service 
the brain, one of which is encapsulated: are they both functional? Are 
their cross-connects functional?

	The question of X-ray v. protons for follow-up has, to been my 
mind, been closed.  Bilsky recommended protons, supporting the 
recommendations of Gotto, Larson, Mead and others.  As expected, 
Bilsky felt one really only gets one chance at radiation therapy, in that 
the dosage is so high.  This puts a premium on getting the most of the 
tumor out in the surgery as possible.  Recurrence of the tumor in the 
out years can be treated with follow-up surgery, but no further 
radiation would likely be possible.  

	We discussed his proposed procedure at length.  This would be in 
two phases, which could be as close together in time as a few hours or 
as far apart as a few days, depending on lots of factors.
	The first step is done from the back of the neck (posterior), and 
involves stabilizing the vertebrae that have been eroded by the tumor, 
as well as "stripping" the C5/6 nerves of the tumor (this was 
described with about as much gravitas as an electrician stripping the 
insulation off a copper house wire!).  The two (or three) affected 
vertebrae would have their structural bodies removed (yikes!) and 
replaced by metallic bodies (usually titanium) and a support that gets 
screwed into the solid (patent) vertebral bodies above and below the 
affected area.  The strut could be metallic or could be from my tibia. 
	The second step in from the front (anterior).  A large incision 
("door") is made, top-of-neck, to sternum, to shoulder, presumably by 
a thoracic surgeon.  Then a neck surgeon (Dr. Boland was mentioned) 
and Bilsky work to remove "all" of the anterior portion of the growth.
	The surgery would result in more limited ROM of my neck: bowing 
and stretching (motion in the vertical plane, or pitch) would be most 
affected, with rotation (roll) least affected and lateral motion (ear to 
shoulder or yaw) perhaps affected.  
	Extreme caution would be used concerning keeping both vertebral 
arteries sound (patent) if at all possible to minimize risk of stroke.  
MRI-A has been ordered and balloon angiograms would be done before 
the initial phase and likely between phases.
We did not at this point try to pin down what percentage of the 
tumor he (and Boland) could remove and what were the neurological 
risk factors of the surgery (loss of oxygen to nerves, cutting of nerve 
roots, etc.)

	The other surgical option discussed would better be done at 
Johns Hopkins by Dr. Zya Gokaslan, who was also recommended by 
Gotto and another physician.  
This is more "radical" and removes the tumor as a 
"block"; i.e., one cuts around the edges of the tumor removing all 
tissue that is is contact with the tumor, giving tumor-free edges 
(negative margins).  The up sides of this is that one relies less on the 
radiation therapy follow-up to kill tumor cells and it better prevents 
metathesis; the down side is that it means cutting the encapsulated 
verves from C5/6 and removing part of (at least temporarily) the 
right vertebral artery.
	Bilsky will wait for the MRI and MRI-A and then consult with 
Gokaslan.  If Gokaslan thinks the situation is one he would like to 
explore, Bilsky feels a trip to Baltimore would be worth my while.
	Two further comments on his procedure by Bilsky: (i) given the 
closeness to the spinal cord, he doubts such a "block" procedure could 
guarantee negative margins; (ii) if the lesions in my lungs are chordoma 
metatheses, the rationale for such a block removal is largely removed.  
[When asked about these pulmonary lesions, Bilsky said he did not see 
them.  I guess I never pressed him as to whether this meant he looked 
at the scans and did not see what the radiologist saw or whether he 
had not looked at the scan.]

	Bilsky thought my situation was stable and did not see any need 
to rush, feeling it better to assemble as much information as possible 
and put together the best possible plan and team.

	Full recovery from the surgery would take perhaps several 
months.