What we learned today...

We had a long meeting with the radiation oncologist, who spent more time with us than I think he intended to but didn't rush us along. Unfortunately, the day I had my MRIs done was the day the imaging center changed computer systems, and they are having some difficulties getting the films onto CD, which is what MSKCC uses to get them into the main computer system so all the doctors have access to them. Therefore, this doctor hasn't seen the "real" films either, only fuzzy copies of them.

Basically, he told us I have multiple mets in my skull -- at least two, but he's unsure exactly how many or where they are since he hasn't seen the films. The one of most concern is the one in the clivus, which is located about in the center of my head. According to the radiology report, the met in that bone is spreading forward into the frontal bone in the area probably behind my nose somewhere. If you look at the skull diagram from my recent post, you'll see that the frontal bone starts at the forehead and extends all the way down the face behind your nose and wraps around under your cheeks. The clivus is back in there where the frontal bone meets.

Because of these multiple mets (plus the likely one in my ilium) and the fact that none of them are causing me pain, his inclination is to watch and wait (which is what Dr. Healey recommended). He will recommend to Dr. K that chemo be resumed but that she might try a different medication. I'm not sure why she would do that since bone mets cannot be treated with chemo, but I'll discuss that with her when she calls me, likely tomorrow.

I've been reading about biphosphonates, which are medications sometimes given in addition to chemo to prevent or stabilize bone mets. The most commonly known one in LMS circles is Zometa, but the Sally Fields-advertised Boniva is a biophosponate. It works to prevent the destruction of bone, and cancer cells definitely destroy bone. The rare but serious side effect to these biphosponates is the deterioration of the jaw bone. Why she didn't suggest this when she started me on chemo I simply do not know. Another question to ask.

So, no surgery because there are too many bone mets. No radiation because there are too many bone mets. We'll find out tomorrow about chemo suggestions, and then I'll have to confirm that MRIs will be done on my skull every two to three months following a round of chemo. If and when there is a change in one of the mets or I begin having problems, we will revisit the surgery or radiation options.

For those of you who are familiar with my annoying, constant cough, it's possible that the met in the clivus is affecting my sinus and causing the post-nasal drip, which makes me cough. The radiation oncologist suggested that I see the ENT person at MSKCC to see if there is any problem within the sinus. I'll ask Dr. K about that referral.

It is our humble opinion that both Dr. Healey and Dr. K definitely dropped the ball here -- although I must take some of the blame. Two areas in which I have mets are places I mentioned as tender or sore, and I've been complaining about this post-nasal drip/cough since last October. I should have pushed for tests, but as cancer specialists at what is supposed to be the best cancer center in the world, you would think they would have been vigilant for bone mets since I was a rare bone primary. I should have had a bone scan no longer than a year out from my last one, which would have put it at November 2007 -- about a month after my scalp became tender. At that point, we may have only one or two to deal with and therefore had more options.

This experience really leads me to question any doctor, even the so-called "experts." Don't let what has happened here happen to you: Question everything and speak up when you think something is slipping through the cracks. I wish I had.

I'll be back after my discussion about chemo with Dr. K.