The Latest

Yesterday morning we rented a car and left Tulsa for St. Louis.  The roads were all clear once we got on the interstate and the trip went smoothly, which was a blessing.  We got to our appointment with Dr. Jeffery Moley, at the University of Washington - St. Louis, with plenty of time to spare, and were pleased with how things went.  We got lots of questions answered, but have lots to think over now.  Dr. Moley is the top doctor in the country (probably one of the top dr's in the world) who deals with Medullary Carcinoma of the Thyroid.  He's so specialized that this is basically all he sees and treats now.  People come from around the Nation to see him.  He's published all sorts of journal articles and research on this cancer, and wrote the textbook on the surgical procedure to treat it.  Definitely someone we are happy to have found.

He wasn't overly impressed with Scott's case, which was somewhat nice, as every other doctor who we tell about it is surprised and questions the diagnosis and Scott's lack of family history and age, etc.  Again, this is all he sees though, so it's nice to not be a stand-out patient in this situation.  You don't necessarily want to be the case study when it comes to cancer. :)

Our main question in meeting with Dr. Moley was whether he thinks Scott's surgery is something that it's fine if  Dr. Butcher deals with, or if he thinks this is something he or another specialist should tackle.  He handled the question with lots of grace and gave us so much free will in the option we were a little baffled.  We assumed with him being a surgeon he would either be really anti, or really pro one option and tell us what we had to do.  His overall stance on it though was that it would be easier to treat this right the first time around and have someone do it who you know is most likely to get it all in one sweep.  Very logical - our thinking exactly.  He said that since this is all he does, he really thinks he should be the one to do it.  When we raised the question of insurance he named about 3-4 other doctors in the nation who he thought could also handle it if that would work better for us, but strongly suggested it be him or one of them rather than our surgeon at home.

The reasoning behind this is that if, following the surgery, Scott's calcitonin levels remain high, or other symptoms remain, we will have to come to Dr. Moley for treatment.  If he's not the one who did the original surgery it is harder for him to treat Scott following this as he's not sure of what was done, or what lymph nodes exactly were removed, and a repeat surgery may be needed.  Not to say that by Dr. Moley doing Scott's Thyroidectomy and Neck Dissection we're guaranteed only one surgery - it would just be less of a risk.  He also talked about approaching the surgery somewhat differently than Dr. Butcher had.  He would probably take less lymph nodes on the left side (where no cancer has showed up), but also he would transplant Scott's Parathyroid glands, instead of leaving them alone.  He said doing this still saves them so they will operate (they work anywhere in your body apparently - you can transplant them in your arm even and they will still work!), but have less of a chance of developing cancer cells in the future.

To end the whole appointment though Dr. Moley told us that he will help us out wherever we choose to have the surgery, and will offer any advice he can.  So now we have the big decision to make.  Our feeling is that if we're going to deal with this, we better deal with it right the first time.  However, now we need to juggle how "wrong" it is choosing to stay in New Orleans and go with Dr. Butcher.  The surgeon who we know and trust and really like, at a hospital where we are in-network and it will be the cheapest, where we are so familiar with, where we have good friends, and know doctors and nurses and have so much support.  But with the slightly increased risk that this cancer will continue to be a thing we could have to deal with following a major surgery.  Or whether giving up that mental security and familiarity is worth it for the greater possibility of getting it all taken care of and done with at once, by the expert, but in a city we're not familiar with. Where we know probably only one person, and it will be more expensive. Who's to say our odds are really that different?  We wish we could fast forward our lives with both options and see if the outcomes wouldn't be identical.

We seem to be leaning towards going with the expert, Dr. Moley.  However our biggest hesitation is that our insurance would be out-of-network, if it even would cover us there at all.  If we don't get the coverage we are looking at probably around a $50,000 bill for this whole thing.  No thank you?  Our waiver to go to MD Anderson finally went through yesterday, and so today we are going to be on the phone with our insurance company again for quite a few hours probably, trying to see what we can do about transferring that to Wash U or getting a new one approved.  So many fun things to tackle!

Please pray for us as we try and make the best decision with all of this.  We're definitely needing guidance right now.  We're driving back to New Orleans this morning and are ready to be home and get a little rest.  For some reason we were completely drained last night - couldn't quite figure out why?  But after some of the best Mexican food we've eaten in a long time at a little hole in the wall restaurant and a glass of wine, along with a good night's sleep at the hotel, we're feeling much better today.  Thanks for the prayers everyone!