Kids' Calcitonin Results For Cancer

Dr. L called me today with BigB and Sis's calcitonin level results. Calcitonin is what they test to see if the medullary cancer is present/has started. Normal levels are 5 or under.

She said that Big B is at 28 and Sis is at 24 meaning that although the numbers are low.... the medullary cancer has started in them. She tried to make it sound like it's not a big deal but considering I've researched this well and know EXACTLY what everything means, I know that it's much better than if it was higher but still it isn't what you hope for. I mean, cancer is cancer no matter how much or little a person has. The fact that neither one has any lumps or swollen lymph nodes that we could feel in their neck though is a good sign. All we can hope for now is that it hasn't spread past their thyroids. If it has stayed there and not gone near any lymph nodes then the thyroidectomy will still rid them of it.

I just keep thinking over and over that this just SUCKS!! I think I made the mistake of getting my hopes up after the pheo results came back negative. Why I let myself hope I don't know. I guess I just wanted and needed to hope for SOMETHING.

So Vin now feels that I should get the kids' thyroidectomies at the same time I get my adrenalectomy. I just can't get through to him that I HAVE to be there for them when they get this done. This is the biggest thing to ever happen to them and I NEED to be there. It's my job. I'm their mom. Period! He talks about what's convenient but I talk about the heart. Something we also have problems with. *sigh*

The Pediatric Endocrinologist from Florida STILL hasn't bothered to call me to say whether or not Shands in Gainesville will take on the kids' cases. So I get to call her tomorrow and ask her what the hell is going on.

I just have a problem understanding why we're paying people to ignore us, blow us off, and screw up our stuff. What is so hard about them calling me when they say they will or even at least in that same WEEK??! I am thus far very not impressed with doctors.