Monday, February 9, 2009

To scan or not to scan. That is the question.

Good Morning! Well, the response to "The First Unwritten Rule of Neuroblastoma" was very good. Secretly, I was hoping for someone to stand up and argue another side. I was really, really prepared for it. I still haven't given up but, being honest, I knew it was a pretty easy argument. That is the reason I started with that subject. Some of the other rules I plan to write about will be more open to dissenting opinion. I must admit arguing for a second surgical opinion for one of the most difficult tumors in the world to remove is not really a stretch.

Yes, I played it safe.

So, I also received several email and messages asking about the status of Sydney's leg(s?). I would love to tell you that it had gone away but I can't. I can tell you that it has moved, changed legs, and come and gone. But, unfortunately that does not make us feel any better. If anything, it makes us feel a bit worse.

We are still trying to decide what to do.

There are two issues. First, there are 1 million and 1 reasons she could have pain in her legs that have nothing to do with neuroblastoma. Some of our top suspicions include injury, the fact that she has recently begun Tae Kwon Do, she has been playing a game which specifically tires her leg muscles, or the fact that she is growing. We have some very solid leads. We also can't rule out long term effects. She has very definitely injured one of her thighs. There is a bruise and we can tie that to a specific injury. And, yes, at one point or another she has said that the spot hurt. The problem is that she has also identified other areas and every time we talk to her we seem to get a different answer. The left leg has hurt and the right leg has hurt. It has hurt near the top, near the middle and on the side.

So, in short, we have a bunch of good possibilities of why her legs could hurt and where they hurt. It is just that nothing is clear to us.

The second issue is the scanning. It isn't like a quicky x-ray will provide us any value. Think about it. If it is neuroblastoma, it isn't likely that we would see it on an x-ray unless it was pretty advanced. And, even at that, we would have to follow it with other scans. What if it did not show us anything? Would it give us any confidence that it wasn't neuroblastoma? No. We just might feel better that it hadn't eaten through the bone. So that leaves us with a bone scan, MIBG, and marrows. Bone scan would be non specific. She may no longer be MIBG positive. Finally, the bone marrows may not show anything in the hips when the issue is in the thigh. So, you see, there is no simple test. If we commit to doing this we have to go all the way. We are talking about a week of scans for Sydney. How worried are we? Is it worth the increased risk from radiation exposure and contrast?

I don't know yet. I think Sydney and I will have to have a big heart to heart this morning.

Purpose does not mean easy answers.

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