Oncologist

We saw the pediatric oncologist on Wednesday. It was mostly just meeting him and getting all our "ducks in a row" still. He wants to follow along with Simon's care monthly as well. He was going to talk with the surgeon and set things up with her as well as far as if we would go to him one month then the surgeon the next and just touch base with her about how they wanted to proceed.

The office was very bright and festive and had lots of toys and things for the cancer kids to play with. It was kind of sad though, seeing some kids there for treatment and their little bald heads. But you could tell that the doctor and nurses there took good care of them, because the kids seemed in good spirits and happy to see the doctor-not scared of him.

He was very kind and seemed like he would stay on top of things. He found out, when he went to check the urine test results, that they did the wrong test at the hospital. So yesterday I collected another sample and took it in. He said that Neuroblastoma tumors don't always produce these markers, but if this one does, then it will be a helpful tool in tracking the tumor. If it doesn't produce them, then it is a useless test.

(Also, since we have not done a biopsy on the tumor, there is a slight chance that it could be something else. But he said that it looks like a neuroblastoma, acts like one, and seems to be one, so we are just assuming that it is)

I asked him if the tumor would grow in relative size to Simon and he said that it might for a little while here at the beginning but it should level out and stay the same or regress. Unless it is going to grow of course then it would get bigger and that is when we would want to remove it. One concern, he said, was that if it got too big, it could push on his diaphragm or lungs and cause breathing problems. He said that if it grows quickly and gets quite big then we would maybe do a low dose of chemo first. He said we had a few options of how to treat it if need be.

Matt asked him how quickly it could grow/spread and he said that potentially it could just take a few weeks to change a lot so it was very important to keep up with it and track it. He said that usually though, if it is an aggressive tumor that it would start out aggressive. 

Then I told him how the tumor had changed in appearance while in utero and asked him what would cause that or why would it do that. He told us that the probable cause was that it grew rapidly (as babies grow rapidly and it was still growing with Simon) and that it "out stripped" itself.

We will have another appointment with the oncologist in 2 weeks and should have the results of the urine test by then and we can go over those. And then at that appointment we will set up an appointment for the sonogram in the next couple of days. The doctor wanted all the results possible before he planned out the course of treatment /setting up monthly sonograms, etc. 

He said that they don't know a whole lot about neuroblastoma tumors and why they occur and why sometimes they go away on their own and sometimes they don't.

He seemed like he would be up front with us and wouldn't try to sugar coat things. Somewhat I think I have felt like with the surgeon, she wants us to just forget about the tumor until we check on it monthly and that it would be silly of us to be worried about it, since statistically the chances of it going away on its own are quite good. But the oncologist made us feel validated in still being concerned (not overly worried) that it could potentially be quite serious. 

One thing we didn't think to ask at this appointment was if he had any insight about this cancer or other cancers being more of a concern later down the road, since he has this now. We'll try to ask him next time but I don't know if he will have any answers for that or not.