Not particularly good news

Well, crap!

It would have been really nice to write a post just before we left trumpeting good news from our scans.

That is not what we received.

We met with Dr. Granger today. Before we had even sat down she was already preparing us for the news. She told us that it sounded bad but she really didn't think that it was necessarily so. In fact, she gave every indication that she did not feel that it was neuroblastoma. It was a concern - obviously - but she was not ready to jump to conclusions.

That was how it began.

The official report read:

CT abdomen findings: The liver, gallbladder, pancreas, spleen and right kidney shows no acute findings. There is compensatory hypertrophy of the right kidney and an atrophic appearing left kidney. Surgical changes are noted at the celiac axis. There is fullness to the right retrocrural region. This is best seen on axial image 46. This is nonspecific but could represent residual neoplasm. This measured 12 mm in AP by 19 mm transverse today compared to 9 x 21 mm previously. The aorta has a normal appearance. The bowel has a normal appearance without evidence of obstruction, mass or wall thickening . Pars defects are again noted at L5.

The long and the short of it is that there is something on her CT scan. It is 12mm x 19mm which is pretty small. However, we still have to suspect that it could be residual tumor. There is good news though. Looking at her scans over the last 3 years this mass" has always been there. Over the last 3 or so years it has nearly tripled in size but that is tremendously slow growth (especially for neuroblastoma) and could simply be due to the way the CT slices the images. Better yet, most of the growth appears to have occurred between 2007 and 2009. In other words, it could be simply changes in the scan not in the "fullness"

So today, instead of doing all of those things that I have been supposed to be doing, I have been learning everything I can about neoplasms in the retrocrural region. Unfortunately, that has not made me feel any better. The fact is that this region is a happening place for neuroblastoma and there are few other things it could be. Well, that is not true, there are a lot of other cancers that could cause this but given her history one has to suspect the worst. It could also be an enlarged lymph node. Then again, in this area anything over 6mm is considered suspicious.

Even with all of that, though, there is still some good news. Her MIBG did not light up in this spot. Her MIBG, as I suspected, was perfectly clean. That could indicate that this may not be neuroblastoma. Secondly, and I know I am coming back to this, but it is very slow growing. It could be a ganglioneuroma or something else slow growing and benign. Wouldn't that be awesome? I would suspect neuroblastoma to be far more aggressive. Finally, disease was noted no where else. There were no other enlarged lymph nodes and everything else appeared pretty normal. Whatever this is, it appears to be very localized.

So, we have to take all of this with a grain of salt and not get too panicky. While my first thought is to go in surgically and cut it out, I have to give all of the experts time to weigh in with their opinions. Over the next few days and weeks we will give many the opportunity to weigh in. We will be getting a second opinion on the radiology report and her case will be discussed by the tumor board. Additionally, we will be talking to a few experts around the country to assess their thoughts.

We have the luxury of some time to figure out (a) what this is and (b) what we can do about it.

Still, it was not the news we wanted to hear.

Purpose and prayers - need I say more?