Evening all,
Unfortunately I do not have any real news to report tonight. I have some facts, I have some assumptions, and I have a lot of uncertainties. We may know more tomorrow, but I will bet it will be just a path forward and not the type of answers we would like to hear.
We met with Dr. Park this afternoon to discuss the scans. This is what we were told:
- There appears to be an increase in T’s abdominal mass, although the exact amount is not really known. The radiologist read it as a 7 mm increase, but when she and Dr. Park read it together Dr. Park realized they were using different benchmarks to measure than last time. She measured the increase as 3 or 4 mm (against what I am still not sure). The resolution on the new CT scans is pretty good and they are fairly certain they are now reading the edge of the mass where it meets the intestine (pushes up against it but does not involve it). This is not true of the older scans, so marking the edge was a little more interpretation and guesswork. So we apparently have a good measurement now, but everything to compare it to is somewhat unreliable.
- No matter how you look at the trend between individual scans, the mass has increased from the first scan two years ago to this most recent scan. Dr. Park is pretty certain of that. However the increase is not rapid and shows the type of growth that can be seen in a benign ganglioneuroma. So the growth as a diagnostic tool is not definitive.
- The radiologist reported that there were no abnormalities or MIBG active areas in the neck (where T has the lymph nodes removed last year). However, when Dr. Park looked at the scans, she thought that a couple (few?) of the remaining lymph nodes looked a little tiny bit bigger. Not enough to appear abnormal, but enough to arouse her curiosity given the location. The MIBG scan showed what appeared to be a mark, or an artifact, on the picture unlike a MIBG uptake signal (it was basically a straight line). The radiologist dismissed it as an artifact (like a hair on an old movie reel) but the line just happens to start at the spot where the suspicious lymph nodes are in the neck. Dr. Park is inclined to think it is an artifact but can not dismiss the coincidence of the location and wants to look at it more.
- The MIBG scan showed no increase in activity in the abdomen (finally, something good).
- The blood work we have back is all normal. This includes a new test we ran (Vasoactive Intestinal Polypeptide) to see if the remaining mass was causing Thomas’ loose stool issues. Apparently neuroblastomas can secrete a protein that can lead to diarrhea, but that does not seem to be the case with T (for the record, that particular problem is in general much better).
- His exam showed that he looked great and Dr. Park could not feel anything in his neck.
So what does this add up to? Who knows. T continues to baffle the docs. Dr. Park is presenting T’s case to the Tumor Board tomorrow. You may remember that the Board is a multidisciplinary group of docs with the Seattle Cancer Care Alliance that meets to look at interesting or perplexing cases. They bring many viewpoints to one place to speak about the case. The surgeons, oncologists, radiologists, urologists, etc. etc. are all in the same place to brainstorm. We will see what they come up with.
So what is after that? Depends what they decide. The radiologists are going to go through all the scans at once to ensure consistency and see how the size of the mass has progressed over time. There is another test that Dr. Park is thinking of doing to look at the lymph nodes in his neck. This PET scan can be directly overlaid on the CT scan to try and determine is anything is really happening there. If so, one or more of the lymph nodes may be taken for biopsy (as before, we would assume the cells in the lymph node would be similar to the abdominal mass and could give us an idea of what is happening there). There is a slight chance they may want to do a biopsy of the abdominal mass since it is the only real definitive way to see what is going on there, but that is something we would strongly argue against unless other options were ruled out. And there is the chance they will say wait another 2 or 3 months and we will redo the scans to see if we really saw an increase last time.
So we do not know much right now. We know the mass in his abdomen is still fairly small (2.5 cm by 4 cm). It is actually made up of a number of smaller tumors, the largest of which is 6 mm (0.23 inches). We know the MIBG uptake appears to be stable. We know that the nothing is emergent now and therefore needing action immediately. We know he is feeling great, growing well, and happy. And we know that, as maddening as it is for us, he continues to be unique in his disease and keep the doctors guessing at what is actually going on in that little body of his.
So (another “so”, sorry about that) stand by. We will update you when we hear the results of the tumor board. Thanks to all for the support in all this, we really do appreciate it even if we are not contacting people individually to thank you.
JV
|
