Thursday, July 8, 2010

Legacy of an incomplete resection

Good morning! First off, I am happy to report that Lynley had an excellent birthday. Kudos to everyone for going out of the way for making her day special. She was blown away by all of the well wishes. I think we proved ,once and for all, that birthdays did not have to be a big disappointment.

On another note, now that we have made it back home it is, once again, time to get our brains wrapped around Sydney's "retro crural fullness." In the last few days, I have received some email from both Dr. Eames and Dr. Granger. They both feel rather confident that this is not new growth and probably just scarred down old tumor or post operative changes.

They believe the pars defect in L5 is very likely difference in ‘slice’ on CT through the lumbar vertebrae and depends on where the slice goes through the disc. This has also been present for greater than 3 years. Furthermore, in February of 2008 it was stated on the report to be “of no clinical significance”. It could also be a ‘congenital’ development of that vertebrae that is just how Sydney is built. That alternative is also of no clinical significance and not felt to be related at all to her Neuroblastoma.

Bottom-line, after careful review (3 times within last few weeks) with radiology, both Dr. Eames and Dr. Granger feel she does not have any evidence of recurrent tumor and needs no further investigation with other studies at this point in time. However, they do believe we should follow her abdominal CT and chest CT every 6 months for 3-4 more times before stopping all scan follow-up.

That is what they say. So, how do we feel about it?

Well, if you are going to find a chunk of tumor in your daughter 7 years after her original diagnosis, I guess I am pretty thankful that this is what we found. This is pretty much the best case scenario of finding neuroblastoma in your child. However, I still don't like it and I certainly would feel better today if we had found nothing.

As for the belief that this is not recurrent tumor, well, I think that is right on point. However, I don't believe from this set of scans that you can truly say that it is stable in size and not growing. It could be growing very slowly. I still would be feel much better if we reviewed scans from an earlier period. I think more data would give us a better indication of whether this was truly growing or not. However, with that being said, I think they are probably correct. Given the fact that we are reviewing this over a period of 3.5 years it certainly does not appear to be growing.

There are questions that sit in the back of my mind though. How does this chunk of old dead tumor impact her chance of relapse? Is it more likely? How much more? For all of those questions, I am answerless. Frankly, I don't believe anyone knows those answers with any level of assurance. But, is this the reason that kiddos have late relapses? Are we simply smoldering here? Could this be the spark to relight the fire?

I know, nightmarish thoughts, but, if we don't ask the question, who will?

The other problem with all of this is that, even if I could make a case that this would significantly increase her chance of relapse, I could never prove it. Without proof I would have a 0% chance of convincing someone to go in and remove it.

Ironically, this comes down to an issue that I have been very vocal about for years - the nasty legacy of incomplete resections in neuroblastoma.

In that scenario, no amount of purpose will bring clarity.

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