The good news is that the size of the tumor is not as large as we originally thought (based on the results of a sonogram when he was 5 days old). At this point it is 2.6 cm at its longest point and sits on top of his kidney within the adrenal gland. We also learned that the tumor is cystic, meaning comprised mostly of fluid contained within a sac, whereas most neuroblastomas are solid tumors. The doctor called this cystic neuroblastoma. These are a very rare type of neuroblastoma with very few documented cases. The oncologist is still working on the assumption that Asher's tumor is neuroblastoma although without a biopsy they do not know for sure.
However, this does not change the medical protocol for Asher which is to continue to scan and evaluate the tumor at regular intervals (every 6 to 12 weeks) to determine if it has changed size. Our doctor takes a conservative approach to ordering CTs on infants like Asher and thus will alternate CTs and ultrasounds until he is 2 years old.
However, this does not change the medical protocol for Asher which is to continue to scan and evaluate the tumor at regular intervals (every 6 to 12 weeks) to determine if it has changed size. Our doctor takes a conservative approach to ordering CTs on infants like Asher and thus will alternate CTs and ultrasounds until he is 2 years old.
Because of the high likelihood of a positive outcome due to catching it early, we are now in a wait and watch mode. There are a couple of potential scenarios:
- The tumor could resolve on its own (converts into ganglioneuroma), the best possible outcome
- If the tumor increases size by 50% or more they will surgically remove it
- If there is no change after two years we will need to decide what to do at that point
We followed up with our pediatrician today (Friday) to discuss the results and our options and we've decided that we would like to pursue a second opinion to see what another pediatric oncology group would recommend before making our final treatment decision.
