Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I don't know whether this would help anybody, but we also considered this paper in our thinking about our daughter's lung nodules.

At Seattle Childrens, our daughter has Helical Chest CTs - these are remarkably quick as well as show much more dramatic detail than conventional chest CTs. When we went back for a higher resolution scan, they performed 1 mm slices (fine detail).

This paper showed how common benign nodules were picked up among children with known primary tumors. You can access the entire paper free. This is not an ASPS paper, but ASPS is a solid tumor. It can also point to the difficulty of simply excising every pulmonary nodule that is detected. Are the benign nodules unrelated? Or are they evidence of small metastases that are being successfully eliminated by the immune system?

http://radiology.rsnajnls.org/cgi/conte ... /239/2/514

In our daughter's case, she had 3 nodules 1.5-2.5 mm. 2 had definite calcifications so were thought to be benign. The third was indeterminate. We are still awaiting Dana Farber's Tumor Board meeting, but we are leaning toward a short course of SUTENT (e.g. 2 months) to attempt to reduce the size of the primary. We would also think this could help scavenge small metastases that are just starting to grow elsewhere in her body.

It is right - there is a high number of the benign nodules picked up by the helical/high resolution multi row CT which hard to tell apart from the small lung mets but when the pattern of metastasis to the lungs is well established for a certain type of the cancer - the level of the danger that these findings are the true lung mets is much higher then in general for solid tumors. All ASPS patients we know here have multiple lung mets already or get them at some point of their history, most of the patients in the studies we have collected here have lung mets. Even small sized ASPS primaries have very high ability to metastasize and calcification is not a rare findings among ASPS lung mets. My son had a few of the shown as calcified which were found true vital ASPS lung mets on the resection. Charity Osome had some lung mets found necrotic but she had her surgery after the previous chemotherapy. Also Dr.Nickerson had the cases whe he found some % of the ASPS lung mets to be necrotic/partially necrotic when the resection was done after two chemotherapy courses (Ewing's protocol).

Thanks, Olga. This is wise to remember. I also found that despite helical CT, intraoperative findings are still more sensitive than this imaging.

We are destined for SUTENT now anyway, so it's a reminder to check chest CT when assessing response.