I wanted to add a brief post about scanning and ASPS and recording keeping.
I think there's a need for families to be aware of the fact that monitoring scans especially in the setting of ASPS can be subject to errors and variability and inaccuracies. I don't know a simple solution to this, but there may be some benefit to getting copies of your (or your child's scans) each time, and getting help of one's physician (or physician family friend) to personally review them with you.
There's a lot of information that doesn't get out patients especially by the time ASPS is metastatic. There may be several reasons for this - for many diseases, once the disease is metastatic, whether there are a few more nodules or a little growth may not seem to be clinically significant, so a radiologist may not look or comment on this. Sometimes one just sees "multiple nodules" for the final report- and not careful noting of size changes. RECIST criteria make this worse because "stable" nodules can mean size increases up to 20%. But it often is important (I think) in ASPS because of its clonal variation. If one drug takes 20% of the nodules out (or stabilized them), it might be useful to stay on the drug and just thinking about surgery / RFA / cryoablation if you get an aggressive tumor or one located in a dangerous area.
Radiologists have huge stacks of scans they have to work through every day and often it will be a different radiologist who reads the scan every time. If they're good they'll compare to prior scans, but mistakes can also be made if the comparison is made to the wrong scan (e.g. staging vs. pre-drug).
Also we have often found there is some pressure to do non-fine cut CT's (i.e. 5 mm instead of 1 mm cuts). It is a real nuisance to us that we (both doctors) have the hassle the CT techs at Seattle Childrens every time we want a fine cut CT (requested by our UCLA surgeons). Needless to to say, the difference between fine and gross or regular cuts will definitely impact on some folks re: detecting size changes or if nodules develop close to vital structures (like the main bronchus or heart).
Oncologists may review scans, but they don't always think like surgeons who may make different decisions regarding timing of surgery depending on the anatomy of the nodules. All the good surgeons are very busy and it is more common to see and have your oncologist look at it than the good surgeon that you jumped through hoops to see. Good surgeons are usually in the OR.
Finally, ASPS examination of one's scans can be very important because changes take place over a longer time period and assessments affect how you view response to drug or resectability of metastases.
At Seattle Childrens and UCLA, we have always left with a CD of 'K''s study the same day as she had the scans. Usually this is within 15-30 minutes, sometime they tell us to come back a few hours later.
The most common format (DICOM) plays in any computer. We always keep a copy of the CDs, but make additional copies for other doctors. In CD form, the films can easily be added into the hospital Radiology 'system' and this can be very valuable for the various doctors comparing films. We also have electronic copies of all of her essential notes and reports (pdf files) that can be sent by email if we want to expedite a second opinion or review by a physician. This definitely helped expedite our review when we were applying for age waivers for XL880 and ARQ 197.
Radiology reports can usually have be dictated within 24 hrs. We have a digital fax line so faxed information gets translated into a pdf file that we can attach to emails.
Hope this helps.
The Truth About Scans and Radiology Readings
Limitations of scans and their usefullness. Follow-up schedules.
Return to “Scan Types and Follow-Up”
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