We have been told scans are basically optional according to COG protocol after 3 year scans. Is this what everyone is told? In the beginning we were told 5 years.
My friend Diana texted me this in response, but is in the middle of contractions (!!!) and unable to post here.
We’ve never been clear for 3 years, but MsK does 3 month follow-ups(ct, MIBG, and bm) for minimum 3 years. They’ll adjust to 6mos after that until 5 years. After 5, they’re annual.
My personal opinion knowing the nature of this vicious beast, is to scan a minimum of every 6 mos for a few years. I would drop marrows if 4-site aspirates and biopsies have been negative for years, but definitely image the body.
There are many factors to consider…
-age at dx
-response to induction therapy
That does seem to be the way things are trending.
Way back when we were first starting out (2007) , we were told scans would be every 3 months for a couple of years, then every 4 months, then every 6 months until 5 years.
I get the rationale of weighing exposure risk vs disease risk, but I agree with the above that knowing what far too many of us know too well, droppijg scans after 3 years wpuld be scary.
I can’t imagine how utterly adrift parents must feel when they go from regular appointments and scans to little monitoring…then to nothing. Sounds frightening to me.