B-Cell Malt Lymphoma to Bone Marrow

I was wondering if there is anyone out there with non-hodgkins b-cell malt lymphoma who originally did not have cancer in bone marrow upon dx but after marrow biopsy had it disseminate there.  Mine did exactly that and my doctors of course do not believe that is possible since it is a systemic disease etc. With malt being so rare I think they may be missing something by lumping it in with all other lymphomas.  I am scheduled for a lung biopsy tomorrow to try and dx a weird pattern in my lungs (not likely cancer) and I am scared to have them poke a hole in my lungs  and have the same situation happen.  Any stories would be so very appreciated.  Good luck to all and fight!

Carol

You wrote that at your first diagnosis you had no MALT in your bone marrow. However, only a bone marrow biopsy could have given your docs that information. So, either you didn't have a bone marrow biopsy initially and somebody misspoke at your diagnosis by saying it wasn't in your bone marrow, or you had a bone marrow biopsy at diagnosis.

It happens all the time that the bone marrow results will change. Once anyone is diagnosed their lymphoma doesn't stay precisely the same forever. That's why as time goes by there are scans to monitor you, comparisons with early tests, etc. as needed, to see how your MALT may be changing.

Maybe it would be helpful for you to join a group strictly for those with MALT lymphoma, since it is pretty rare. nhl-malt@yahoogroups.com is a good one. It's been very helpful to me.

Best wishes,

Carol