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Chelee · 06-21-2006, 12:57 AM

I am sorry as I don't have the answer for you either. But you sound like me. I got my last scans back and my oncologist said they were great. She did NOT know I had picked up a copy of the report before I went to her office. (I am getting sneaky.) But I HAVE too...they don't tell me anything at this place...its like pulling teeth...and its my body and I have a right to know EVERYTHING.

So after being told it was CLEAN...and nothing to worry about. I found several things on the report that did NOT sound good. Fluid build up in one area of the axilla. A couple other BIG words I can't spell right now that had to do with my lungs. All kinds of things. Plus my hip LITE up on the scan and she said it all was fine.

So I got back in touch with her and she said all that stuff I read was nothing for me to worry about. She said she was NOT concerned or worried about any of it. Sorry...when the report says these things should be looked into...it concerns me.

So I know how you feel when you read your report and your doctor tells you its fine. My way of thinking...if it IS all fine...then simply sit down long enough to EXPLAIN what these things mean that I obviously don't understand. I don't think that is asking too much. I even told my oncologist...your the expert..so I need your help in translating this to me.

Hopefully someone HERE Sherry will know what that means? I am sure YOUR oncologist is much more trust worthy then mine. It just might be some scar tissue build up from chemo, rads, or something else.

I wish our doctors would understand we just want to understand these things. Its NOT like we don't believe them...but we just need things explained to us so we don't worry. Its called peace of mind.

Hang in there Sherry...but I am sure your doc is being honest...it probably is nothing to worry about. Someone here will surely know what it means. Wish I could of been of more help...because I know how it feels to read that and not know what it means when they say its fine.

Chelee

06-21-2006, 12:57 AM	#3
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	I am sorry as I don't have the answer for you either. But you sound like me. I got my last scans back and my oncologist said they were great. She did NOT know I had picked up a copy of the report before I went to her office. (I am getting sneaky.) But I HAVE too...they don't tell me anything at this place...its like pulling teeth...and its my body and I have a right to know EVERYTHING. So after being told it was CLEAN...and nothing to worry about. I found several things on the report that did NOT sound good. Fluid build up in one area of the axilla. A couple other BIG words I can't spell right now that had to do with my lungs. All kinds of things. Plus my hip LITE up on the scan and she said it all was fine. So I got back in touch with her and she said all that stuff I read was nothing for me to worry about. She said she was NOT concerned or worried about any of it. Sorry...when the report says these things should be looked into...it concerns me. So I know how you feel when you read your report and your doctor tells you its fine. My way of thinking...if it IS all fine...then simply sit down long enough to EXPLAIN what these things mean that I obviously don't understand. I don't think that is asking too much. I even told my oncologist...your the expert..so I need your help in translating this to me. Hopefully someone HERE Sherry will know what that means? I am sure YOUR oncologist is much more trust worthy then mine. It just might be some scar tissue build up from chemo, rads, or something else. I wish our doctors would understand we just want to understand these things. Its NOT like we don't believe them...but we just need things explained to us so we don't worry. Its called peace of mind. Hang in there Sherry...but I am sure your doc is being honest...it probably is nothing to worry about. Someone here will surely know what it means. Wish I could of been of more help...because I know how it feels to read that and not know what it means when they say its fine. Chelee __________________ DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes. Rt. MRM on 1-3-06 -- No Rads due to compromised lungs. Chemo started 2-7-06 -- TCH - - Finished 6-12-06 Finished yr of wkly herceptin 3-19-07 3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07 9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV. 9-28-09 Loading dose of Herceptin & started Zometa 9-29-09 Power Port Placement 10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head. 11-19-09 RT. Femur surgery - Rod placed 12-7-09 Navelbine added to Herceptin/Zometa. 3-23-10 Ten days of rads to RT femur. Completed. 4-05-10 Quit Navelbine--Herceptin/Zometa alone. 5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy. Results to FISH was unsuccessful--this happens less then 2% of the time. 7-7-10 Recurrence to RT axilla again. Back to UCLA for options.