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Chelee · 02-28-2007, 01:22 AM

CLTann, You are using the RIGHT word when it comes to the way my onc has treated me...it IS "criminal". Thats why I really do not for the life of me understand how they can get away with this?! What bothers me even more...if they are doing this to me...you know there are others. And most will NOT speak up & go as far as me & just take the abuse. That is why I would love to find a way to straighten this out...no one going through cancer trt deserves to be treated this way!

I know when I was first DX and I was NOT getting answers to my questions about what her2/neu, herceptin, Er & Pr status, FISH test, you name it! My cancer team started telling me to QUIT spending so much time on the internet...that is was NOT good for me. I let them know nicely it was the ONLY way I could find out anything. How many of you were told NOT to learn what you could about your DX, her2 status, etc? I bet not a one of you. Even all the books I was sent from the American Cancer Society said to learn all you can and stay involved. I told them knowledge was power and it made me more comfortable to understand all this. They said actually it can be a bad thing too. Ha. They really have a problem with me staying on top of things....and actually they SHOULD like it. Every place else likes it...not mine it seems.

Thanks for the support CLTann.

Chelee

02-28-2007, 01:22 AM	#14
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	CLTann, You are using the RIGHT word when it comes to the way my onc has treated me...it IS "criminal". Thats why I really do not for the life of me understand how they can get away with this?! What bothers me even more...if they are doing this to me...you know there are others. And most will NOT speak up & go as far as me & just take the abuse. That is why I would love to find a way to straighten this out...no one going through cancer trt deserves to be treated this way! I know when I was first DX and I was NOT getting answers to my questions about what her2/neu, herceptin, Er & Pr status, FISH test, you name it! My cancer team started telling me to QUIT spending so much time on the internet...that is was NOT good for me. I let them know nicely it was the ONLY way I could find out anything. How many of you were told NOT to learn what you could about your DX, her2 status, etc? I bet not a one of you. Even all the books I was sent from the American Cancer Society said to learn all you can and stay involved. I told them knowledge was power and it made me more comfortable to understand all this. They said actually it can be a bad thing too. Ha. They really have a problem with me staying on top of things....and actually they SHOULD like it. Every place else likes it...not mine it seems. Thanks for the support CLTann. 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.