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Chelee · 07-22-2006, 02:10 PM

Lani, Wow, I am totally overwhelmed by all the replies and ideas of how to help me.
I WISH I COULD go to another hospital or center for tx...but I can't. Thats how THEY get away with this crap in my opinion! They KNOW they have you locked in and you can't do anything about it. I am in a HMO...and its a GROUP that you are enrolled in. You can ONLY go to this ONE hospital and through this GROUPS doctors. If you go OUT OF NETWORK as they call it...it costs a fortune. So they know you have no way out unless you are rich.

I did change to another oncologist once in this group...but they all know each other so it doesn't help much. At first it seemed better...but in the long haul...nothing really changed...in fact its worse now.

I have always been the type to WALK from any place I am NOT happy with...and I would love to in this situation. But its impossible. So I have been TRYING to do like you said...OPEN up some other doors. I did manage to open a NEW door with this big head lady that runs & over sees the doctors, infusion room, and all aspects of treatment. She seemed really nice and open to my concerns and problems. She tried answering all my question and tried to address all my concerns. (But I will wait to see if there are any repercutions to this?) I don't want to get too excited about it.

Sometimes it seems like I am getting some where and then it comes back to bite me in the butt.

But she really did seem very nice and even made a call to a doctor to come up and read and EXPLAIN my last PET/CT scan to me. I did not expect that. Seems she really is trying and she did say someone SHOULD of answered all these questions for me. (She KNOWS they didn't after talking to me.) She did see how happy I was when I left. I told her thats all I have wanted is things explained so that I don't have to leave there and go home and worry about whats really going on with me since no one will explain anything to me.

She said to come back ANY TIME If I need things answered...that she would be more then glad to help me. (Hopefully she will go and talk to all these people that have been blowing me off.) She would never tell me if she does...but that is what I am hoping she does.

I don't think she was very happy to see the few things that I could NOT get answers too and I have a RIGHT to know these things. Plus she could see WHY I was so worried when my PET scan says I have a enlarged node II in he carotid space. But yet I told her my doctor said not to worry about it. I don't think she was very happy about it. I hope I am not reading her wrong...and that she really does care? Time will tell.

Thanks Lani!

Chelee

07-22-2006, 02:10 PM	#11
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Lani, Wow, I am totally overwhelmed by all the replies and ideas of how to help me. I WISH I COULD go to another hospital or center for tx...but I can't. Thats how THEY get away with this crap in my opinion! They KNOW they have you locked in and you can't do anything about it. I am in a HMO...and its a GROUP that you are enrolled in. You can ONLY go to this ONE hospital and through this GROUPS doctors. If you go OUT OF NETWORK as they call it...it costs a fortune. So they know you have no way out unless you are rich. I did change to another oncologist once in this group...but they all know each other so it doesn't help much. At first it seemed better...but in the long haul...nothing really changed...in fact its worse now. I have always been the type to WALK from any place I am NOT happy with...and I would love to in this situation. But its impossible. So I have been TRYING to do like you said...OPEN up some other doors. I did manage to open a NEW door with this big head lady that runs & over sees the doctors, infusion room, and all aspects of treatment. She seemed really nice and open to my concerns and problems. She tried answering all my question and tried to address all my concerns. (But I will wait to see if there are any repercutions to this?) I don't want to get too excited about it. Sometimes it seems like I am getting some where and then it comes back to bite me in the butt. But she really did seem very nice and even made a call to a doctor to come up and read and EXPLAIN my last PET/CT scan to me. I did not expect that. Seems she really is trying and she did say someone SHOULD of answered all these questions for me. (She KNOWS they didn't after talking to me.) She did see how happy I was when I left. I told her thats all I have wanted is things explained so that I don't have to leave there and go home and worry about whats really going on with me since no one will explain anything to me. She said to come back ANY TIME If I need things answered...that she would be more then glad to help me. (Hopefully she will go and talk to all these people that have been blowing me off.) She would never tell me if she does...but that is what I am hoping she does. I don't think she was very happy to see the few things that I could NOT get answers too and I have a RIGHT to know these things. Plus she could see WHY I was so worried when my PET scan says I have a enlarged node II in he carotid space. But yet I told her my doctor said not to worry about it. I don't think she was very happy about it. I hope I am not reading her wrong...and that she really does care? Time will tell. Thanks Lani! 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.