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Chelee · 08-10-2006, 03:50 PM

Is there any laws about your health care team dragging their feet and leaving a person hanging out to dry so to speak? The way I have been handled since day one just doesn't seem right.

Since my case was SUPPOSE to of been presented to a tumor board from day one...why didn't they have this problem with my radiation resolved, and figured out back then instead of DELAYING everything now?

They KNEW back then my anatomy was different...that I am missing ribs and they wouldn't be able to radiate my chest wall because I DON'T have a chest wall. (Pretty simple.) I thought the whole idea of presenting ones case to a tumor board is to figure out what the best course of treatment is for that person. From start to finish. I heard back then my surgeon, oncologist, Rad onc would ALL be involved in this meeting. So WHY did they NOT forseen this problem of radiating my chest when they KNEW I had no ribs!

I will be at week eleven NEXT week while they are just now discussing all this. I am so far past due to start rads. I feel they have taken my case lightly and could careless. Heck...the rad onc doc would of already radiated me had I not expressed my serious concerns about how bad my lungs are. I have 37% use of my lungs right now. Won't get any better either! Radiation will do permanet damage of at least 12% says the rad onc doc. My pulmonary doc is very concerned about me losing any more lung to rads.

They are having a meeting about me again today. (Thursday) I sit and WAIT and wonder when they are going to either tell me yes we can go ahead...or no its totally scratched. I have gotten the go ahead a couple times...then they STOP it again. Its back and forth! I am fed-up with this.

I am NOT on femara or tamoifen as mentioned. Only herceptin. All this DELAY over my rads has put me way past getting on femara or tamox as I mentioned. I need to stay on TOP of this bc...not just sit here and do nothing while THEY (Medical) team just keeps putting me off. They keep going back and forth with me and seems to be taking their SWEET time like I am NOBODY & NOT important.

First I have the ok do to rads...then they send me for another test or scan and tell me to wait. Then they call and say its ok...then I go in and they say NO...they need to talk to so and so. This has went on FAR TOO LONG. I have been more then patient. Yet they tell me NOT to get stressed out and maybe I ought to talk to someone. Meaning a therapist so I don't dwell on this. I wouldn't be dwelling on anything if they were doing THEIR job. Eleven wks past my rads...I think I have been more then patient. I have went to all their scans and tests. Here it is 3:30 PM and I have NOT heard from them today. They had their meeting about me this *morning* I was told. So WHY hasn't even one person called me! I always have to call them and they tell me they will get back to me. ARGH!

There has to be some RULES, or standard of care. Does anyone know if they are breaking any laws, or over stepping the rules surrounding the standard of care? They SHOULD of had this all discussed and figured out when they FIRST presented my case back in Feb. 2006. There is no excuse for this in my opinion. I have been patient and nice. (Would they do this to THEIR daughter, Mother, Brother, Sister, child, etc!) I think NOT.

Does anyone know if I have ANY rights to get them to get things moving one way or another? I didn't go through all the chemo for nothing just to sit here forever while they play games and take their time. I have family that would LIKE me around as long as possible even if they don't care.

If anyone is uncomfortable posting here about this...PLEASE PM me and tell me what I can do about this? Time is marching on and my TEAM doesn't seem to care about me.

Any help would be appreciated.

Chelee

08-10-2006, 03:50 PM	#1
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	What CAN I do? Is there any laws about your health care team dragging their feet and leaving a person hanging out to dry so to speak? The way I have been handled since day one just doesn't seem right. Since my case was SUPPOSE to of been presented to a tumor board from day one...why didn't they have this problem with my radiation resolved, and figured out back then instead of DELAYING everything now? They KNEW back then my anatomy was different...that I am missing ribs and they wouldn't be able to radiate my chest wall because I DON'T have a chest wall. (Pretty simple.) I thought the whole idea of presenting ones case to a tumor board is to figure out what the best course of treatment is for that person. From start to finish. I heard back then my surgeon, oncologist, Rad onc would ALL be involved in this meeting. So WHY did they NOT forseen this problem of radiating my chest when they KNEW I had no ribs! I will be at week eleven NEXT week while they are just now discussing all this. I am so far past due to start rads. I feel they have taken my case lightly and could careless. Heck...the rad onc doc would of already radiated me had I not expressed my serious concerns about how bad my lungs are. I have 37% use of my lungs right now. Won't get any better either! Radiation will do permanet damage of at least 12% says the rad onc doc. My pulmonary doc is very concerned about me losing any more lung to rads. They are having a meeting about me again today. (Thursday) I sit and WAIT and wonder when they are going to either tell me yes we can go ahead...or no its totally scratched. I have gotten the go ahead a couple times...then they STOP it again. Its back and forth! I am fed-up with this. I am NOT on femara or tamoifen as mentioned. Only herceptin. All this DELAY over my rads has put me way past getting on femara or tamox as I mentioned. I need to stay on TOP of this bc...not just sit here and do nothing while THEY (Medical) team just keeps putting me off. They keep going back and forth with me and seems to be taking their SWEET time like I am NOBODY & NOT important. First I have the ok do to rads...then they send me for another test or scan and tell me to wait. Then they call and say its ok...then I go in and they say NO...they need to talk to so and so. This has went on FAR TOO LONG. I have been more then patient. Yet they tell me NOT to get stressed out and maybe I ought to talk to someone. Meaning a therapist so I don't dwell on this. I wouldn't be dwelling on anything if they were doing THEIR job. Eleven wks past my rads...I think I have been more then patient. I have went to all their scans and tests. Here it is 3:30 PM and I have NOT heard from them today. They had their meeting about me this morning I was told. So WHY hasn't even one person called me! I always have to call them and they tell me they will get back to me. ARGH! There has to be some RULES, or standard of care. Does anyone know if they are breaking any laws, or over stepping the rules surrounding the standard of care? They SHOULD of had this all discussed and figured out when they FIRST presented my case back in Feb. 2006. There is no excuse for this in my opinion. I have been patient and nice. (Would they do this to THEIR daughter, Mother, Brother, Sister, child, etc!) I think NOT. Does anyone know if I have ANY rights to get them to get things moving one way or another? I didn't go through all the chemo for nothing just to sit here forever while they play games and take their time. I have family that would LIKE me around as long as possible even if they don't care. If anyone is uncomfortable posting here about this...PLEASE PM me and tell me what I can do about this? Time is marching on and my TEAM doesn't seem to care about me. Any help would be appreciated. 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.