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Chelee · 07-22-2006, 06:48 PM

Hi Kimberly, Your post sounds like you have been almost the EXACT same place I am at. Oh my heart goes out to you. Isn't it awful having to fight this dreadful disease and have to keep switching oncologist and trying to find just ONE that is in your corner and really seems to care about whats in your best interest instead of being treated like a *number*.

I liked your one liner there about voting with your feet and wearing out your shoes. lol (So TRUE!)

I have experienced just what you mentioned. When you mentioned its like a marriage and you have to be careful not to nag or it gets worse. Oh boy do you have that right! Seems like everything I did to get THEIR attention, or to find out why I could not get answers to my questions...things got worse and worse. I was having my surgeons nurse practioner that knows all these people very well intervene for me to see what the problem was? They all told her there was NO problem. In fact my oncologist told her she likes me and as far as not telling me what I need to know...thats just the way she is. (Say what!) Long story shorter...every time I TRIED to fix the problems by one means or another...it got worse and worse. It was like a power play to them...they wanted to SHOW me who holds all the cards. They win every time...and they know full well I am STUCK seeing the same doctors in that group which are all in the SAME building.

I FINALLY got it through to them that I will NOT be going to Rads until that Rad oncologist answers my questions. So what do they do?! They ALL know down there that mornings are same as impossible for me. (So they make sure all my appts are as EARLY as possible to make sure i am misrable.) I am ready to call the "ADA"...because before bc...I am disabled...and they have been making my life a living he$$.

This Rad onc doctor has been trying to avoid me it seems. So I told the girl Friday I would NOT be starting rads till he talked to me...period. I said I am missing RIBS on that side and I can't afford to have anymore lung damage or if I need chemo again...I won't be able to do it if I can't breath.
I said this Radiation doctor has NOT ran in to anyone that has MY problems...so he NEEDS to tell me what his plans are so I can decided whats best for me. So she comes back and tells me my appt is 8:30 AM Monday knowing full well that is too early for me. I said you CAN'T make it later. She said he is REALLY busy. Isn't that too bad...I have waited six months to get to this point...you can't tell me that is the ONLY day he can talk to me and it HAS to be 8:30 AM.

(I know WHAT they were thinking...that if they made my appt EARLY knowing I don't like mornings...that I would just CANCEL it and go through with Rads and he*wouldn't* have to talk to me.) I know all their games!

Plus non of this makes sense. They said I HAD to start rads at least between 3 to five weeks at the most. It will be SEVEN weeks this monday. So if he is right...its already to LATE for me to start? Why did he tell me 3 to 5 wks and drag it out so I am going to be starting so late? Nothing has went right since I started this. ARGH!

Thanks for your post Kimberly. Good luck with Mr. OK...and I pray you find Mr. Right SOON!!! I don't think thats asking to much. Good luck to you. Hang in there...some how we will come out of this ok regardless of how they made it so difficult. Hang in there. Hope your Rads is going ok so far.

Chelee

07-22-2006, 06:48 PM	#11
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Hi Kimberly, Your post sounds like you have been almost the EXACT same place I am at. Oh my heart goes out to you. Isn't it awful having to fight this dreadful disease and have to keep switching oncologist and trying to find just ONE that is in your corner and really seems to care about whats in your best interest instead of being treated like a number. I liked your one liner there about voting with your feet and wearing out your shoes. lol (So TRUE!) I have experienced just what you mentioned. When you mentioned its like a marriage and you have to be careful not to nag or it gets worse. Oh boy do you have that right! Seems like everything I did to get THEIR attention, or to find out why I could not get answers to my questions...things got worse and worse. I was having my surgeons nurse practioner that knows all these people very well intervene for me to see what the problem was? They all told her there was NO problem. In fact my oncologist told her she likes me and as far as not telling me what I need to know...thats just the way she is. (Say what!) Long story shorter...every time I TRIED to fix the problems by one means or another...it got worse and worse. It was like a power play to them...they wanted to SHOW me who holds all the cards. They win every time...and they know full well I am STUCK seeing the same doctors in that group which are all in the SAME building. I FINALLY got it through to them that I will NOT be going to Rads until that Rad oncologist answers my questions. So what do they do?! They ALL know down there that mornings are same as impossible for me. (So they make sure all my appts are as EARLY as possible to make sure i am misrable.) I am ready to call the "ADA"...because before bc...I am disabled...and they have been making my life a living he$$. This Rad onc doctor has been trying to avoid me it seems. So I told the girl Friday I would NOT be starting rads till he talked to me...period. I said I am missing RIBS on that side and I can't afford to have anymore lung damage or if I need chemo again...I won't be able to do it if I can't breath. I said this Radiation doctor has NOT ran in to anyone that has MY problems...so he NEEDS to tell me what his plans are so I can decided whats best for me. So she comes back and tells me my appt is 8:30 AM Monday knowing full well that is too early for me. I said you CAN'T make it later. She said he is REALLY busy. Isn't that too bad...I have waited six months to get to this point...you can't tell me that is the ONLY day he can talk to me and it HAS to be 8:30 AM. (I know WHAT they were thinking...that if they made my appt EARLY knowing I don't like mornings...that I would just CANCEL it and go through with Rads and hewouldn't have to talk to me.) I know all their games! Plus non of this makes sense. They said I HAD to start rads at least between 3 to five weeks at the most. It will be SEVEN weeks this monday. So if he is right...its already to LATE for me to start? Why did he tell me 3 to 5 wks and drag it out so I am going to be starting so late? Nothing has went right since I started this. ARGH! Thanks for your post Kimberly. Good luck with Mr. OK...and I pray you find Mr. Right SOON!!! I don't think thats asking to much. Good luck to you. Hang in there...some how we will come out of this ok regardless of how they made it so difficult. Hang in there. Hope your Rads is going ok so far. 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.