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Lori R · 09-04-2011, 07:38 AM

Tricia,
Your description of how you had to be your own advocate reminded me that we can NEVER stop being our best advocate.

I encourage you to demand the PET scan. (not a Dr. so any other testing technique)

Take EVERY step possible to rule out (or detect) a cancer met.

Why would you not? Save time? I would bet that you would agree that a couple hours is a nominal investment. Hassle for Drs? Oh my....that's their job. Concern of overreacting? Ah yea....it's my life we are talking about here.

Go for it!!! Push to the point that you know in your heart you explored every test possible.

I was encouraged by a sister on this board to do so and I an convinced we found my liver met much sooner than if I had been passive.

I hope it is treatment related aches and pains but you have already proven you are one tough fighter and will manage regardless of outcome.

Please keep us posted....Lori

09-04-2011, 07:38 AM	#14
Lori R Senior Member Join Date: Jan 2008 Location: Evergreen, Colorado Posts: 454	Re: What would you do? Tricia, Your description of how you had to be your own advocate reminded me that we can NEVER stop being our best advocate. I encourage you to demand the PET scan. (not a Dr. so any other testing technique) Take EVERY step possible to rule out (or detect) a cancer met. Why would you not? Save time? I would bet that you would agree that a couple hours is a nominal investment. Hassle for Drs? Oh my....that's their job. Concern of overreacting? Ah yea....it's my life we are talking about here. Go for it!!! Push to the point that you know in your heart you explored every test possible. I was encouraged by a sister on this board to do so and I an convinced we found my liver met much sooner than if I had been passive. I hope it is treatment related aches and pains but you have already proven you are one tough fighter and will manage regardless of outcome. Please keep us posted....Lori __________________ 2007 Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008 Feb-Complete 6 cycles- T&H- NED March - Continue - Herceptin Only April - Rads for 6 weeks 2009 Continue Herceptin - Continue NED April - Recurrance- 3 cm. Liver Met May - Cryosurgery June - November - Abraxane + Herceptin Aug - PET/CT - CTC = 0 Back to NED 2010 January - Continue NED July - Recurrance - 3 cm Liver Met CTC=1 August - Cryosurgery #2 August - November Navelbine November - Back to NED - End Navelbine 2011 Feb - Recur - 4 cm Liver Met - Same Left Lobe March Surgery it is -Couldn't get a clean margin July - Confirmed continued liver involvement August - Begin Herceptin + Tykerb October - Mixed results from H+T Add Abraxane + H + T - Nov - April 2012 January PET Scan - It's working!! April - Back to NED July - Recurrance August - Begin TDM-1 Trial (Taxol + TDM-1)