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Old 08-31-2008, 11:14 AM   #14
chrisy
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Location: Central Coast, CA
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Hi Pink,
Great question, as usual!

Speaking as someone who's first real interaction with medical oncologists came after a stage IV diagnosis, I'll share my thoughts.

I agree, everyone will probably get the same "standard of care" regardless of who they see. My case was a bit complicated, and I was lucky to have my REALLY GREAT local oncologist refer me to my other REALLY GREAT (and big name) oncologist.

Initially, the value for me was twofold: I got to have a pair of great doctors confirm that, at that time, the best treatment was TCH. This was the proven approach and the standard of care in my situation. So I felt very confident in that "choice". I named the 2 doctors "Dr. cautiously optimistic" and "Dr. hope" because although both doctors recommended the same treatment, Dr. Hope was the first one who actually made me feel hopeful - coming from more of a research perspective - that I might have a lot more time than the statistics would suggest. In fact, my local oncologist(s) rely on this other doctor to do the same - keep them apprised of the early info from the research side.

So, I got a very effective treatment that put me in remission and kept me there for 2 1/2 years. I loved my local oncologist, and still do.

WHEN the cancer recurred, the advantage to me of having a relationship with the "big name" doctor was that I had immediate access (and actually already had an appointment) to some promising clinical trials - first a pairing of Avastin/Tykerb which kept me stable for 8 months, then the DM1 trial. I believe having the 2 oncologists allowed me to be in the "right place at the right time" when I needed it.

I do occasionally "name drop", not to offend or impress anyone, but because I believe that the big name doctors bring a different perspective as they tend to be those who are on the cutting edge of research. They're not necessarly better doctors, their orientation is just different - they are researchers first and clinicians second.

But as for the question "we all get the same standard of care treatment", most of the time that's true. As Joan and Jean have said, it is more critical with advanced stage or more complex situations.
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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