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Jenna,
Sorry you are having to deal with this again. You asked for advice, and I guess you can tell where people stand on this question!
You also asked for similar experiences. I had a similar experience: initial diagnosis of DCIS, mastectomy, dirty margins, reexcision. I was not offerred chemo or rads, and at the time of my diag, they did not even test DCIS for ER/PR/Her2. Two years later, I had a recurrence to my liver. I'm not saying that would happen to you - remember, 99% of DCIS does not recur. But that was my experience. Although I prefer to look forward, I guess part of me will always wonder if things might have gone differently.
You are fortunate to have doctors willing to treat this aggressively. There is more known about this now - in fact there were several posters at San Antonio dealing with the question of how to predict which DCIS is likely to recur. I haven't unpacked any of my "stuff", but ask your oncologist about this.
A second opinion is worthwhile. In the end, you will have to make the decision based on the best information you can get. Of course I'm biased, but if it was me with my 20/20 hindsight, I'd go for confronting this aggressively.
good luck with your decision
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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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