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Old 11-27-2006, 09:34 PM   #5
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Hi Lisa,

Sorry you had to come here, but you came to the right place. You are braver than you think - to NOT be afraid at this point would just be unnatural!

I agree, you need to at the very least get a good second opinion, and in the end find a doctor who you feel will support you and work with you.

I'm not clear, and maybe you don't have enough information yet - but it sounds like SO FAR all that is indicated is DCIS, although it is extensive.

Your onc is correct, it is not "standard protocol" to have chemo or even herceptin if the DCIS is removed, it is only DCIS, and the nodes are negative. If this is the case, however, it is critical that they look very closely for microinvasion - the standard procedure is to just look at a sampling of the tissue. Push for a thorough evaluation.

Here are a couple of recent threads related to this.

http://www.her2support.org/vbulletin...highlight=DCIS

http://www.her2support.org/vbulletin...highlight=DCIS

These threads deal specifically with the question you asked, about when/if to get further treatment of DCIS. Not to scare you, but Her2+++ is a sneaky one, and we must stay vigilant. That said, remember that 99% of DCIS does not recur after it is surgically removed, so the odds are in your favor if there is no indication of invasion in the breast or spread to the nodes.

This is the hardest time of all - the waiting for surgery and to find out what you are dealing with. Then you will be able to move forward with the next decision. Try to take it one step at a time.


Take care
Chris
__________________
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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