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
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