[chrisy]

Dear Chelee,
My heart aches for you when I read your posts. I can tell how frustrated and stressed you are, and it is definitely not helpful to feel that the doctors, in whose hands you are placing your life, are not communicating with you and giving you the answers you so desperately need. It sounds like you have sought many opinions, and are still seeking opinions. This is good, since no matter how caring your doctors may be, your outcome is more important to you than to them.
From the outside, it looks to me like you have a very unusual situation what with the missing ribs and lowered lung capacity. This certainly complicates the decision making process. It sounds from your description of your pulmonologist that he believes he is acting in your best interest, as I think the other doctors believe they are, also.
I hope that the 2nd opinion you have scheduled is with a radiation oncologist, as this seems to be the key issue - whether the extracapular invasion can be safely irradiated. It will not do you much good to have the cancer gone if you can't breathe. Perhaps this new doctor will see it differently; perhaps not. If not, you may just have to accept that you will not be able to get rads.
At some point, hopefully SOONER rather than (more) LATER, you will come to a decision about the rads. Regardless of which way this decision goes, I believe you have to move forward; you can't go back. Although you have had frustrations and delays in your treatments, that doesn't mean the treatment you have had was not effective. Remember, you have had some killer (to the cancer, that is!) chemo (TCH) even without AC. The fact that you didn't get AC may have meant you could start with Herceptin right out of the gate and with much less risk of heart toxicity.
So, don't feel like you have not had aggressive treatment, you maybe had different treatment, but TCH is a still a pretty powerful combo. It kicked butt on my liver mets. And in the interim, while you are waiting (and wading) through the decision on rads, you are STILL getting Herceptin. That's no small deal! I'm confused by your comment re not getting anti-hormonals - I thought from your very first post that your disease was ER/PR "weakly negative". Maybe I read that wrong, but if that is the case, I would think that anti-hormonals would be of less benefit to you anyway.

Anyway, dearest Chelee, it doesn't sound to me like you are anywhere near ready to "lay down and die"! You are a major fighter - you have really been assertive in challenging your doctors and seeking additional opinions. You still have another bit of input to get from your 2nd opinion, and others have possibly offered additional suggestions. My hope for you is that you can gather these opinions, then trust in your heart to make the correct decisions for you and not look back.
Nobody knows what the future holds. All we can do is decide from the choices we have before us and trust that grace will lead us to the right ones.

My prayers, as always, are with you.
Chris in Scotts Valley

"Angels come each and every moment to love and protect you"
-"Sista" Monica Parker - "All things are Possible"