[DeenaH]

First, thank you to Courtney for telling me about this group! It's hard to find other young women with breast cancer.

Since I haven't figured out how to post my info in my signature, I'll give my basics. I am in the process of getting multiple opinions on what to do after radiation, but would love to get some input here too.

I was diagnosed with Stage IIIC locally advanced HER2+++ BC in March this year. Here is the breakdown of what happened:

March 22, 2010: Stage IIIC IDC, HER2+++, ER/PR-
March 26, 2010: Met with Surgeon at UCSF (recommendation was for neo=adjuvent chemo followed by bilateral mastectomy and radiation)
March 29, 2010: Met with local surgeon (Recommendation was for surgery first followed by chemo and radiation. I decided to do surgery first and it was scheduled for April 5)
March 30: PET/CT: Showed cancer in at least 7-8 axillary nodes filled with cancer, 2 mammory nodes and one superclavicular node. Switched to neo-adjuvent treatment due to mammory and superclavicular node involvement.
April 5: Port placement instead of bilateral mastectomy
April 9: Started chemo. 4 dose dense treatment of A/C followed by 4 dose dense treatments of Taxotere. Started weekly Herceptin with Taxotere treatments.
August 19: Finished Chemo!!!
August 24: New PET/CT showed all cancer gone from all nodes, and some uptake to the original tumor area.
September 9: Bilateral mastectomy with immediate reconstruction (implants w/ Alloderm).
September 16: Pathology report came back. 3.2cm tumor from right breast, 18/51 positive axillary nodes (levels 1 and 2 removed), granule sized cancer found in fatty tissue between levels 1 and 2. This was not news I was expecting after my PET/CT results. It was also my 40th birthday, so Happy Birthday to me!
November 1: Start radiation

Now I have to decide what to do after radiation. My surgeon thinks we would be stupid not to assume there is more cancer. He assumes there is still cancer in my inoperable nodes, and micro cells under my arm (and who knows where else). My oncologist doesn't think Herceptin alone will be enough, so we are coming up with a plan. Here is what is on the table so far:

Plan A: Add Laptinib to Herceptin after radiation if my insurance will approve it. My onc really thinks this should be our first choice, and has already started the battle with my insurance company so we'll have an approval in place long before we need to make a decision. If I do this combo, she is thinking about keeping me on it for 2 years instead of 1.

Plan B: If insurance will not approve Lapatinib, do the vaccine trial in Washington and then possibly the Naratinib trial in SF. She really doesn't want me to end up on just Herceptin for 6 months while I wait to be eligible for the Naratinib trial. I have already talked to the Dr. at UCSF and she said I qualify for it as soon as I finish Herceptin (or stop it early).

Plan C: If insurance will not approve Lapatinib AND I can't get into the vaccine trial (I already have the ball rolling on that too), finish the year of Herceptin and then start the Naritinib trial.

In the meantime, my husband and I are flying to Chicago on Sunday and will be spending the week at Cancer Treatment Centers of America to explore the idea of merging traditional medicine with holistic and nutrition. Next month I have a consultation with Dr. Slamon at UCLA. I really can't wait to see what he thinks I should do next! I will finish radiation in December, so I want to have a concrete plan in place as soon as possible.

Anyway, I'd love to know if there are any other ideas I may have missed. I'm sort of a research nut, but it's hard to even know what to look for or what questions to ask.

Thanks for reading my long story if you got this far.