help with treatment options after bilateral mastectomies

I posted this in Oncotype and Her2, but since I was so desperate a couple of days ago and posted my worries in different places, I thought I'd double post this time in order to thank everyone for all the help.

 I really can't thank you enough for all the good advice.  The discussion board has definitely given me the information and moral support I've needed to get through this.  My oncologist wants to put me on Tamoxifen only.  I asked him about the 2D6 test and he said he would find out where I can go to get it, whether my insurance will cover it, and how much it costs.  He suggested an ooph if the BRCA comes back positive.  He also said Tamox reduces your risk of ovarian cancer, which is very hard to test for.  I then spoke to my doctor at the genetics center and she told me I could have the 2D6 test done at the Mayo Clinic or have it sent to a hospital even closer.  I sure hope I am an EM!  The PM outcome is so terribly daunting.  What are your treatment options if you are a PM, I wonder?  I feel relieved to have a plan, but I really thought they would be doing more tests to see if the cancer managed to get past my lymph nodes and regular testing for recurrence.  He told me that since I was node negative, they only do testing if you have symptoms.  He also said if there was a distant recurrence, it would be stage 4 because I'm Her2 pos, 3+.  My genetic doctor asked me if I hit him for being so blunt.  That part is hard to deal with right now, but I am getting better at focusing on doing everything I can to be healthy.  Tomorrow I see my surgeon and, although I actually really liked the onc despite his bluntness, I will ask for a referral to get a second opinion.  It couldn't hurt, right??       

That sounds like very, very good advice.  Thank you.

I saw my surgeon today and he has suggested the Oncotype DX test to see if I would benefit from chemo.  He is going to discuss it with my onc.  Although my DCIS was 4.5 cm, my IDC was only .1 cm, so this is probably why the onc didn't immediately suggest chemo, but recommended Tamox.  My onc also didn't think the Oncotype test was necessary.  From reading the posts on the board, it seems that most Her2 pos, 3+ DO have chemo regardless of the tumor size or grade.  My DCIS was grade 3, but my IDC is grade 2.  Anyone out there with similar circumstances who didn't have chemo, just Tamox?        

Carolina, Bluedasher, and Orange,

Thank you so much for all your great feedback on treatment options.  It's 4 in the morning and I can't sleep thinking about all this.  I did some research on the Oncotype test and Her2+.  It does seem that the scores tend to be higher if one is Her2/neu, but that also depends on grade, size, and HR status.  I don't think it could hurt to have the test.  If, by some chance, my score happens to be low, then Tamox alone may work for me, especially since I am ER+.  Bluedasher, It appears that positive is positive, even if it's weak, but HT works better the more positive you are.  If my Oncotype test score is high, then I decide about chemo which, as Orange said, may not even be covered by my insurance.  I really appreciate all the articles, too.  Carolina, Thanks for the article and continued support.  I wish there were more info for us at this point , but it's still helpful.  and Orange, you always give me hope.  I would love to get a second opinion at the Mayo Clinic, but my insurance is limited to Indiana and I live just over the border (sigh).  I may be able to pay for it out of pocket since I have been saving my pennies, but being out of work this month and having to pay the PS upfront (still fighting that war!), I'm not sure if I can afford the appointment.  I am in the middle of a Catch 22 between the State law requiring insurance companies to pay for reconstruction and the State law dictating the guidelines of my insurance policy.  They were UNABLE to find me a PS who "participates in the network", so I found an out of network Dr. for this approved, necessary surgery and they are refusing to pay him unless he signs on to the plan.  He is refusing to do so and that is his right.  However, I am considering begging for his mercy at my appointment tomorrow since hiring a lawyer is not an option for me.  I have two sweet kids and I was saving for their college expenses (sigh sigh).  Anyone know how much an appointment at the Mayo clinic would cost?  You are all very dear.  I hope at some point soon I will be able to help others on this board.           

I received a very exciting email from the insurance company this morning and it seems as though they might actually pay up.  The PS billing gal dashed my hopes, though, and I did everything I could to keep from crying during my appointment.  I knew if I talked to the dr. about the insurance problem I was going to lose it, so I handed him a letter and asked him if he would look it over when he had time.  My left breast is swollen for unknown reasons and scabbed from a big blister, so he removed some of the saline and that has helped a bit.  He also put me on an antibiotic called Clindamycin Hcl, which has scary side effects, just in case it's an infection.  I called the insurance company and it does actually seem hopeful, but I'll believe it when I get my $5000 back!  If I do, I'm definitely going to the Mayo clinic for a second opinion.  Hopefully around Thanksgiving.  I'm going to call them tomorrow.