Estrogen Level Change

A little different but I went from HER2+ before surgery to HER2- after surgery. Sometimes tumors are "heterogeneous." Or the DCIS involved has different characteristics than the IDC. Did you have an Oncotype done before surgery (Now with ER- they won't do one....)

You can get a second opinion, have your specimens sent to the second opinion, and even ask for a request. I got 4 opinions. The last one retested and I finally felt more certainty. I got to know all the different blocks of specimens from my surgery and which ones were best to test!!!

These differences in tests are hard because they affect treatment choices.

The Onctotype test was done with tissue from the surgery. They said 2 weeks for results. Mine took 4 because it came back so high, they sent it to a different lab to see if it came back the same and it did. I’m in NY, I’m honestly thinking of going to Sloan Kettering or Roswell Park for a 2nd opinion. I asked for a PET scan and the Oncologist asked why. I said because I want one. I told her I’m like a Judge, I need to see the evidence, not just someone tells me I’m good.

Well if you are indeed triple negative, the Oncotype should not have even been done and yeah, it would come back high. How long ago was that? You have already done the chemo and radiation, so you are done with treatment, is that right? The only issue is if there is any estrogen positive cancer to treat with an anti-estrogen med like Tamoxifen or an aromatase inhibitor and it sounds like the Oncotype did not recommend that or your doctors. What was your estrogen score on the Oncotype?

I am glad you are done with chemo and radiation. Keep us posted!

If I could go to Memorial Sloan Kettering, I would do so. They are one of the best, and could help you clarify what you need to do next.

I am agreeing with @colely I would ask for another opinion at Sloan Kettering. They are a large cancer and can give you more information.
Indeed if you are triple negative, it could or should change the monitoring protocol moving forward. Also if that is true, you should know that, not be guessing.
Definitely a heterogenous cancer is more difficult to understand, but your cancer professionals should be making sure you understand.
I am glad you found connect, have you visited some of the other pages yet?

None of my doctors mentioned my tumor was heterogeneous. The folks at Oncotype did. I worried for a long time because my DCIS was probably HER2+ according to one doc. Also, I had e-cadherin loss in a lot of my tumor, which was mixed ductal and lobular, but to me it seemed there was a lot of lobular. This was also not mentioned. Lobular is its own beast, hard to find on imaging, and can spread to unusual places for breast cancer, like the abdomen.

This is all to say that none of this is as exact a science as we are led to believe and want to believe, and I am sorry @michelleholt067 that you are dealing with uncertainty as well.