Hello
I had a mastectomy in Aug for mainly high grade DCIS approx 5cm. Pathology found nodes clear, a few tiny areas of grade 2 invasive, each one 5mm or less. Hormone positive, HER2 negative. Felt pretty ‘lucky’ in the scheme of things as my onc strongly recommended Tamoxifen only and no need for chemo (less than 1% benefit).
As an ‘extra’ he suggested that he ask if my medical insurance would pay for the Oncotype test that is currently only done in the US and costs approx £2500. To our surprise, BUPA agreed and they sent off some of the tissue. He expected it to come back showing low or low/intermediate chance of recurrence. However,it has reported high chance, which is unexpected, plus they are reporting it now as HER2 Positive which obviously changes everything. Spoke to my Onc on phone last night and he will see me in person Wed, but it seems that the HER2 testing that they do as part of the Oncotype test is different to that done over here (I think he said ‘molecular’?) and is actually more reliable. Its possible (but unusual) to get a ‘false negative’ for HER2 over here which it seems has happened to me.
I am so cross and confused. If I was an NHS patient I would never have got this test, and so would be going about thinking I am HER2 negative without Herceptin or Chemo - Onc admitted this does occasionally happen. But on the other hand, I know that I am now going to have to make a decision about Herceptin/Chemo treatment, which I have spent 6 weeks thinking I don’t need. It’s messing with my head! I have already had one hideous mess up right at the start when I was told that the needle aspiration I had done showed node involvement - eventually it was realised (by the BCN!) that this was not the case - they were looking at results from the aspiration done to my breast and had mixed up the two! I actually got as far as a pre lim Chemo chat at the hospital unit before this was picked up and I then ‘escaped’ from chemo, but now here I am again!
Suppose I will have to wait for the Onc chat but I think I know what he will say. If chemo/Herception had been the plan from the start then I would have had time to get used to it but I feel totally messed about now, even though I do trust my Onc. Might it be worth a second opinion on the US results before deciding for sure? Thanks for listening as this has become an essay!