HER2/neu positive and no Herceptin.....any others out there

patti3796

HER2/neu positive and no Herceptin.....any others out there

patti3796

I was first dx in 2004, at that point Herceptin was still in trials and I was not eligible. Just dx with a new primary, DCIS, again not eligible for Herceptin. Both times HER2/neu positive.



This time I just finished radiation and will start Arimedex. But can not get the HER2/neu positive out of my mind. Any others not getting Herceptin?? What do your doctors say??

melster

I thought Herceptin was only given for invasive? Not for DCIS.

Kellygrl77

I'm sorry Patti I still don't know too much I just got diagnosed this year & pretty much started off stage 4 with herceptin, it's all so confusing. I guess at first they thought I would be cancer free & said would be done with chemo than when they found large spots shrinking on chemo that they couldn't test bumped it to where I am now & said now I stay on it for life since it spread elsewhere in my body & guess broke loose. Good luck, sorry I don't know.

wirdgirl118

Hi Patti! I am not sure yet if I will get Herceptin this time and I am questioning why I didn't get it back in 2005-2006. Maybe it was too "new." I'm again her-positive with the return of the DCIS and herceptin was mentioned as a possibility (BUT that was someone in my breast surgeon's office who was interpreting the biopsy report for me over the phone, it was not anyone in the onco department). I'm having an office visit with my breast surgeon on Monday and will ask for clarification including do they give herceptin for DCIS.

rozem

if you had pure DCIS they would not treat with herceptin...if you had micro-invasion of her2 positive IDC then that may change - there is a whole thread on the her2 forum about micro-invasive her2 BC.  I would PM Bessie - she is our resident expert on DCIS -

Katiez

Hi Patti are you positive it is not IDC as DCIS means that it is confined only in the breast duct? If it invades anywhere else then it becomes IDC.

wirdgirl118

Hi Rozem, a very belated thank you for the info you posted. I am four months out from the BMX and not on herceptin. Nodes were clear and it was DCIS, in both breasts. I am on neurontin, however. I hope you are doing well, and thanks again for being there.

flatpikr

Hi Patti, I had HER2+ DCIS and a small invasive less than 5mm and I also struggled with this question.  I am not getting chemo or Herceptin, just radiation and also Tamoxifen because I am also ER+.  I would say that IF your oncologist offers Herceptin, you should do it, but it isn't usually given for DCIS or very early IDC like mine.  Also check into clinical trials.

AlaskaAngel

patti3796

I never received trastuzumab. At the time I was diagnosed the trastuzumab trials had been in progress for some time and preliminary results were good, but for the most part the trials did not include or allow those whose tumors were less than 2 cm unless they had positive nodes, because they hadn't been sure how the drug would work out, and they were allowing only to those more likely to recur to participate in the trials.

I had specifically told my MO that I wanted to participate in a clinical trial. He never told me about the trials, even though I would have qualified for one of them. He never told me I was HER2 positive. After the trial results were announced, the oncology community floundered around for a year or so without talking to those of us who had completed treatment, about the question of whether or not we should be treated with trastuzumab. It was as if we didn't exist. As far as I could tell, they must have thought we were all dead. On an individual level my MO said he would Rx it for me if I wanted but that he felt it would not be useful for me. I declined treatment with it.

See my signature.