Wrong HER diagnosis!

LilyGrace45

I was stunned to learn today that I am actually HER2/positive instead of negative as indicated in my breast biopsy six months ago. I had no reason to doubt my doctors and apparently they didn't feel the need for further testing. Anyway, I went through 5 months of the standard chemotherapy for IBC followed by a modified radical mastectomy a couple of weeks ago, and will begin radiation in a couple of weeks. Upon testing the larger tissue sample from surgery, the pathologists discovered I was actually HER2/positive. I should have been getting Herceptin all this time along with chemo (by the way, chemo did very little to reduce the size of my tumor. Now it makes sense why). Anyway, the doctors want to start me on Herceptin now and continue giving it to me for a year. My oncologist said that this delay doesn't really matter in terms of my progress and prognosis, but I'm not sure about that. I guess I would rest a little easier if I could get confirmation from someone that it isn't "too late" for Herceptin to help me. (I am also ER/PR positive as well.) Thanks to anyone who has some knowledge about this.

Moderators

Hi LilyGrace45-

We want to welcome you to BCO, and say that we hope you find these forums to be a source of support as you continue down this road. We're so sorry for the mix-up in your diagnosis, we know that must be incredibly frustrating and scary! Have you checked out our HER2+ forum? Lots of great info there, and members who may be able to offer support and guidance: https://community-heroku.breastcancer.org/forum/80

The Mods

sbelizabeth

LilyGrace45, I'm sorry you're enduring this worry. Keep in mind, though, that lots of women did great with their treatment and recovery before Herceptin was in the picture. Trust your MO when she/he says it's not too late.

My sister had triple-positive IBC five years ago. She is well and happy today.

LilyGrace45

Thank you, I will check it out!

LilyGrace45

Thank you! I am feeling more at ease with this already. Besides, it is what it is and I can't go back now. Just have to keep moving forward...

Elisgranny

I diagnosed myself by doing online research and went to Dr to get a biopsy to confirm. Of course, all my mammograms werenormal! I knew something was wrong. Diagnosis come back inflammatory breast cancer and petscan verified Stage IV metastasized Timmy liver. Thiis was may 5, 2017. I've been on Ibrance 125Mg 21 days on 7 days off and Femara. I had terrible pain for months prior to diagnosis but the first 3 weeks I felt wonderful. No pain, lots of energy etc. then the WBC went to 2.2 and I started running high temp. Stayed over night until temp come down