ER-/PR-/Her2+ Rare??

I have hormone negative HER2+...I won’t know how the chemo is working until I’m done with all 6 infusions...but I think I can feel the tumors getting smaller.

There's a ton of us who are hormone negative and HER2+. I'm not sure why your doc considers this rare. Try searching the HER2 threads on this site. Most of of us are considered lucky because there are so many new treatments out there for HER2. I'm more than 5 years past my last treatments and feeling great. I'm not happy about the lingering neuropathy, but I walk 4 miles a day and do pretty much whatever I want.

My original diagnosis was for DCIS - hormone negative. They don't check for HER2 with DCIS, but I did have a BMX. Two years later I found a lump by my collar bone. Turned out to be IDC and HER2+ I had neo-adjuvant chemo TCHP, ALND surgery, more chemo - AC this time, radiation and herceptin for the rest of a year.

Looks like you have a mastectomy coming up. Good luck. Will you have radiation?

I just finished my year of Herceptin. My mammogram and ultrasound was clear except for a very small remaining bit of a seroma from my lumpectomy. I know that there seems to be more HR+ and HR+/HER-2+ people who post here.

Hi, so sorry you have to be back here, but you can see that you have company in the ER-/RE-/HER2+ world. I was diagnosed at the every end of February. Finished 12 weeks of weekly Taxol last week -- not fun, but more manageable than I had feared. 4 weeks of radiation starting at the end of this month; Herceptin every three weeks through May. I take a lot of inspiration from the many encouraging stories on these boards and in the HER2+ thread linked above.

hi UnrealTarHeel- Congrats on making it through the 12 weeks! I hope you are doing ok. I did not really like radiation therapy, I had to hold my breath and was scared that I would mess it up somehow.

Hi, I have ILC, ER-/PR-, HER2+. I have also been trying to find more info but it seems to be very rare. I was dx on March 16, 2020. I immediately started chemo. I finish this week and then will have a double mastectomy on Sept 18th. Looking to see if anyone else had chemo first, then surgery. If so, did you require chemo again after surgery??

Joan, I've read that only 4 percent of breast cancers are hormone negative/HER2+, and ILC would be a smaller subset of that. With HER2+ cancers, the current standard of care is chemo first. In my case, I achieved a pCR, so no chemo was required after surgery, although the current standard of care if you're HER2+ and there is some residual cancer at the time of surgery, they give you Kadcyla, which I think of as a "smart bomb" chemo--the Herceptin (or Trastuzimab) takes chemo directly to the remaining cancer. This coming Thursday is the two year year anniversary of my diagnosis and at that point, the unknowns were the hardest part. I will finish up active treatment in November (Nerlynx).

Here’s a pie graph -

We are rare group indeed!

LOL - I guess it is old timers posting time.

I was diagnosed stage 1 IDC, ER/PR-, HER2+ in November 2006.

I had bilateral mastectomies (one was a simple to stay even because I was so over endowed it was uncomfortable being lopsided.

Treat was 4 AC followed by one year herceptin.

I have been in remission for thirteen years (time from last herceptin treatment).