Confused about treatment plan for ER/PR and her2 -/+

Brightness456

Hi everyone. I've been reading like crazy and trying to understand the differences, but I'm still struggling. Originally I was told I am ER/PR negative with a score of <5 and her2 negative with the IHS, but then her2 positive with the fish analysis, with a KI67 of 96% and a tumor 7.7mm on ultrasound, but 1.2cm on MRI a week and a half later. I do not appear to have node involvement at this time.

I have since chosen a new team of doctors at an academic university hospital. They say my numbers don't add up and they plan to basically start over after my lumpectomy and SNB and the pathology from that. They did a new ultrasound and said my tumor is actually 8.something mm, nit 1.2 cm. They said MRIs after biopsy often indicate growth, but is possibly from trauma due to the biopsy causing swelling. They said the slightly larger size in the new ultrasound could potentially still be from residual trauma swelling, but they can't confirm that.

So they do not think my KI67 number is correct (apparently this number is often inaccurate and some places don't even use it). They are not convinced I'm her2+, as they wouldn't even have done the fish test based on my IHS results, and I thought (but my daughter said I'm mistaken) they weren't convinced my ER/PR numbers mean negative either. They said depending on the new pathology, I may not need chemo.

At first, I was so relieved to hear I may not need chemo because the SE scare me a lot, but then I started reading about AIs and that's scary too. I thought the doctors were saying only a lumpectomy and radiation would be needed, but now I'm not so sure. Plus, triple negative sounds scary too and maybe I'm that. Basically I'm scared and confused all over again.

Can someone explain, in easy terms, if there's a chance I'll just need the surgery and rads and what positives and negatives might mean what in terms of treatment? I know it's superficial , but I thought no chemo meant no hair loss as well as possibly no other SE, but now I'm wondering if the SE from the AIs will just mean longer to deal with SEs and will I even need them and oh, I'm just confused and scared all over again. This disease is for tough women and I don't feel very tough anymore, just weak and scared.

Thank you

NotVeryBrave

I've never felt particularly tough so totally get that!

I'm sure it must be hard to have no definitive answers from the biopsy. I'd be going crazy. As a result - no one here can probably help much since there are so many unknowns.

You'll probably just need to move forward with the lumpectomy and SNB to get the needed information. After that - you can look at the recommended options for further treatments.

Brightness456

I understand that no one can speak to my unique situation, but is it generally expected that triple neg will use AIs or is it common that I might just skip from surgery to radiation, then be done? I guess I'm starting to freak out a bit again because of the unknown. If I had an idea of what I should be researching and preparing for, it might be less stressful.

Ugh, this disease is really changing my personality for the worse. I'm sorry if I sound whiny and/or unrealistic