Confused! Thought I was done!

lesliecusana

I had my f/u with MO after completion of radiation a month ago and a bit confused. Everything looked good on exam by NP she mentioned herceptin said I was boarder line and she went to go talk with MO. They both came back in the room and MO said no herceptin do to size of MI. But she said my case was odd and she wanted to present to her team. Odd meaning pathology was conflicting. I don't remember all the details but she said my DCIS was mostly lobular with necrosis and that usually is ER+ which I'm not, also the size of DCIS and high grade/her2+  she wonder if I really only had 1.1mm of invasion. So she is also asking pathology to go back and recheck my result from Nov. lumpectomy.  Also the fact that my mom is also going through treatment for what we know now is stage 3b IBC triple negative 24/25 nodes +.  I'm not quite sure what this all means. Maybe just a precaution since I can't take hormone meds! Also not sure why this wasn't addressed earlier. Any tips or ideas appreciated!

Rlsteadman

I had a similar diagnosis to you. My IDC was only 1.2 x 1.0 mm. It was with a larger area of DCIS. It was ER weakly positive, PR negative HER2 positive. I had a lumpectomy in December and radiation. The oncologists I saw said it was to small for Herceptin. They felt the side effects may be worse than the benefits. They also didn't think meds for the ER weakly positive would be of much benefit. This probably doesn't help but just wanted to say I have a similar situation and am not taking any meds. 

lesliecusana

Thanks for your reply! It does help knowing other people with similar dx. 

jhodro

I also had a similar situation and was referred to a second opinion. He felt due to multi focal invasion in multiple spots and large dcis, that in my case chemo. Made sense based on a Taxol study published in december. the TCH regimen would be too strong. So i just started my second round of taxol and herceptin. From what I read, SEs are less but I stillhave annoying   ones like acne sleeplessness and c mixed with d. Other than all that, if i take it day by day it´s mangeable. I also lost my hair around day 21, which was unlikely, but did happen. I was told throughtout surgeries that i would go straght to rads until the last moment and it threw me. I am dealing day by day. Best of luck to you too! Let me know how it goes!!