Hi everyone!
I was diagnosed with Invasive Ductal Carcinoma, HER2 positive, estrogen positive breast cancer in January 2024. Biopsy on breast lump and lymph nodes all confirm cancer.
Stage 2, high grade 3. My lump was 18 mm and I had 3 lymph nodes involved with the largest two being 29mm and 12mm, with multiple tiny abnormal nodes surrounding the larger ones. I am 53 years old and post-menopausal.
I have completed chemo treatments of 4 biweekly dense dose AC = Doxorubicin (Adriamycin) and Cyclophosphamide and 3 biweekly Paclitaxel (Taxol) plus 5 Trastuzumab (Herceptin) every 3 weeks for 18 cycles. 13 cycles remaining. Should have been 4 Paclitaxel however the last cycle was dropped because of heart side effects that landed me in hospital for a week.
I had a lumpectomy and full lymph node dissection last week and recovering well without issues. Surgeon called me to tell me that my pathology report came back with a pathologic complete response to chemo!
Per the pathology report, my original breast tumor could not be found, it was all normal breast tissue so no margins could be measured and a total of 12 lymph nodes were removed including the 3 large ones that were originally confirmed as cancer. All were clear and normal! There was some scarring on a couple nodes which he thinks might have been from the chemo.
They did find a 24mm area of dcis or pre-cancer, which surgeon is not worried about because he took it all out with a 5 mm margin. As of my surgery date, I am essentially cancer free!
I am so happy and relieved to hear this news, I am jumping for joy! But, although I am happy, I do know that it can still come back with a vengeance as I am HER2 positive, so I still need to be vigilant these next few years.
My oncologist says that I will continue with the Herceptin for the HER2 positive for another 14 cycles and continue with the planned radiation to mop up any loose cancer cells that may be running around undetected, BUT I do NOT need the hormone blockers any longer. The original plan was to go on Arimidex for 5 years as I was also estrogen positive and post menopausal.
He said it was up to me to make the decision to proceed with it or not. I am to let him know what I want to do on the next visit.
This scares me…how the hell do I know if I should or shouldn’t…I can’t even decide what I want for dinner most days!
I do want to throw everything at it for sure, especially if it helps reduce recurrence. So maybe I will just proceed with it, even if I can get a couple years in and not the whole 5 years. Some is better than nothing I suppose.
Anybody else have a complete response to chemo and then had treatment changes? Did anyone not proceed with hormone blockers? How did it turn out?
Is it correct that no margins can be measured if tumor is now normal breast tissue and can’t be found? And if there is no tumor and no cancer, then am I still considered HER2 positive? Do I still treat the HER2?
If lymph nodes are normal and do not show cancer, am I still stage 2 with lymph node involvement? Or because they only found dcis pre-cancer, am I considered stage 0?
If I had a full lymph node dissection (surgeon says he took all nodes from level 1 and 2) then how can I have a total of 12 lymph nodes. Don’t people usually have 30 or 40??? I think it is odd I only had 12. Could the surgeon or the pathologist have missed any?
What is the average timeframe for a recurrence of HER2 positive cancer?
I will be asking both my surgeon and oncologist these same questions on my next appointments however I thought I would ask here as well.
Sending positive vibes to all! Take care!
