Hello to all,
I am new to this site, and am trying to figure out the chronological order of posts. I see that there are posts from 2012, with responses from 2016. So, please bear with me while I get acquainted.
In October 2011, I was diagnosed with Stage 1cN0M0 grade 3 triple negative breast cancer of the left breast. My sentinel node biopsy was negative, and my treatment regimen consisted of a lumpectomy, followed by brachytherapy radiation, and then 4 rounds of Taxotere/Cytoxan. I remained disease free until this year. After receiving injections of Prolia, for osteoporosis, I began having pain in my hips and thighs (bone) in fall 2015. When I saw my Oncologist for my 6-month routine exam in June 2016, he ordered a PET/CT scan to rule out bone mets. The PET/CT scan was negative for bone mets, which we’ve decided was a side effect from the Prolia, but it did show 5 FDG highlighted lymph nodes – 1 small axillary node, 3 subpectoral nodes, and 1 subcarinal node (right hilar area). The largest subpectoral node biopsy confirmed grade 3 TNBC in July 2016. There was much discussion regarding the one subcarinal/hilar node ~ whether to attempt biopsy to confirm malignancy vs a false positive (inflammation) of the node per PET/CT scan, but it was determined that it would be too aggressive to get to the node to biopsy. But, because they are assuming this subcarinal/hilar node is malignant, they have staged me at 4, because it is on the opposite side of the other nodes, and the breast where my original breast cancer was. So, my official diagnosis is Stage IV Regionally Metastatic Recurrent Triple Negative Breast Cancer.
A clinical trial was discussed, but my Oncologist wanted me to be available for radiation immediately following chemotherapy, so we decided on 4 rounds of Adriamycin/Cytoxan, which began in August. I had my last (hopefully) of 4 rounds on November 2nd. On November 18th, I will have a PET/CT scan to see if the AC has worked, and implement a plan from there. I trust and like my Medical Oncologist, but have decided that I would like to get a 2nd opinion from a respected Breast Oncology program, and have scheduled an appointment at the Jacksonville Mayo Clinic in December. I feel like I have nothing to lose, and everything to gain at this point in time.
As a retired nurse (Pediatrics), I am great at researching and understanding much of the jargon, study outcomes, and journal articles that I have read. In the past 5 years, I feel like I’ve become a reluctant expert when it comes to TNBC. Stage 4 is extremely frightening, and since it is TNBC, even more so. It seems that much less research time and funding goes towards metastatic breast cancer, but when it’s a recurrent metastatic breast cancer, even less. I’m looking forward to reading more stories on this web site. And, I hope to learn from each and every person.
Best wishes to all.