From “Cured” to "Incurable"
Advocating for myself
In October 2011, I was diagnosed with Stage I TNBC. Even though I had no family history of breast cancer, I had discovered a small, tender lump in my left breast 3 years prior to my diagnosis. My Gynecologist dismissed it as anything to be concerned about, my annual mammograms were basically normal. Besides, “breast cancer isn’t painful,” she told me every year when I would state my concerns about this very tender little hard knot. And, “you’re feeling your ribs, I don’t feel anything.” So, my fears were dismissed. Returning for an annual mammogram, in September 2011, I once again pointed out this tender little lump to my Gynecologist with the same responses, and “we’ll see what your mammogram shows.” Off I went, feeling reassured yet again.
But, during the mammogram, I asked the technician to focus on this lump. It was located in the upper, inner quadrant of my left breast, a difficult area to image because of its proximity to the sternum and ribs. To be anatomically precise, this lump was located between the 2nd & 3rd rib, above the costal cartilage. Positioning me so that this area could be viewed took a lot of time and effort, not to mention a great deal of discomfort from the equipment pushing against my inner rib cage & sternum area. But, after she did the first image, the technician shouted, “there it is! I see it.” I had been validated! This wasn’t just my imagination at play. But, now what?
Treatment for TNBC
An ultrasound was ordered, then a core needle biopsy confirmed the bad news, it was triple-negative breast cancer. A PET scan confirmed that it was Stage Ic. My treatment consisted of a lumpectomy, brachytherapy radiation (done via a catheter inserted into the lumpectomy bed), and 4 rounds of Taxotere/Cytoxan chemotherapy. My sentinel node biopsy was negative for cancer cells. By March 2012, I was pronounced “cancer-free!” Knowing that my TNBC was highly aggressive, and the recurrence rate for TNBC was high, especially in the first 2-3 years from diagnosis. I slowly and cautiously resumed life in my new normal. By 4 years out, I was ready to celebrate the end of my journey with breast cancer!
Things still didn't feel right
While seeing my Oncologist for a routine annual appointment in June 2016, I complained of bone and joint pain. Despite telling me that he didn’t expect it to show anything, because I “looked so healthy and had perfect labs and normal tumor markers for almost 5 years,” he would order a PET/CT scan to rule out recurrence of my disease. We were all shocked when the scan showed 4 hypermetabolic nodes lighting up, 3 on the left side, my original breast cancer side, in the subpectoral and axillary region ~ but one distant node on the right side. A subcarinal/hilar node on my right side was glowing brightly in the scan. Since this right-sided node was in an extremely difficult place to biopsy, my Oncologist opted to see if it resolved with treatment. Assuming it was malignant, I was now Stage IV, and a subpectoral node biopsy confirmed that it was a recurrence of triple-negative breast cancer. Once again, I was back in the infusion room getting Adriamycin/Cytoxan chemotherapy, followed by external beam radiation. After my 4th round of AC chemo, my Oncologist ordered a PET/CT to check my response to treatment ~ I was NED (No evidence of disease)!! Not a trace of cancer could be seen in my scans. This answered the question about the right node in question ~ it had disappeared completely with chemotherapy, which confirmed that it was malignant.
From incurable/terminal to chronic/manageable
Unlike most of my friends who’ve been diagnosed with Stage IV triple-negative metastatic breast cancer, I have remained NED since completing my first line of treatment in 2016. As of November, I will be NED for 3 years. I am on no systemic treatment because of the lack of maintenance medications to keep my TNBC cancer at bay. But, I am NOT CURED! I do not consider myself to be “in remission” either. Nor does anyone on my Oncology team use the word “remission.” I simply have no evidence of cancer that can be seen on scans. It is simply “sleeping,” or dormant for now. Stage IV MBC is neither curable or chronic. I live from scan to scan, which is the only way to determine if my breast cancer has progressed/spread, or is no longer “sleeping.” My tumor markers are not reliable, as they’ve never fluctuated between Stage I and Stage IV.
But, although I do not consider myself “cancer-free,” in “remission,” or "cured" ~ I am grateful every day to be NED. My favorite phrase is to say that I am “dancing with NED.” I hope that continues for many years, but understand the possibility of that happening is about 1 - 3%. I remain realistically hopeful, and while I am enjoying good health, I dedicate my time to advocating for more research for metastatic breast cancer, attending MBC/BC conferences to continue learning about this disease, and offer support to my MBC friends through social media and as a volunteer for the Living Beyond Breast Cancer Peer-Peer Matched Helpline. I’ve lost many friends to this disease and my goal is to continue raising my advocate voice for those who no longer have one. Only through research will we be able to transition MBC from incurable/terminal to chronic and manageable.
Caregivers: Do you practice self-care?