I finished radiation almost a month ago and in most circumstances this should be the end of my journey. I should be moving onto recovery and survivorship, but this is not the end for me.
My tumor still showed active cancer cells at removal (during my mastectomy). One would think that merely removing it would eliminate it from my body, however that’s not how triple negative breast cancer works. The tumor actually sheds cancer cells into the bloodstream. In theory, chemotherapy should have killed all the cancer (triple negative typically responds really well to chemo), however I did not have what they call a “complete response” (cancer all gone). As a result, there is not way for them to know if the cancer is actually all gone.
So, my cancer is maybe not gone. Yet, maybe it is. Historically there’s no way of knowing until is shows up somewhere else.
Triple negative breast cancer is notorious for metastasizing in places like the lung, liver, brain, or bone – usually in the first five years. Because the chemo didn’t kill all the cancer in my tumor it’s possible that it didn’t kill all of it floating in my blood either. That means I could still have cancer floating in my bloodstream looking for an organ to hook up with. The normal treatment course at this point is symptom management and regular check-ups. No regular scanning protocol, no standard next steps. Ya’ll know that’s not good enough for me.
I’ve decided to enter a clinical trial for triple negative breast cancer patients with residual disease (active cancer cells in surgery biopsy). The trial will test my blood to determine if I have cancer cells circulating in my blood, called ctDNA (circulating tumor DNA) . If I am positive for ctDNA, they will genome sequence my tumor to determine the genetic mutation that caused the cancer. If I have one of the genomic markers that has a targeted treatment, I will receive that treatment (chemo, immunotherapy, or a mix). If I do not have one of the known markers with a targeted treatment, I will receive the “standard of care” or a chemo pill called Xeloda that I’ll take for 6-months. If I test negative for ctDNA, I’ll receive the standard of care (Xeloda), as well.
Hopefully, whatever treatment I receive would eliminate any remaining ctDNA in my blood, preventing it from metastasizing. A best-case outcome is that I am negative for ctDNA. Fire up your prayers, warriors.
I’ll do my bloodwork this coming Friday and should have results in three weeks. Radiation pushed my reconstructive surgery back to mid-summer, so I’ll be living with tissue expanders until then. On the surface that doesn’t sound that bad, but the expanders have no “give” in them so it’s like wearing rocks under your skin. Next time you hug me, you’ll know. So for now, I get to heal my body, rest, and enjoy the holidays with family.
All-in-all I remain very positive and hopeful about my prognosis and the road that lies ahead. I obviously didn’t choose this journey, but it’s mine nonetheless. I’m determined to be joyful, learn the lessons God needs me to learn, and discover the direction He’s steering me toward. More than anything I am grateful for the jolt awake. I’ve already learned so much (that blog coming soon)…
XOXO – Jess