When There's Progression With MBC

Every individual with metastatic breast cancer walks a unique and nuanced journey. Even with the same diagnosis, no two individuals will face the same path. From differing breast cancer subtypes, metastases locations, genomic or somatic mutations, and responses to treatment, it can often be cumbersome finding someone — anyone — who has the same experience with the diagnosis and treatment that you do.

My treatment for MBC started in December of 2018, after being diagnosed de novo, or stage 4, from the start. I started my first line of treatment — Ibrance and Letrozole — and underwent monthly bone infusions to strengthen my bones. The cancer stabilized and I remained this way for 18 months. And then, progression.

MBC progression

Progression is a difficult reality to face. It jolted me back to early diagnosis days when everything felt hard, new, uncertain, and scary. But, I found my footing, and my oncologist and second-opinion oncologist both agreed on my next line of treatment. They also found a somatic mutation —the ESR1 mutation — which created treatment resistance in my hormone-positive cancer subtype. Even still, we forged ahead.

Second and third line treatment

My second line of treatment — Afinitor and faslodex injections — failed quickly. My oncologist questioned if it even worked at all, to begin with.  My tumor markers increased every single month since the initial point of progression and my 3-month scans verified the truth: more cancer growth in several bones.

We quickly regrouped and forged ahead (again) with my third line of treatment. But in doing so, the confusion, loneliness, and concern set in. Is this the beginning of the end?  Why didn’t this treatment line work? Why do some individuals have great success on their first-line or even second-line of treatment for many years? I was facing my two-year “cancerversary” and starting my third line of treatment - Xeloda.  This oral chemotherapy pill was supposed to do the trick.  Instead of looking at targeted therapies, this oral chemotherapy was to knock out the cancer cells.

But it did not.

Tumor markers

My tumor markers consistently continued rising, and my 3-month scans showed even more progression in my bones. This was not a surprise to me, however, the scan results told the story I was already feeling. The bone pain intensified gradually with each passing day. Looking back, my body has not felt “well” since that first confirmation of progression in late 2020.

Even while cheering on friends and peers in the MBC community, lonesomeness can creep in. While many receive “clear scan” results and find the cancer has stabilized, or even better—become NED or NEAD (no evidence of disease or no evidence of active disease), my path has looked gravely different.

• I am the MBC patient with worsening progression, confirmed through scans, every three months.
• I am the MBC patient who has not had a stable period of care for a long time.
• I am the MBC patient who has not (yet) reached NED or NEAD.
• I am the MBC patient who is scared and concerned yet also staying positive that maybe the fourth line or fifth line of treatment will be the charm.

If this is you too — the MBC path with progression — you are not alone. I see you and am with you. The MBC community is here for you. Here’s to the next treatment line being what we need!

Editor’s Note: We are extremely saddened to say that on April 3, 2023, Amanda passed away. Amanda’s advocacy efforts and writing continue to reach many. She will be deeply missed.