Standing on 23rd Street in Manhattan as I listened to my oncologist on the phone, I sobbed. She had called to share that my hip biopsy came back positive, confirming that less than two years after my early stage breast cancer was “cured,” I now had metastatic breast cancer (MBC).

With so much of what we hear from doctors and mainstream media focused on vigilance, early detection and cure, any other outcome feels devastating. 

And yet, in the 6 ½ years since my MBC diagnosis, I’ve realized there is so much I wish I’d known that could have made that moment a bit easier:

How much hope can exist alongside incurability. How many folks with MBC are thriving, not just surviving. How fast science and medicine are evolving. To name just a few.

Metastatic Breast Cancer Defined

Like early stage breast cancer, MBC is far from a single disease, and every time I meet a fellow thriver, there is a uniqueness to their story. At the highest level, though, the definition of MBC is consistent: when breast cancer cells have spread beyond the breast by way of blood and lymph vessels to distant sites, such as the bones, liver, lungs and/or brain. While breast cancer can recur multiple times locally and still be considered curable, it is this distant occurrence beyond the breast region that changes the vocabulary: Metastatic. Stage IV. Incurable.

I personally became obsessed with the word incurable given how focused everyone had been on curing me. What did it mean if I were suddenly incurable? When I immediately asked my oncologist, through my tears, during that initial call, she put some of my fears to rest. Incurable can still be highly treatable, she reassured me, and new treatments are coming out all the time. She even told me that some folks were already living a couple decades past MBC diagnoses, and they were diagnosed before many of the more recent advances. 

I’ve since met folks who have reached such milestones. They give me hope, and I aim to do the same for others whose diagnoses follow mine.

Understanding a MBC Diagnosis

There are different paths to a MBC diagnosis. For up to 10% of those with MBC, that is their initial diagnosis. This is called de novo and although those patients’ breast cancer still originated in the breast, it has already been found elsewhere at or around the first diagnosis. For others, like myself, MBC is a recurrence and spread of what was first diagnosed as early stage breast cancer. This can happen months, years or even decades after early stage treatment.

Something that really surprised me - and seemingly doctors, too, who aren’t sure why: up to 30% of early stage “cured” patients end up with MBC.

I joined that 30% about 2 years after my double mastectomy and ACT chemo regimen. My oncologist felt another lump beside my implant — something else I didn’t know could happen — and initial hopes it was scar tissue quickly faded when my surgeon sent me for an ultrasound and, soon after, a biopsy. Once that came back positive, a full body PET scan lit up slightly in my hip. After multiple consults, we agreed to a bone biopsy. When that came back positive, that was the moment we knew I had MBC.

But here’s something that gave me hope in that devastating moment: Years of dance classes gifted me with an incredible relationship with my body and I’d first mentioned a subtle hip pain 1.5 years earlier, about 5 months after chemo.

So my team had already scanned my hip multiple times before my MBC diagnosis.  What we later determined was cancer, we also knew was slow growing – so much so that doctors at two top cancer institutions ruled out any concern for nearly 16 months because my scans had shown no change. 

My story illuminates how challenging it is to balance vigilance and self-advocacy post-treatment with trust that one is ok - and trust in one’s medical team too. While I realize my story may sound like the latter was compromised, it wasn’t. The spot on my hip was small and not changing over time — and the pain had cleared up — so it was reasonable for it to have been dismissed, particularly given nothing else seemed off. That said, I always tell people to trust their instincts; if something doesn’t feel right, push your doctors to understand why. 

Both of my biopsies revealed my MBC matched my original cancer in ER/PR+ biology. For some, their MBC delivers an additional surprise beyond the diagnosis itself in that the cancer has mutated and shifted subtype. Like early-stage breast cancer, MBC is a single term that encompasses many subtypes – a fact that’s underreported by the media, which often likes to simplify things into simple (and scary) sound bites and single statistics.

MBC Symptoms & Treatment Options

The symptoms for MBC vary based upon where it is. Bone mets can be painful aches, lung mets can involve coughing that won’t clear up, and brain mets can yield repeated headaches. But given our baselines differ, our threshold for pain can also vary greatly, and some symptoms are vague or common, everyday occurrences. My best advice is to “know your normal” and speak up when anything deviates or persists.

If you are diagnosed with MBC, there is a good chance there are many treatments available. The options will vary based upon the type, and where it spread, but they may include systemic therapies such as chemotherapy, hormone (endocrine) therapy, targeted therapy (for specific marker or genetic mutation types, radiation, immunotherapy, antibody drug conjugate, directed therapy for bone metastasis as well as clinical trials to help prevent or slow the spread of cancer. Some treatments may use a single agent or multi-agents to help control the cancer.

There are moments when navigating these options can feel overwhelming, and it can understandably be hard to feel hope. When we spend a lifetime hearing about curability, incurable can feel like an impossible word to wrap one’s heart around. And yet, if you meet folks with MBC, you may be shocked at what our medical charts say because we look – and often feel – healthy. Alongside the scans, meds, and injections, many of us are thriving. I personally describe myself as “healthy on cancer medicine” versus sick. That’s not to say it’s easy, and even when our bodies are doing well our mental and emotional health needs are real. This is a journey, and a scary one at that. And most of us come to know loss intimately when friends we meet because of a shared diagnosis pass away, creating substantial and often complicated grief. In those moments, I remind myself of the both/and: it is both terribly tragic to see another loss in our MBC community, and in that moment my story hasn’t changed: I am still OK.

Self Care, Advocacy and MBC

One thing that’s helped me is to tell myself new research is coming out all the time, and I just need science to stay one step ahead of my body. And there is a chance I won’t personally even need it. I have been incredibly fortunate and remain, after 6 ½ years, on my first line of defense, and a friend has been on it for almost 3 years longer. While nothing guarantees things will stay the same, I choose to believe they will. And I will celebrate the milestone moments along the way. 

After having no evidence of disease (NED) for a while now, for the first time, I will have gone 13 months without a PET scan. Having initially received PET scans every 3 months, I teared up deciding, together with my doctor, I wouldn’t have one in 2024. While NED is not the same as cured, it feels like a holy grail when living with MBC. I’ve heard friends say the same about scans that are “stable.” In both cases, not everyone would make the same choice my team and I did as spacing scans out further can cause a lot of anxiety. But the scans can cause anxiety too — scanxiety is real! — so I felt fortunate to be able to make this decision. Alongside the promise that if I felt any ongoing pains sooner, I would speak up.

Speaking up is the best thing we can do, and what we are speaking up for evolves over time. Earlier this year my oncologist suggested that the next time I come in I “just” get an injection, and not see either her or her NP. At which point I started to cry and pushed back, immensely, until she agreed to what I desired: a full appointment. Without that, I wouldn’t have a manual exam, and it was during such an appointment that my local recurrence was discovered. There was no way I was giving that up, even if it made for an uncomfortably tense moment.

As I continue to advocate, I also remain hopeful that the vocabulary changes in our lifetime, that MBC shifts to mean “chronic” rather than “terminal.” In order to get there, research is critical. While only a small percentage of total breast cancer funding goes toward Stage IV, Metavivor is one organization that focuses exclusively on the MBC community through research grants,support services and advocacy. 

With the holidays fast approaching, Breast Cancer Awareness Month is already a distant memory for many. Yet, for folks like me, every month can feel like October. And while many of us are grateful for decades of Octobers that elevated awareness and raised substantial research funds, we must shift how we approach the month and beyond. Those of us who are diagnosed with MBC cannot remain a footnote in the breast cancer stories that are shared. We deserve to celebrate and advocate for ourselves, and it is especially important for those newly diagnosed with MBC to know and share the hope our stories illuminate.

For more on this topic, read 5 Self-Advocacy Tips for Navigating Metastatic Breast Cancer by Toyree Davis, Oncology Nurse Practitioner, MSN, NP.