When people talk about fighting cancer, they often speak in terms of courage, strength, and resilience. But one word I wish we talked about more—especially in the beginning—is self-advocacy. Because before I could even begin to face metastatic breast cancer, I had to fight just to be taken seriously.
Like many others, my story didn’t start with a dramatic diagnosis. It started with a quiet, nagging feeling that something wasn’t quite right.
I noticed some strange discharge from my nipple — subtle, but persistent. At first I thought it was because I was breastfeeding but the colour didn’t sit right. I booked an appointment with my GP.
At that first visit, I was reassured that it was likely hormonal. Nothing to worry about. But the symptoms didn’t go away—and neither did the sense that something was off.
So I went back.
Again, I was told it was probably nothing serious.
The third time, I firmly pushed for a referral to the breast clinic. I didn’t want to be pushy, but I also knew something wasn’t right. I had to put aside the fear of being labelled “difficult” and insist on further investigation.
When I finally got to the breast clinic, I hoped for answers. But again, I was told it was probably related to breastfeeding. “These kinds of changes are normal,” they said. But I knew they weren’t normal—for me. I hadn’t felt this before. I was an experienced breastfeeder having fed both my children for over two years each. Something was different.
I went home, again, without answers but still a feeling something wasn’t right
Still, I didn’t stop. I kept pushing and asked for a second appointment. I saw a different consultant this time and she listened and agreed to a mammogram and an ultrasound. I will be eternally grateful to the second consultant for listening.
Both the mammogram and ultrasound came up clear. Diagnosis was infected milk glands and they offered an operation to remove them.
A Life-Altering Diagnosis
My operation revealed something suspicious, and from there, things moved quickly. Further tests confirmed what I’d feared: breast cancer. It has taken just over 13 months to reach this diagnosis.
Soon after came a mastectomy and lymph node removal—major surgery to remove the cancer from my breast and surrounding tissue. I was incredibly worried about spreading as it had taken a while to get a diagnosis. Despite already having lymph node involvement, a CT scan to check for spread was not routinely offered. I had to push for it.
It’s a good thing I did—because the scan revealed something no one had expected: the cancer had already spread to my spine.
Living With Metastatic Breast Cancer
Being told you have metastatic breast cancer—cancer that has spread beyond the breast and lymph nodes—is unlike anything else. It shifts your world in an instant.
Instead of a clear treatment path with a beginning and end, you’re thrown into ongoing, lifelong care. Treatments become a part of your regular life. You start learning new terms like “systemic therapy” and “bone mets.” You begin navigating a future that’s filled with uncertainty—but also determination.
And through it all, I kept coming back to the same thought: What if I hadn’t pushed for that operation? What if I hadn’t insisted on the CT scan?
Would I even know my cancer had spread? Would I be receiving the treatment I need now?
As part of trying to understand my diagnosis and protect my family, I asked about genetic testing. Initially, it wasn’t something that was offered to me outright—I had to push for it.
Eventually, I was tested, and the results came back: I carry a faulty ATM gene. Learning this was huge—not just for me, but for my family members, who could now also get tested and be more proactive with their own health.
Once again, I had to advocate for something that should have been part of the conversation from the start.
Knowing I had a genetic predisposition changed everything. I brought up the idea of a second mastectomy—a preventative step to reduce future risk. It wasn’t something that was initially on the table, and I had to make the case for it.
But I knew I couldn’t sit with the fear of what could happen down the line. I needed to feel like I was doing everything I could. Eventually, after pushing for that option, I had the second mastectomy. It wasn’t easy, but it gave me a sense of control and peace that I desperately needed.
Despite the rocky start, I want to be clear: my oncologist and my secondary breast care nurse have been incredible. They listen. They take my concerns seriously. They never make me feel like I’m overreacting or imagining things.
That support makes all the difference. When you’re living with metastatic breast cancer, you need a team that not only treats the disease—but treats you like a person.
They’ve helped me feel empowered in my decisions. They’ve respected my voice. That kind of care is everything.
What Self-Advocacy Really Looks Like
Self-advocacy isn’t always loud. Sometimes, it’s quietly returning to your GP for the third time. Sometimes it’s saying, “No, I need to be seen again,” even when you feel like you’re being difficult. It’s asking for tests that haven’t been offered. It’s questioning the plan, pushing for genetic testing, or choosing preventative surgery.
It’s about knowing your own body, trusting your instincts, and refusing to be silenced.
Looking back, I wish I had known how common it is to be dismissed—especially when you’re younger, breastfeeding, or don’t “fit the profile” of someone with cancer. I wish I’d known that it’s okay to push back. That you’re allowed to ask questions. That you’re allowed to ask for more.
If you’re reading this and something doesn’t feel right—please don’t wait. Please don’t doubt yourself. Push if you need to. Ask again. Get a second opinion.
You know your body. Don’t let anyone make you feel like you don’t.
Tips for Advocating for Yourself
- Keep notes – Record symptoms, dates, and what doctors have said.
- Bring someone with you – A second pair of ears can catch what you miss.
- Ask every question you need to – You deserve answers that make sense to you.
- Request copies of all your scans, test results, and reports.
- Follow your instincts – You are the expert on your own body.
- Push, even when it’s uncomfortable – Especially when it’s uncomfortable.
Raising Our Voices
There’s strength in numbers. When we share our stories—especially the hard, frustrating, dismissed parts—we give others the courage to speak up too. We show the cracks in the system, and we demand better.
Metastatic breast cancer doesn’t just affect the body—it changes your whole life. And the journey is made harder when you’re not listened to.
But the more we talk about it, the more we push for change—not just for ourselves, but for everyone coming after us.
In the End
Living with metastatic breast cancer has changed every part of my life. But I’m still here. I’m still showing up for every scan, every appointment, every moment. I’m still advocating—for my care, my choices, and my peace of mind.
To anyone out there going through a similar journey: You are not being difficult. You are not overreacting. You are being brave.
And your voice? It’s powerful. Use it. Keep using it. It could save your life.
Sara