Metastatic Breast Cancer Advocacy: An Interview With Tia Cookie

We recently had the pleasure of interviewing editor, writer, publisher, and business owner, Tia Cooke. The incredibly accomplished Tia lives with stage IV, triple-negative breast cancer, and advocates for other people living with breast cancer every single day. Read Tia's story below and find her on Instagram here.

SocialHealthNetwork.com: Firstly, could you tell me about your diagnosis journey?

Tia: My cancer journey began in January 2017, when I was diagnosed with cervical cancer. Just four months later, in May 2017, I was diagnosed with triple-negative breast cancer. Then, in April 2019, I learned that my breast cancer had metastasized. I was now living with stage IV breast cancer.

It's been quite a journey. I've undergone surgeries, chemotherapy, clinical trials, and more procedures than I can count. I've experienced treatment successes, setbacks, and disease progression. And now, more than nine years after my first diagnosis, I'm in a place where my next treatment path isn't clear.

But here's something I think is important to understand. Cancer has been part of my life for nine years, but it hasn't been my entire life. I've traveled, fallen in love, built my businesses, served in ministry, spoken at conferences, and experienced some incredible moments. I've also cried, been afraid, gotten angry, and wondered how much more I could endure. Both sides of that story are true.

SHN.com: What does an ordinary day look like right now? How do you balance managing your health with actually living your life?

Tia: I don't know that I have an ordinary day anymore! Some days I'm working on manuscripts, designing graphics, managing business projects, or handling responsibilities for my church. Other days, I'm at medical appointments, dealing with pain, or trying to recover from a particularly difficult night. And sometimes, all of those things happen on the same day.

I'm an editor, writer, publisher, and business owner. I'm also deeply involved in my church and several ministry initiatives. Those things matter to me, and I don't want to give them up simply because I have cancer.

But my body doesn't always cooperate with my plans. I've had to learn that just because I want to do something doesn't mean I'll physically be able to do it that day. Sometimes I have to adjust my schedule, cancel plans, or stop working before I'm finished. I'm still learning that balance. I don't always get it right.

There are some days that just feel heavier. When those days show up—physically or emotionally—what helps you move through them?

First, I allow myself to acknowledge that I'm having a hard day. I don't believe I have to be positive every minute simply because I'm living with cancer. Some days hurt. Some days are frightening. And some days I'm just tired of dealing with all of it.

My faith is central to my life. I pray, and I lean on the people who genuinely love and support me. I also believe in therapy. I've been in therapy for years, and I make no apologies for taking care of my mental health.

Sometimes I talk through what I'm feeling. Sometimes I cry. Sometimes I need to be alone, read a book, or disconnect from everything for a while. And sometimes I just need to rest. I've learned that I don't have to turn every difficult day into a testimony before I've had a chance to process it.

Has sharing your story online helped you find a community?

Absolutely. Sharing my story has connected me with people I probably never would have met otherwise. I've connected with other people living with metastatic breast cancer, advocates, survivors, and people who simply want to understand what this experience is like.

I've also had opportunities to speak at conferences and participate in advocacy initiatives. One thing I've become particularly passionate about is making sure the experiences of Black women with breast cancer are represented and heard.

But I don't share only the encouraging parts of my journey. I talk about the fear, the frustration, the emotional toll, and the things people sometimes don't want to discuss. I think there's power in being willing to tell the whole story. Someone may be experiencing the very thing I'm talking about and feel less alone because I was willing to say it publicly.

What's one practical thing you've learned living with breast cancer that might help someone else on this journey?

Learn to advocate for yourself. I cannot emphasize that enough. Ask questions. If you don't understand an answer, ask again. If something doesn't feel right, speak up. If you need another opinion, seek one.

I've learned that being an active participant in my medical care matters. My doctors have medical expertise, but I'm the person living in this body every day. My experiences, symptoms, concerns, and priorities deserve to be part of the conversation. And don't be intimidated by someone's credentials. You can respect your medical team while still asking difficult questions.

Looking back on the earlier days of your diagnosis, are there any questions you wish you had asked earlier on?

I wish I'd asked more questions about the long-term impact of treatment, particularly how it might affect my quality of life. When you're first diagnosed, so much of your attention goes toward treating the cancer. You're trying to understand the diagnosis, the treatment plan, and what happens next. But cancer treatment can affect so many other parts of your life.

I also wish I'd understood earlier how important it was to ask about every available option, including clinical trials and second opinions. Looking back, I would have wanted a fuller understanding of not only what each treatment was intended to accomplish, but also what it might mean for my life outside the hospital.
Doctor's appointments can be a lot—a lot of information, emotions, decisions.

What advice would you give someone so they feel more prepared going in?

Write your questions down before your appointment. It's easy to forget what you wanted to ask once you're sitting in that room, especially if you receive unexpected news.

Keep track of symptoms, changes, and concerns between visits. If possible, bring someone you trust who can listen, take notes, and help you remember what was discussed.

And don't leave pretending you understand something when you don't. Ask your doctor to explain it again in language you understand. Ask about the purpose of a treatment, possible side effects, alternatives, and how decisions may affect your quality of life.

You have a right to understand what's happening with your body.

If someone watching is really struggling right now—what would you say to them or want them to know?

I would want them to know they don't have to perform strength for anybody. You can have faith and still be afraid. You can be grateful to be alive and still be exhausted by what you're going through. You can love your life and still grieve the life you thought you would have. None of those feelings makes you weak.

And please don't feel pressured to make your cancer experience inspirational for other people. You're allowed to have hard days without finding a lesson in every one of them.

Find people who will listen without trying to fix every emotion you express. Get support when you need it, including professional mental health support.

Most importantly, remember that you are still a whole person. Cancer may change your circumstances, but it doesn't erase your identity, your interests, your relationships, or your right to experience joy. I'm living with a terminal diagnosis. I don't know how much time I have left, and I won't pretend that doesn't frighten me. But I'm still here. And as long as I'm here, I want to participate in my life, not just my illness.