Terry Lynn Arnold, founder, The IBC Network Foundation

12/29/2025

I don’t look back to dwell. I look back to remember who I carry forward.

New Year Reflection

Maybe because it is the end of the year, and Auld Lang Syne is on my mind, I find myself more reflective than usual.

I’ve lived deeply in the cancer world for eighteen years now. For twelve of those years, I’ve been running a cancer charity.

I’m not someone who naturally looks back. I’ve seen too many losses—far too many. And no matter how many wins there are, one loss can somehow outweigh a hundred of them. Because the losses end in death. The wins are enormous, and I cling to them, because I don’t know how else to keep going without being consumed by what has been lost.

And yet, today, as I allowed myself to look back, something surprised me.
After all these years, I am still in touch with nearly all of the friends and family of the women taken by this disease. That continuity—those relationships—are a precious gift to my heart.

The women who were lost are a significant part of my why. They are woven into this work in ways that can’t be measured or easily named.
Looking forward has always been core to my nature. I tend to assess the situation, understand the problem, and move toward a solution. The women in front of me today matter deeply. They are the reason the work continues.
But the women who came before them—the ones they may never know existed—and the love of their families and friends, give me courage, strength, and resolve.

As this year closes, I don’t look back to dwell.

I look back to remember who I carry with me as I move forward.

12/24/2025

It’s nice to be up early, ahead of everyone else—although there really isn’t an “everyone else” here anymore. The way it used to be. Now it’s just my husband and me. Life has changed.

I think about the quiet before the storm—those few early-morning moments when you woke up before the kids came crashing down the hallway, racing to see what Santa had brought. Some of them will be here later today, and that brings a different kind of excitement. I’m going to have the grandchildren help me decorate the Christmas tree, and that feels like both a joy and a gentle ache.

It’s bittersweet to reflect on celebrations past, but it’s also a beautiful circle of life. At first, it was just us, building a family. That family grew, and then grew again, and now our children are out there building families of their own. Part of that circle is that they come back—to see us, to gather, to reconnect—and that feels glorious at the end of the day.

And then, once again, there is quiet.

Not the quiet before the storm this time, but a different kind of stillness—one that invites reflection. A time to think about the things we did right, the things we know we did wrong, and how we might do better going forward. A time to remember that even though our children are grown, they can still learn from our wisdom—and from our mistakes. And a time to consider how we pass on love and knowledge to our grandchildren, our friends, and our family, while also remaining open to what they teach us in return as we continue walking our way home.

Christmas has a way of reminding us—sometimes softly, sometimes firmly—that time moves whether we are paying attention or not. So love while you can. Listen while you can. Say the things that matter before the house grows quiet again.

Peace be with you, and Merry Christmas.

12/22/2025

Beyond awareness: The conversations we haven't had

For years, I would wake up early and write about everything people needed to know about inflammatory breast cancer. I wrote about the plans the IBC Network Foundation, why they mattered, and how we needed to execute them. I wrote to educate, to correct misinformation, and to make sure this disease was no longer invisible.

Now the charity is twelve years old. The plans are well formed. The growth is solid. The early years — especially the uncertainty that began in 2020 — were difficult, but we weathered them. We’re in a stable place now. And that stability has given me space to pause and ask a different question: what conversation comes next?

For a long time, my role was a myth-buster.
Have you ever heard of inflammatory breast cancer?
Did you know it’s a fast-moving breast cancer that often presents without a lump?
Did you know women under forty get breast cancer?
Did you know breast cancer doesn’t pause for pregnancy?

Those facts mattered — and they still do. But twelve years in, I feel ready to move beyond awareness alone and into deeper conversations.

This morning, I’m sitting on my porch in the fog, wrapped in a floor-length kimono-style sweater, coffee in hand, thinking about what I want to write next. I want to go deeper — and I want to hear from you.

As someone who has been through inflammatory breast cancer treatment, I know the story doesn’t end with diagnosis or even survival. There’s a generational impact that rarely gets talked about: the emotional toll on families, what happens to relationships, the strain on partners, the ways careers are disrupted while someone is simply trying to stay alive. Sometimes family members struggle with pain medications. Sometimes new addictions appear. Sometimes the damage is quiet, and sometimes it’s devastating — but it’s real.

These challenges aren’t unique to IBC. They show up across cancer, chronic illness, grief, and trauma. I’ve been thinking about this a lot lately as I read stories of loss and mental illness that echo through families over a lifetime. Grief is not limited to cancer — but cancer often exposes the cracks in systems that were already fragile.

There are many areas where we can do better. Where support falls short. Where families are left to navigate impossible situations alone. But before we can fix those things, we have to be willing to talk about them — honestly and without shame.

That’s where I want to go next.

I want to write about the hard things — and also about the joy. Because realistic hope matters. Peace matters. And joy is not naïve; it’s necessary.

So I’d like to hear from you.

What are the conversations you wish someone would start?
What experiences deserve more light?
What solutions should we be exploring together?

This feels like the right moment to listen — and to move forward, together.

12/19/2025

Despite unnecessary hardships, we got the funding done!
The IBC Network Foundation Inflammingo Flamingo Day Foundation

12/18/2025

I'm hoping to give you a closer inside look to what we're doing, and it's going to be a really big year in 2026!

12/18/2025

She would love to talk to some of y'all!
The IBC Network Foundation

12/18/2025

The Head Trip That Is the San Antonio Breast Cancer Symposium

This may seem like an odd way to begin a reflection on my experience at the San Antonio Breast Cancer Symposium, but “head trip” is honestly the best way I know how to describe it.

Every December, the Henry B. González Convention Center—so large it spans multiple city blocks in downtown San Antonio—fills with roughly 10,000–12,000 medical oncologists, nurses, researchers, and specialists focused on breast cancer. They come to learn the latest treatment models, attend lectures, share best practices, and engage with pharmaceutical companies to better understand emerging therapies and how they can best serve patients.

What I didn’t know the first time I walked through those doors is that even in places this large, this technical, and this intimidating, a patient advocate can still make a meaningful impact.
That’s not even counting the thousands of research posters presented throughout the conference, each with a researcher standing beside it, ready to explain why their work matters. As if that weren’t enough, the days often end with educational dinners hosted by pharmaceutical companies, where caregivers continue deeper discussions and earn continuing education credits. The conference days begin around 7 a.m. and often does not end until 10 p.m. It’s not unusual to log 20,000 steps a day.

My role at this conference is as a patient advocate.

I vividly remember attending for the first time—alone. I walked into that massive building and saw wave after wave of people with deep expertise, all there to share knowledge and, as they often say, “move the needle forward” in breast cancer care. It was overwhelming—so overwhelming that I found a quiet corner of the hall and cried.

Part of that was physical. I had a torn meniscus and desperately needed knee surgery; the walking was brutal. But that pain was really just a cover for something deeper—the sheer magnitude of where I was and what I was witnessing.

Eventually, I dried my tears and told myself two things: I would learn what I could, and I would come back. And when I came back, I would bring people with me. We would find a way for the IBC Network Foundation to be part of something this important.

And that’s exactly what happened.

I kept returning. I kept meeting with physicians and researchers. And I learned that inflammatory breast cancer had never been presented from the main stage in the history of the conference. I lobbied for a smaller, more informal conversation and was granted that opportunity. Then, three years ago—due in part to my advocacy and the growing efforts of others in the medical community—inflammatory breast cancer was finally presented from the main stage.

I was fortunate to be invited to participate on that panel, alongside another patient advocate, Naomi John, chair of the IBC Network Foundation in the UK.

I come back to one idea again and again: bringing people with me.
This year, in addition to the volunteers staffing the IBC Network Foundation booth—something we have now done for 11 years to educate about inflammatory breast cancer—I brought Danielle Cameron, who is the founder of the IBC Network Foundation in Canada. I showed her, and our volunteers, the tangible progress we’ve made.

One example is what we’ve observed while monitoring interactions at our booth. When we first began, many doctors would tell us honestly that they had heard of inflammatory breast cancer, but didn’t really know much about it. Over time, that response has shifted. Now, I often hear, “Yes, I’m very familiar,” followed by them taking our materials to share with their teams back home.
That shift matters.

But this is where the head trip really comes in.

When someone takes our information, it can feel like education has happened—but it hasn’t. What we’ve really done is open a door. Opening the door is important, but impact comes from what happens after someone walks through it. The question becomes: how do we move from initial contact, to familiarity, to deeper conversations that build true mastery—conversations that meaningfully change clinical practice?

It has taken twelve years to move the needle this far. Now I want to move it to a different level—not just familiarity, but mastery. That is a fight I intend to continue. And for the first time, I can genuinely see a path forward that feels achievable.

Something else significant happened this year.

For the first time, the IBC Network Foundation sponsored young researchers through a new program offered by the San Antonio Breast Cancer Symposium in collaboration with the American Association for Cancer Research (AACR). We awarded five grants to early-career researchers, enabling them to travel to San Antonio and present their work.

This kind of opportunity is critical to a young researcher’s career. Standing beside their posters, watching them engage with senior physicians, and witnessing the next generation of medicine take shape was phenomenal.

And again—it was a head trip.

It’s a head trip to walk into a building that massive. To be labeled a “vendor,” and then watch 11,000 people flood the floor when the doors open. It’s surreal. It’s overwhelming.

But I’m not crying anymore.

I didn’t stop being overwhelmed—I just learned how to stand in it.
I know we’ve made a meaningful mark, and I know there is much more to do. We are the only charity I know of actively promoting the new ICD code for inflammatory breast cancer, and we were able to share that information widely at this conference. We had global conversations with researchers about how we move forward together.

The head trip isn’t just the scale of the place—it’s realizing that you can feel insignificant and still be consequential.

I’ll end this reflection by pointing to a photo I’m sharing—of the advocates who stood with me at the San Antonio Breast Cancer Symposium. Years ago, standing alone and overwhelmed, I told myself I’d be back. I said I’d bring people with me.

And here we are.

I’m incredibly grateful. And I’ve learned that even in the most surreal, expert-driven spaces, showing up consistently—and bringing others with you—can make the difference you seek.

12/17/2025

I was celebrating yesterday and it was worth a celebration but reality is harsh.

Some good news — and a reminder of why it matters.
$72,176.34.

That’s the amount The IBC Network Foundation needs to cross a major milestone: nearly $2 million funded in inflammatory breast cancer research.

For a twelve-year-old, grassroots organization—built largely twenty dollars at a time—that number matters. A lot.

I’m especially proud because we know our funding works. In several cases, research supported by The IBC Network Foundation with early “seed” grants later went on to secure millions in government funding, including one project that grew into $2.8 million in support. Early investment creates momentum. It gives researchers the chance to pursue big, life-changing science.

But almost immediately after sharing this milestone, messages began arriving from women still struggling—waiting for diagnosis, running into insurance barriers, or being told they’re out of options.
That’s the tension of this work: celebration and urgency exist side by side.

I’m grateful—for every donor, every researcher, every step forward. But I also know the work isn’t done. Milestones aren’t the destination. They’re fuel.

Until inflammatory breast cancer is no longer stealing time from women’s lives, we keep going.

Hope always—even when it comes through tears.

12/17/2025

72,176.34

Do you know what this number means?Watch the video and you'll understand! The IBC Network Foundation

Do you know the significance of this number?
Let me tell you!

12/15/2025

Why yes I have.
The Ongoing Lymphedema Journey - The IBC Network Foundation

Terry Arnold, founder of The IBC Network Foundation has logged her journey with lymphedema and we compiled it here in on article.