26 Years with Essential Thrombocythemia (ET): From “Disorder” to Discovery

May 24th marks 26 years since I heard the words that would quietly change my life forever. Back then, they didn’t call it cancer. They called it a “blood disorder”—and somehow, that made it easier to breathe.

I didn’t know what was coming. I didn’t know how much would change. And in some ways, that was a blessing.

Because sometimes, not knowing… is the only way you get through the beginning.

Navigating the years of watch and wait

In those early years, treatment was straightforward. I started on hydroxyurea, and then eventually settled into what many of us know well: “watch and wait.” And wait I did—for nearly two decades.

For a long time, essential thrombocythemia (ET) lived quietly in the background of my life. It was something I had, but it didn’t define every decision or every day. There were fewer answers back then, but also fewer labels to carry.

The evolving landscape of cancer research

Fast forward to today, and the landscape has completely changed.

We now understand key mutations like JAK2, CALR, and MPL—discoveries that transformed how myeloproliferative neoplasms (MPNs) are diagnosed, classified, and treated. The World Health Organization (WHO) has also brought more clarity to diseases we once navigated with so many unknowns.

With that knowledge came clarity—but also a shift. What was once called a “disorder” is now recognized as a chronic blood cancer. That’s not always easy to sit with. Words matter. Labels matter.

Finding success with modern treatments

And yet, progress has brought something even more important: options and hope.

Today, I am on Pegasys (interferon), and I am grateful to say I am doing well—in both hematologic and molecular remission. That’s something I could not have imagined 26 years ago.

Living with ET for this long has taught me that this journey is not linear. It evolves, just as the science evolves. What stays constant is the resilience of this community and the determination to keep moving forward.

A message of hope for the community

If you are newly diagnosed, or somewhere in the middle of your journey, know this: the story is still being written. Treatments are improving. Understanding is deepening. And there is a real reason to have hope.

Twenty-six years later, I am still here—not because the journey was easy, but because I kept going. And if my story proves anything, it’s this: there is life beyond the diagnosis, and it can still be beautiful.

About the Author:
Joy Robb Anderson is a 26-year survivor of essential thrombocythemia (ET), an MPN advocate, and founder of the I Have an MPN blog and MPNs R Us private FB group. She was recipient of MPN Hero Award in 2024. She is passionate about supporting others navigating life with myeloproliferative neoplasms.