Living Three Years With Leptomeningeal Disease After Metastatic Breast Cancer

Heather Curley was 32 when she was diagnosed with stage 4 HER2-positive metastatic breast cancer in December 2022. Months after chemotherapy led to significant improvement throughout her body, an August 2023 brain MRI showed that the cancer had spread to the fluid surrounding her brain and spinal cord.

The diagnosis was leptomeningeal disease (LMD), a rare complication of advanced cancer.

Curley later became the second patient enrolled in an early-phase clinical trial at Moffitt Cancer Center investigating a dendritic cell vaccine administered into the cerebrospinal fluid. After completing treatment, scans showed complete resolution of the disease in her brain and spinal cord fluid.

On Aug. 10, 2026, Curley reached three years since her LMD diagnosis.

Curley discussed the uncertainty that came with the diagnosis, why she chose to participate in the trial and how her daughter continues to motivate her.

READ MORE: A Vaccine Grown From a Patient's Own Cells for Cancer in the Spinal Fluid

CURE: How can metastatic breast cancer lead to a leptomeningeal disease diagnosis?

Curley: In October 2022, I found a lump in my breast after work. In December, I had a mammogram and biopsy. I was only 32 when I was diagnosed with stage 4 metastatic breast cancer.

It had spread outside of my breast to multiple areas of my body. I became a patient at Moffitt Cancer Center and started chemotherapy once a week for 12 weeks.

By the end of those 12 weeks, my scans showed significant improvement. A lot of the cancer had either gone away or shrunk significantly.

My doctor had also enrolled me in a study that allowed me to receive brain MRIs. My first MRI in February 2023 was completely clear. At the end of July, my scans showed that I had almost a complete response throughout the rest of my body.

Then I had another brain MRI on Aug. 9. On Aug. 10, my oncologist called and told me the breast cancer had spread into the meninges and the fluid surrounding my brain and spinal cord.

She told me, “Do not Google this when you get off the phone.”

Of course, I Googled it.

What is it like to receive a leptomeningeal disease diagnosis?

It was a flood of emotions. I was in shock, and I didn't know what the next steps were.

I was home with my daughter, who was 3 at the time, getting ready to take her to school and then go to work. I called my job and said, “The cancer has spread, and I'm not coming in today. I don't know when or if I'm going to be able to come back.”

I had never heard of this disease before. There was so much information thrown at me in such a short period of time.

I called my husband at work, which I had never done before, and told him he needed to come home. We just cried together as a family.

Why might someone with leptomeningeal disease consider joining a clinical trial?

When I was first diagnosed with metastatic breast cancer, I decided that I would say yes to treatment options and try whatever I could to stay here as long as possible and raise my daughter.

There was definitely hesitation because the doctors couldn't tell me whether this treatment was going to work. There had only been one patient before me, and she had a different subtype of breast cancer.

It felt like I was patient 1B.

I also knew I would need my first surgery. I had never had anesthesia or surgery before, so there were a lot of unknowns.

It was scary, but I knew I wanted to try everything I could to be here with my family.

What can treatment for leptomeningeal disease involve?

I first had 10 rounds of proton radiation to my brain and spine. At the time, Moffitt didn't have a proton radiation center, so I traveled to Baltimore with my mom for treatment.

My husband stayed home with my daughter. I had never been away from her that long.

While I was there, I wrote my daughter 21 birthday cards for birthdays I thought I might not be there to see.

The radiation was extremely difficult. I left in a wheelchair. I was constantly throwing up, and my esophagus hurt so badly that I couldn't eat or swallow normally.

When I came home to Florida, I had an Ommaya reservoir placed in my skull. After that, I underwent apheresis so the researchers could collect my cells and use them to create a dendritic cell vaccine specifically for me.

Then I started the trial.

What was treatment with the dendritic cell vaccine like?

I went to Moffitt one day a week. Some treatment days lasted more than six or eight hours.

They would remove cerebrospinal fluid through the Ommaya reservoir and then administer the vaccine directly into the fluid around my brain and spinal cord.

Almost immediately afterward, I would start throwing up.

The headaches were probably the worst pain I had ever experienced. I've had migraines my entire life, and these were beyond anything I had experienced before. I also had pain radiating down my spine and between my shoulder blades.

Those side effects usually lasted around 36 hours.

My daughter would stay with my mom on treatment nights. By the next day, I could usually pick her up from daycare and be her mom again for the rest of the week.

Then the next week, I would do it all over again.

Why did you continue treatment after completing the original clinical trial schedule?

More than halfway through the trial, they realized they had four additional vaccines available for me.

My doctors told me, “You completed the trial. You don't have to do this.”

But I knew I couldn't live with the “what if?” in the back of my mind.

As difficult as those 12 weeks had been, I decided to complete four more treatments, so I ended up doing 16 weeks.

At the end, we did another brain and spine MRI, and it showed complete resolution in my brain and spinal cord fluid.

What can help someone cope with treatment for leptomeningeal disease?

My daughter.

I never thought I wanted children, and then something changed my mind. Sometimes I feel like I was given my daughter because the universe, or God, knew this was going to be my journey.

She's the reason I get up every day and continue doing this.

I just want to be here for her. I want to raise her.

What can life look like after treatment for leptomeningeal disease?

I'm still receiving treatment every other week, but I don't have the same side effects. I drive myself more than an hour to Moffitt for treatment.

Every year, I take a picture of myself throwing away one of the birthday cards I wrote for my daughter.

I don't open it. I don't read it. I don't let her see it.

I just take a picture of that card in the trash and celebrate another milestone that I got to be here for.

I never thought I would see her enter elementary school. This year, I got to be there for her first day of first grade.

I drive her to and from school. I make her lunch. I'm her primary caregiver.

I keep getting to be there for these milestones.

How can living with leptomeningeal disease lead to patient advocacy?

While my daughter is at school, I spend a lot of my time advocating for other patients with LMD.

I've connected with people through support groups and helped other women learn about the trial at Moffitt.

I recently attended a neuro-oncology conference in Boston as a patient advocate. I traveled there by myself. I was standing there while my treatment was being discussed.

For me, that was a powerful moment because I'm not only living. I'm able to be present for my family and advocate for other patients.

What should patients know after being diagnosed with leptomeningeal disease?

Find reliable information and specialists who understand the disease. I usually direct people toward the Leptomeningeal Disease Foundation because they share information about clinical trials and doctors who specialize in LMD.

I also tell people to wake up with hope and speak up for themselves. Clinical trials aren't the right decision for everyone, but research is how treatment continues to move forward. This disease is still under-researched, and we need more research and more treatment options.

How can patients advocate for themselves after a leptomeningeal disease diagnosis?

Time matters. If you feel like something isn't right, keep asking questions. Find a doctor who understands LMD or ask for another opinion. Sometimes you have to speak up for yourself, or if you're unable to, have a caregiver speak up for you.

There are researchers and institutions studying this disease, and there are treatments and clinical trials being investigated.

Don't be afraid to ask what options may be available to you.

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