In December of 2022, Heather Curley was diagnosed with stage 4 metastatic breast cancer.
"It had spread outside of my breast to my axillary mammary lymph nodes, my thyroid, stomach, liver, kidney and spleen and my whole skeletal," Heather Curley told Tampa Bay 28 reporter Larissa Scott.
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She went through treatment, and thought she was in the clear until she had another MRI scan of her brain following her chemotherapy treatments.
"My doctor called me and she had expressed that this was a worst case scenario," said Curley.
That’s when she was diagnosed with leptomeningeal disease, or LMD. It’s a rare complication that happened after her breast cancer spread to her spinal fluid.
The prognosis wasn’t good.
"Two weeks untreated and four months with treatment," Curley said.
Then she joined an experimental trial at Moffitt Cancer Center with a new team of doctors, including Dr. Peter Forsyth— a neuro-oncologist and world-renowned expert in the field.
"During this conversation with Dr. Forsyth, he informed me that I would be the second person in the world to receive this type of treatment," said Curley.
That was nearly three years ago.
"I had no idea that I would make it this long. And it’s all due to Dr. Forsyth, his team, and Moffitt," said Curley.
She told Tampa Bay 28 to go from a life expectancy of a few weeks to several years later now is nothing short of miraculous.
"Not only am I still here, I’m not bedridden. I just went on a vacation with my family where we spent hours a day swimming and very active," said Curley.
She’s now in uncharted territory, since research for life with LMD is limited.
Curley still receives treatment for LMD every other week, and it’s working.
"I just want to spend my time advocating this disease," said Curley.
Her daughter, Palmer, is her motivation to fight for more time.
"She’s the reason why I wake up every morning and I fight," said Curley.
Her team at Moffit is dedicated to helping more patients with this rare complication, which is why they’re expanding treatment options with the opening of the Speros proton therapy center in Pasco County this summer.
"It makes me so hopeful," said Curley.
She wants to continue to work with even more LMD patients and be an inspiration to them— hopefully being part of finding a cure.
"I often say that this disease can’t be for nothing. I have to do something great with it," said Curley.
In the meantime, she’s making plans for the future with her daughter.
"I prayed every day to see my daughter graduate from kindergarten, which she had graduated May of 2026. I’m just, I get so emotional thinking that I’m going to be able to see her go into first grade this year. I never thought I’d have that opportunity," said Curley.
Moffitt recently received a $22.4 million grant from the U.S. Department of War to open two new trials targeting LMD.
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