A 41 year-old woman's blood cancer was misdiagnosed as carpal tunnel because of her burning hand pain

• A former lingerie league football player was diagnosed with a terminal blood cancer at age 41.
• She says doctors missed the first signs of multiple myeloma, which showed up in her urine years earlier.

The first thing Roban Lampkin noticed was the bubbles. Small, compact constellations in her urine, on the surface of the toilet water.

"I'd never seen that in my life," she told Insider. "Bubbles that stayed on the rim."

Her doctor initially suggested it might be some kind of protein in her pee, which can be a warning sign for kidney damage, but the doctor didn't think too much of it.

As years passed, Lampkin started developing a wide array of health issues, some of which were hard to dismiss.

Bruises. Red spots. Swollen ankles. A repulsion to alcohol. And fatigue — near constant fatigue.

At one point in the fall of 2019, her tongue and the insides of her cheeks became so swollen with sores it was hard to speak. Maybe she'd just been biting her tongue too much, she thought.

There was searing lower back pain, too. It got so intense Lampkin couldn't get out of bed in the morning unless she step-by-step walked her body up, up, up into an upright position.

She felt exhausted. "I'm working, I'm dancing, I'm going to school," she remembered. "I'm doing too much," she told herself.

Finally, Lampkin developed neuropathy, severe burning sensations in her hands and arms that were so acute they "woke me up screaming in the middle of the night." That's when she started visiting urgent care and the emergency room, desperate for answers.

Her burning hands were dismissed as carpal tunnel

At first, doctors dismissed Lampkin's new hand pains as carpal tunnel.

"I knew that I didn't have carpal tunnel," she said. "Carpal tunnel affects millions of people — there's no way people function like this."

After more than a handful of unsuccessful doctor's visits over the course of a few weeks, Lampkin once again woke up in excruciating, burning hand pain.

That day, "I went in screaming, crying, more out of frustration" to get providers to take her concerns seriously, she said. "I had to remember the pain that I'd been in."

That's when clinicians started a weeklong barrage of tests and bloodwork. First, they discovered Lampkin's kidneys were near failure.

"I was like, 'What? I'm not here for my kidneys,'" Lampkin said. "'I'm here for my hands and my tongue.'"

After several more days of tests, Lampkin's doctors went back to the toilet for answers, the same place where her worries began. She collected all her urine for a 24-hour period, and that's how doctors finally discovered that the protein that had been in her toilet for years was now a cancerous Bence-Jones protein, a hallmark sign of the blood cancer called multiple myeloma. She was 41.

Looking back, Lampkin says the signs of her disease were all "stuff that I believe most people would overlook, would not really pay that much attention to."

"Too bad that my doctor didn't either," she said.

Multiple myeloma is an uncommon cancer

Multiple myeloma is a relatively unusual cancer, accounting for less than 2% of all new cancer cases, with about 34,500 new diagnoses every year in the US. But it's also a dangerous disease, with a 5-year relative survival rate of less than 60%. There are new, investigational cancer therapies, like pricey CAR-T, which show promise in some people with multiple myeloma, but the cancer affects everyone a little differently, and a functional cure is still elusive.

Today, Lampkin, a former lingerie football league player and dancer, says her bones hurt and she's often very tired. It's frustrating, she said.

"It was such a life lesson," Lampkin said, going from working out regularly and feeling "like I was really pretty, and fit, and athletic, and I took care of my myself," into five months of chemotherapy infusions, losing her long hair, and dealing with the other side effects of cancer treatment.

"It's difficult still, but I'm getting better at it," she said.

Two years ago, Lampkin received a bone marrow transplant, and her case is considered to be in remission. She takes a small, maintenance dose of a chemotherapy drug, and is on nerve pain medication. Perhaps if she had been diagnosed sooner, her kidneys might've had less damage, but she says she doesn't like to focus too much on that now.

"I am here to get to take advantage of whatever time I have left," she said.

Lampkin has 35,000 followers on her myeloma-themed TikTok, where she regularly posts about her symptoms, and how having cancer has changed her outlook on life.

"I'm just speaking my feelings," she said. "I think people appreciate that, and they feel like it's relatable even if they don't have what I have."

Some women connect with her over shared stories of misdiagnosis or medical gaslighting. Lampkin is also working on starting a new non-profit called Myeloma Movement, which she hopes will provide funding to multiple myeloma patients, serve as an educational resource about the disease, and fund research for a cure.

Recently, she learned that her grandfather also died from some kind of blood cancer, though she's not sure it was the same one she has.

"One uncle says it was multiple myeloma, another uncle says that it was leukemia, and then my dad says he just doesn't know," Lampkin said. "People have to know what it is — they have to understand."