GRAND RAPIDS, Mich. (WOOD) — A 24-year-old Grand Rapids woman says she’s fighting an extremely rare and aggressive form of cancer that only a few hundred people have ever been diagnosed with.
Aiyana Mitchell, a mother of four, has Stage 4 renal medullary carcinoma, a kidney cancer that has spread throughout her body and can’t be cured.
It took nearly a year of tests and treatments for doctors to determine Mitchell’s condition. It’s often a challenge because of how rare the disease is.
“It completely changes your life,” Mitchell told NewsNation affiliate WOOD Sunday. “They’re just trying to keep me comfortable now, this is not something that’s reversible. That’s the worst news to ever get at as a 24-year-old. My life just began.”
“You could be living a normal life and next year have Stage 4 cancer,” she added. “It’s something that will just happen in the snap of a finger.”
It all began last August. Mitchell says she was just fine, taking care of her four children, just 1, 2, 4 and 9 years old. But suddenly, she started feeling intense stomach pain that had her in and out of the hospital.
“Every time I came back, I was sicker,” she said. “I was weaker. I was eating less. I was sleeping less.”
She went through several rounds of antibiotics, emergency room and primary care visits. Doctors initially thought she had a bladder infection or a urinary tract infection.
“Sometimes I was in so much pain I couldn’t make it to my primary care, I would just be popping up at the doctor’s office and begging someone to help me,” Mitchell said.
A CT scan later found tumors in her liver, lungs, kidney, lymph nodes, stomach and chest, she said. It wasn’t until just a few weeks ago that doctors determined she had renal medullary carcinoma.
Dr. Emerson Lim, a medical oncologist at Corewell Health who focuses on bladder, prostate and kidney cancers, said it’s an “extraordinarily rare” condition. Doctors first named the disease back in 1995.
“I’ve been practicing for over 10 years now, and I’ve had maybe two or three patients have this type of cancer,” Lim said.
Of the 80,000 people who develop kidney cancer each year in the U.S., less than 1% of those patients have this disease.
Lim said renal medullary carcinoma primarily affects people with sickle cell disease or sickle trait. Just 1 in 20,000 people with those conditions can develop it.
If you have sickle cell disease or sickle trait and you notice blood in your urine, Lim recommends talking to your doctor about renal medullary carcinoma. But because it’s so rare, he said you shouldn’t assume you have it.
“If someone comes in with blood in the urine, you don’t think automatically renal medullary carcinoma because it’s so exceedingly rare,” he said.
Doctors say renal medullary carcinoma predominately affects young Black people.
“It does often arise in people who are younger,” Lim said. “It doesn’t necessarily just affect African American people, but people of African ancestry, Latino, Hispanic patients who have some African American ancestry are often at risk for this.”
There’s no good screening for it, Lim said. And because it’s so rare, he said there have been no clinical trials studying how to effectively treat it.
“Most people who have advanced renal medullary carcinoma will pass away from it,” Lim said.
Doctors usually rely on chemotherapy, and that’s what Mitchell gets every three weeks.
Mitchell said she’s currently living in a homeless shelter. She can’t work because of her condition. She said she went to the emergency room Sunday because fluid was building around her heart.
“I almost felt like I was having a heart attack,” she said. “I couldn’t breathe.”
While she’s unsure what her future holds, her priority is making sure her four young children always have a home.
“I’m definitely trying to work towards stability, especially because life is not promised for me,” Mitchell said. “I don’t want my kids to be homeless if anything happens to me.”
Mitchell said there’s one thing she wants everyone to know: If you feel something is wrong, listen to your body and don’t give up until you get answers.
“It’s something that’s crazy,” she said. “It’s so aggressive. It happens so quick. It’ll just change your life, so don’t ignore those signs. Don’t even risk it. Advocate for yourself.”
“My point in telling my story is to save someone else’s life,” she added.
Click here if you’d like to support Mitchell in her fight against cancer.