A 24-year-old Grand Rapids woman is battling “extremely rare” kidney cancer

GRAND RAPIDS, Mich. (WOOD) — A 24-year-old Grand Rapids woman says she is battling an extremely rare and aggressive form of cancer that only a few hundred people have diagnosed.

Aiyana Mitchell, a mother of four, has stage 4 medullary renal cancer, a cancer that has spread throughout the body and cannot be cured.

It took doctors nearly a year of testing and treatment to determine Mitchell’s condition, which is often a challenge because of the rare disease.

“It completely changes your life,” Mitchell told News 8 on Sunday. “They’re just trying to make me feel comfortable right now, it’s not something that can be reversed. It’s the worst news I’ve ever heard as a 24-year-old. My life has just begun.”

“You can lead a normal life and next year you will have stage four cancer,” she added. “It’s something that will happen at the snap of a finger.”

It all started in August last year. Mitchell says she felt great caring for her four children, who were just 1, 2, 4 and 9 years old. But suddenly she began to experience severe abdominal pain, which forced her to return to the hospital.

“Every time I came back, I was sicker and sicker,” she said. “I was weaker. I ate less. I slept less.”

She underwent several rounds of antibiotics, visits to the emergency room and her primary care physician. Doctors initially thought she had a bladder or urinary tract infection.

“Sometimes I was in so much pain that I couldn’t go to my GP. I would just run into the doctor’s office and beg someone for help,” Mitchell said.

A CT scan later showed tumors in her liver, lungs, kidneys, lymph nodes, stomach and chest, she said. It wasn’t until a few weeks ago that doctors diagnosed her with medullary renal cancer.

Dr. Emerson Lim, a medical oncologist at Corewell Health who specializes in bladder, prostate and kidney cancers, said it is an “extremely rare” condition. Doctors first gave the disease a name in 1995.

“I’ve been practicing for over 10 years and I’ve had maybe two or three patients with this type of cancer,” Lim said.

Of the 80,000 people who develop kidney cancer each year in the United States, the disease affects less than 1% of patients.

Lim said medullary renal cell carcinoma primarily affects people with sickle cell disease or sickle cell trait. It may develop in 1 in 20,000 people with such conditions.

If you have sickle cell disease or sickle cell trait and notice blood in your urine, Lim recommends talking to your doctor about MTC. But because it’s so rare, he said you shouldn’t assume you have it.

“If someone comes in with blood in their urine, you shouldn’t immediately think of medullary renal cell carcinoma because it’s extremely rare,” he said.

Doctors say medullary kidney cancer mainly affects young black people.

“It often appears in younger people,” Lim said. “It doesn’t necessarily only affect African Americans, but people of African descent, Latinos and Latinos who have some African American ancestry are often at risk.”

Lim said there is no good screening test for it. And because it’s so rare, he said there haven’t been any clinical trials examining how to treat it effectively.

“Most people who get advanced medullary renal cancer will die,” Lim said.

Doctors usually rely on chemotherapy, and Mitchell receives it every three weeks.

Mitchell said she is currently living in a homeless shelter. She is unable to work because of her condition. She said she went to the emergency room on Sunday because fluid was building up around her heart.

“I felt like I was having a heart attack,” she said. “I couldn’t breathe.”

Although she is unsure what the future holds, her priority is providing a home for her four young children.

“I’m definitely trying to strive for stability, especially since life isn’t promised to me,” Mitchell said. “I don’t want my kids to be homeless if something happens to me.”

Mitchell said she wants everyone to know: If you feel like something is wrong, listen to your body and don’t give up until you get answers.

“This is crazy,” she said. “It’s so aggressive. It’s happening so fast. It’s just going to change your life, so don’t ignore these signs. Don’t even risk it. Stand up for yourself.”

“By telling my story, I want to save someone’s life,” she added.

Click Here if you would like to support Mitchell in her fight against cancer.