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 cell carcinoma. This is a cancer that has spread throughout the body and cannot be cured.

It took doctors almost a year of tests and procedures to determine Mitchell’s condition. This is often a challenge due to 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 comfortable caring for her four children, aged just 1, 2, 4 and 9. But she suddenly began to experience severe abdominal pain, which sent her back to the hospital frequently.

“Every time I came back, I was 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 I couldn’t even go to my primary care physician. I would just run into a doctor’s office and beg for someone to help me,” Mitchell said.

A subsequent CT scan showed tumors in her liver, lungs, kidneys, lymph nodes, stomach and chest, she said. Only a few weeks ago, doctors discovered that he had medullary renal cell carcinoma.

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

“I have been practicing for over 10 years and I have 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 U.S., 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. Only 1 in 20,000 people with these conditions may develop it.

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 presents with blood in the urine, medullary renal cell carcinoma is not immediately suspected because it is an extremely rare disease,” he said.

Doctors say medullary renal cancer mainly affects young black people.

“It often occurs in younger individuals,” Lim said. “It’s not necessarily just African-Americans, but people of African descent, Hispanic patients who have some African-American ancestry, are often affected.”

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 with advanced medullary renal cell carcinoma will die from it,” Lim said.

Doctors typically administer chemotherapy, and Mitchell receives it every three weeks.

Mitchell said she currently lives in a homeless shelter. Due to his condition he cannot work. 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 work on 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 something is wrong, listen to your body and don’t give up until you get answers.

“This is something crazy,” she said. “It’s so aggressive. It happens so fast. This will simply change your life, so don’t ignore these signs. Don’t even risk it. Defend 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.