Mission Objective 03 · Raise Awareness
RMC moves too quickly for silence
Families, young people, coaches, pediatricians, and communities deserve to know that a rare and devastating kidney cancer can hide inside someone who appears strong, athletic, and healthy.
Renal medullary carcinoma
Rare, aggressive, and often diagnosed after it has spread
Renal medullary carcinoma (RMC) is one of the rarest and most aggressive kidney cancers in medicine. Only a few hundred cases have been described in medical literature. It often advances silently and rapidly; by diagnosis, metastatic disease may already be present in places that ordinary imaging has not yet detected.
RMC predominantly affects Black patients, but it is not exclusive to any race. What connects nearly all known cases is sickle cell trait or sickle cell disease. The burden falls especially hard on young Black men and boys—often people who look athletic, active, and exceptionally healthy.
That was Jelani. Our family had no warning that the sickle cell trait he carried was associated with a cancer that could take his life at only 15.
Young
The average age at diagnosis is approximately 28, and patients with sickle cell trait or disease are often diagnosed younger.
Fast
RMC can metastasize early, sometimes before spread is visible on the scans families are initially able to obtain.
Overlooked
Flank pain or blood in the urine can be dismissed in someone who otherwise looks healthy and strong.
The cruelest part
It can hide behind health
The year before his diagnosis, Jelani became a two-sport athlete in basketball and track. He was active and appeared to be the picture of good health. Research led by Dr. Pavlos Msaouel’s team at MD Anderson has explored how intense physical activity may worsen the low-oxygen conditions inside the kidneys of people with sickle cell trait—suggesting a possible modifiable risk factor that families deserve to understand.
The very activity adults encourage in children—sports, conditioning, pushing harder to become healthier—may present an unknown danger for a small population. JWSH wants young people to enjoy active lives while knowing their trait status, understanding potential warning signs, and seeking prompt medical attention when something is wrong.
Learn from the RMC team at MD AndersonTime matters
Detection and access must improve
Because RMC spreads so aggressively, scheduling advanced imaging can consume time patients and families do not have. PET scans may identify disease that is difficult to detect with other equipment, yet they can be harder to schedule and harder to secure through insurance approval.
Families need clinicians who will listen, appropriate scans without avoidable delays, and research into earlier detection—including the possibility that future blood-based tests or biomarkers could reveal disease before it becomes widely visible.
Research is moving forward. Dedicated teams have investigated the molecular mechanisms connecting sickle cell hemoglobinopathies to RMC, the potential biomarker CA-125, and treatments that target RMC’s particular biology. For a cancer diagnosed in fewer than 100 people worldwide in many years, every study and every patient connection matters.
What families should know
Healthy and athletic does not mean “not at risk.”
Know trait status
Every young person who carries sickle cell trait deserves to know it and understand that it can have health implications beyond reproduction.
Recognize warning signs
Blood in the urine and unexplained flank, abdominal, or back pain—especially with sickle cell trait—should never be casually dismissed.
Ask questions early
Parents, coaches, and pediatricians should take persistent symptoms seriously and ask whether specialist evaluation or advanced imaging is appropriate.
Why this education cannot wait
We share Jelani’s story so the next family recognizes the warning signs sooner
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