Renal Medullary Carcinoma (RMC) is a rare and aggressive form of kidney cancer. It is most commonly associated with sickle cell trait and primarily affects adolescents and young adults.
RMC can be difficult to diagnose because it is rare and its symptoms can be similar to those of other conditions. Greater awareness and understanding of RMC are important in helping people recognise the condition and supporting continued research into its causes, diagnosis and treatment.
RMC is rare, but awareness matters.
Learn more about the condition, its connection with sickle cell trait, common symptoms and the importance of research.
1995
RMC was first described as a distinct cancer.
Young people
RMC commonly affects adolescents and young adults.
Strongly linked to sickle cell
Most reported cases are associated with sickle cell trait or another sickle cell haemoglobinopathy.
Renal Medullary Carcinoma can progress rapidly, and many reported cases are diagnosed after the cancer has already spread to other parts of the body. This makes raising awareness, recognising potential symptoms and supporting research particularly important.
The impact of late diagnosis can be devastating.
70.9% of reported cases were diagnosed at stage IV (when the cancer had spread to distant parts of the body)
9% three-year overall survival among reported stage IV cases
Greater awareness, earlier recognition and continued research are therefore essential to improving our understanding of RMC and the outcomes of those affected.
*Figures from a 2026 systematic review of published RMC cases. As RMC is extremely rare, available survival data are limited and estimates should be interpreted with caution.
A 2026 systematic review of published RMC cases found that 74% of patients whose ethnicity was reported were Black. Among patients whose sickle cell status was known, 88% had a sickle cell haemoglobinopathy, such as sickle cell trait or another sickle cell condition.
RMC predominantly affects adolescents and young adults, particularly those who carry sickle cell trait (HbAS). It has also been reported in people with other sickle haemoglobin conditions, although cases without an identified sickle cell haemoglobinopathy are exceptionally rare.
Sickle cell trait is more common among people with ancestry from regions where malaria has historically been prevalent, including parts of Africa, the Caribbean, the Mediterranean, the Middle East and South Asia. However, people of any ethnicity can carry sickle cell trait.
Importantly, most people with sickle cell trait will never develop RMC. The cancer remains exceptionally rare, even among those who carry the trait. Many people with sickle cell trait have no symptoms and may be unaware that they carry it.
The symptoms of Renal Medullary Carcinoma can be similar to those of more common kidney and urinary conditions, which can make the disease difficult to recognise.
Symptoms may include:
Blood in the urine (haematuria) ā urine may appear pink, red or brown, although blood is not always visible.
Pain in the side, back or abdomen ā particularly persistent pain around the kidney area.
Unexplained weight loss ā losing weight without intentionally changing your diet or activity levels.
Fatigue or weakness ā feeling unusually tired or lacking energy.
A lump or swelling in the abdomen ā although this is not present in every case.
Not everyone will experience the same symptoms, and some may develop gradually or be mistaken for other conditions.
These symptoms do not necessarily mean someone has RMC. Many have much more common causes. However, blood in the urine should always be checked by a healthcare professional, even if it happens only once.
Anyone experiencing persistent or unexplained symptoms should seek medical advice. People who know they carry sickle cell trait should also mention this to their healthcare professional when discussing relevant symptoms.
Sickle cell trait is an inherited genetic characteristic that occurs when a person carries one usual haemoglobin gene and one sickle haemoglobin gene.
Unlike sickle cell disease, people with sickle cell trait generally lead healthy lives without experiencing symptoms or complications. However, carrying the trait is strongly associated with RMC.
Someone can carry sickle cell trait without knowing it, particularly if they have never been tested or are unaware of their newborn screening results.
A blood test can identify whether someone carries sickle cell trait. If you are unsure of your sickle cell status, you can speak to your GP about testing.
Having sickle cell trait does not mean you will develop RMC. The condition is extremely rare, and research is continuing to improve our understanding of why it develops in a small number of people.
Early recognition matters
Recognising persistent or unexplained symptoms and seeking medical advice can help ensure timely investigation.
Rare kidney cancer
RMC is a rare form of kidney cancer.
Associated with sickle cell trait
RMC has a strong association with sickle cell trait.
Often affects young people
RMC predominantly affects adolescents and young adults.
Research is needed
There is still much to learn about RMC.
There are a number of organisations and resources providing information, research updates, clinical trial information and support relating to RMC, kidney cancer and sickle cell conditions. We have brought together some useful resources below.
RMC Alliance
Information about Renal Medullary Carcinoma, including symptoms, diagnosis, treatment, research and resources for patients and families.
NHS Blood Donation
Information about giving blood, donor eligibility and how your donation can help people with conditions such as sickle cell.Ā
Sickle Cell Society
Information, support and resources relating to sickle cell conditions and sickle cell trait.
Kidney Cancer UK
Information, support and resources for people affected by kidney cancer.
ClinicalTrials.gov
Search current and completed clinical trials and research studies relating to Renal Medullary Carcinoma.Ā
National Organization for Rare Disorders (NORD)
Information about Renal Medullary Carcinoma, including its characteristics, symptoms and association with sickle cell trait.
Recent RMC Research
A published systematic review examining Renal Medullary Carcinoma, including reported cases, clinical characteristics and survival outcomes.
Please note: Saraiās Light Foundation does not provide medical advice or diagnosis. For medical concerns, please speak to your GP, healthcare professional or appropriate specialist service.
Saraiās Light Foundation provides information and signposting for general awareness and educational purposes. The resources above are provided to help you find further information and support. They do not replace advice from a qualified healthcare professional.