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Education & awareness

RMC Educational Toolkit

Explore our resources about sickle cell trait and RMC. Expand each topic to read more.

Know the connection

What is RMC?

Renal medullary carcinoma (RMC) is a very rare and aggressive cancer that starts in the inner part of a kidney. Aggressive means it can grow and spread quickly. RMC is seen most often in teens and young adults. RMC is strongly linked to sickle cell trait, but having the trait does not mean a person will develop this cancer.

01 / UNDERSTAND

How are sickle cell trait and RMC connected?

Sickle cell trait is an inherited blood condition. RMC is a very rare and aggressive kidney cancer. They are different conditions, but people with sickle cell trait have a higher risk of RMC. RMC is still extremely rare, and most people with the trait will never develop it. If you do not know your trait status, ask a healthcare provider about hemoglobin electrophoresis, a blood test that checks which types of hemoglobin you have.

02 / RECOGNIZE

What are possible signs of RMC?

Blood in the urine is the most common sign of RMC. Other possible signs include a lump in the abdomen, fever or night sweats, pain near a kidney or in the side or back, fatigue, and unexplained weight loss. These symptoms can have many causes, but they should be checked.

03 / ACT

What should I do if I notice these signs?

Contact a healthcare provider promptly, especially if you see blood in your urine, even once. Tell them if you have sickle cell trait or do not know your status. Ask what evaluation is appropriate for you.

This information is for education and does not replace medical care. Sources: National Cancer Institute’s RMC guide ↗ and CDC sickle cell trait guide ↗, and MD Anderson’s explanation of the connection ↗.

Sickle cell trait & RMC

Explore the educational toolkit.

Sickle cell trait and renal medullary carcinoma (RMC) are different conditions. Sickle cell trait means a person inherited one usual hemoglobin gene and one sickle hemoglobin gene. RMC is a very rare and aggressive kidney cancer. Most reported RMC cases involve sickle cell trait, but RMC can also occur in people with sickle cell disease. Having either condition does not mean someone will develop RMC.

Campaign and research visuals are illustrations, not photographs of 4Troy events or medical staff.

Understanding sickle cell trait and diseaseTrait and disease are different. Most people with trait are healthy and may not know they carry it.

Sickle cell trait means inheriting one usual hemoglobin gene (A) and one sickle hemoglobin gene (S). Sickle cell disease involves two genes that make abnormal hemoglobin, such as HbSS or HbSC, and can cause serious health problems.

To learn your status, ask a healthcare professional about hemoglobin electrophoresis, a blood test that identifies hemoglobin types. You can also ask whether your newborn screening result is available.

What is RMC, and how are they connected?RMC starts in the kidney’s inner region. It is reported most often in young people with sickle cell trait, but disease can also be associated with it.

RMC is a rare, aggressive cancer of the kidney’s inner region, called the medulla. Most reported cases involve sickle cell trait (HbAS). It can also occur with sickle cell disease, including HbSS and HbSC. Most people with these conditions will never develop RMC.

The medulla has low oxygen and other conditions that can make red blood cells sickle. Researchers are studying whether repeated tissue injury there contributes to RMC and changes involving a gene called SMARCB1 and its INI1 protein. This is a developing explanation, not a proven sequence for every patient.

  • RMC is seen most often in teens and young adults. In the United States, it is diagnosed more often in young Black people because sickle hemoglobin conditions are more common in this population. People of any background can be affected.
  • Men are diagnosed more often than women, and the right kidney is affected more often than the left. MD Anderson explains these patterns ↗

Knowing your trait status matters, but having sickle cell trait does not mean you need routine RMC screening. Discuss your own questions and symptoms with a healthcare professional.

Athletes, sickle cell trait, and RMCPeople with sickle cell trait can participate in sports. Researchers are studying whether repeated, very intense exertion may contribute to RMC risk, but exercise has not been proven to cause RMC in any one person. Athletes should know their trait status, train with appropriate precautions, and have blood in the urine checked promptly.

Why this matters to 4Troy

Troy Anthony Haynes Jr. was an athlete and received care at MD Anderson Cancer Center. His treatment team included Dr. Pavlos Msaouel, an RMC physician-scientist who designed Troy’s clinical trial. We share this information to honor Troy and help athletes, families, coaches, and healthcare professionals recognize concerns early. It does not suggest that sports caused Troy’s cancer.

What researchers are studying

The inner kidney naturally has low oxygen and other conditions that can encourage red blood cells to sickle in someone with sickle cell trait. Very intense exertion and dehydration may add stress. Researchers are studying whether repeated injury there contributes to RMC and changes involving SMARCB1/INI1. This is a developing explanation, not a proven sequence for every case.

A carefully scoped observation: MD Anderson reports that about 60%–70% of the young Black men with sickle cell trait who developed RMC described in its explanation also had a history of high-intensity exercise. That figure is not a percentage of all people with RMC. It does not prove that exercise caused anyone’s cancer or establish an individual athlete’s risk. Dr. Msaouel and colleagues have studied the possible association in patients and experimental models.

Signs athletes should not dismiss

  • Visible blood in the urine, even after a workout, needs prompt medical evaluation.
  • Persistent side or back pain near the kidney should be discussed with a healthcare professional.
  • If unusual fatigue, weakness, cramping, or breathing difficulty occurs during activity, stop and seek appropriate help. These symptoms have many possible causes.

Do not assume blood in the urine is “just training” or diagnose RMC yourself. A clinician can investigate the cause.

Training with sickle cell trait

Having sickle cell trait does not mean an athlete must stop playing sports. To reduce exercise-related illness:

  • Build conditioning gradually and set a manageable pace.
  • Stay hydrated and allow rest and recovery breaks.
  • Do not push through concerning symptoms; get help promptly for cramping, unusual weakness, or breathing difficulty.

These precautions are for exercise-related illness. They have not been proven to prevent RMC. In the United States, RMC is seen more often in young Black people in part because sickle hemoglobin conditions are more common in that population; people of other backgrounds can also be affected.

Sources: MD Anderson and Dr. Pavlos Msaouel on RMC and exercise ↗ · Published RMC and exercise research ↗ · CDC guidance for athletes with sickle cell trait ↗

This information is for education, not a diagnosis or a personal training or treatment plan.

Know the warning signsBlood in the urine is the most common reported sign of RMC. Other symptoms also deserve medical attention.
  • Blood in the urine: It may look pink, red, brown, or tea-colored.
  • Pain: An ache or sharp pain in the side or back near a kidney.
  • Other signs: An abdominal lump, fever or night sweats, fatigue, or unexplained weight loss.

When cancer has spread: Symptoms depend on where it has spread and can include a persistent cough, chest pain, or bone pain. These symptoms do not automatically mean RMC.

Blood in the urine or side pain can also have other causes, including infection or kidney stones. Seek prompt medical evaluation, especially for visible blood in the urine, rather than trying to diagnose the cause yourself.

How doctors investigate possible RMCDoctors use symptoms, imaging, and tissue testing together. No single blood test or image confirms RMC.
  • History and tests: The team reviews symptoms and sickle cell status. Blood and urine tests help assess health and kidney function. Hemoglobin electrophoresis or another suitable hemoglobin test can clarify trait or disease status.
  • Imaging: Ultrasound may be used; CT or MRI can help locate a mass and look for possible spread. The exact tests and order depend on the person.
  • Biopsy: A small tissue sample is examined by a pathologist, ideally one experienced with RMC.
  • INI1/SMARCB1: Loss of the INI1 protein is an important clue. It does not prove RMC by itself because other cancers may also lack INI1; additional review and tests may be needed.
Treatment, advocacy, and next stepsRMC can progress quickly. An experienced RMC team should guide diagnosis and treatment decisions.

RMC is often advanced when found. Treatments used for more common kidney cancers may not work well for it. For most patients, an RMC-experienced team begins with chemotherapy and considers surgery later when appropriate. The plan depends on the person and the extent of the cancer.

Questions to ask the care team:

  • Could this be RMC?
  • Has my sickle cell status been confirmed?
  • Can an RMC-experienced team review the imaging and biopsy?

This toolkit is for education. It is not a diagnosis or a personal treatment plan.

Learn more from the National Cancer Institute’s RMC guide, CDC sickle cell trait information, and MD Anderson’s RMC information.