What Is Renal Medullary Carcinoma?

/in , , , , , , /by

What Is Renal Medullary Carcinoma? from Patient Empowerment Network on Vimeo.

How is renal medullary carcinoma (RMC) defined? Expert Dr. Nizar Tannir explains RMC, who is most often impacted, and the risk factors for developing RMC.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“for individuals who have sickle cell trait, first is to not panic, please. Sickle cell trait is very common as we know, at least 3 million in the United States have that. Vast majority of patients will not develop RMC. So people with sickle cell trait should not panic that they will…they are destined to develop RMC, because only very, very few will develop it.”

Download Guide  |  Descargar Guía

See More from [ACT]IVATED RMC

Related Resources:

What Are the Symptoms of Renal Medullary Carcinoma?
How Is Renal Medullary Carcinoma Diagnosed
 What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

Transcript:

Cora:

What exactly is renal medullary carcinoma? And is this disease exclusive to those with sickle cell trait?

Dr. Tannir:

Renal medullary carcinoma is the most aggressive type of kidney cancer and it afflicts young people who are African American in the United States, and the vast majority of these patients or these individuals, have sickle cell trait. But the reason the vast, and I would say 95 percent of subjects or patients who have RMC have sickle cell trait, is because sickle cell trait is much, much more common than sickle cell disease. And so statistically-speaking, sickle cell trait is much more common than we see, the vast majority of patients with RMC have sickle cell trait. So sickle cell trait…but in general, a broader sickle cell hemoglobinopathy is the most important risk factor for developing RMC. That’s the link, the most important link between the renal medullary carcinoma. That most aggressive kidney cancer type and sickle cell hemoglobinopathy.

There is a close type of kidney cancer where individuals will have similar tumor type. Aggressive, but they don’t have the sickle cell trait or other sickle cell hemoglobinopathies and that entity is called renal cell carcinoma, unclassified with medullary phenotype. Medullary phenotype is the resemblance with the RMC. My activation tip for individuals who have sickle cell trait, first is to not panic, please. Sickle cell trait is very common as we know, at least 3 million in the United States have that. Vast majority of patients will not develop RMC. So people with sickle cell trait should not panic that they will…they are destined to develop RMC, because only very, very few will develop it. So, I think it’s important to be aware of that link of RMC and sickle cell trait but not to really make it, and worry every day that this is…that they’re doomed.

I want people to really not panic and understand the link and have the awareness, and if they haven’t been tested for sickle cell trait, they should be tested. And I think nowadays all hospitals test the newborns for sickle cell trait, but it should not be a scare for people who have it already. 

Share Your Feedback

Create your own user feedback survey

What You Need to Know Before Choosing a Cancer Treatment

/in , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , /by

What You Need to Know Before Choosing a Cancer Treatment from Patient Empowerment Network on Vimeo.

Download Guide

Haga clic aquí para ver en español

What steps could help you and your doctor decide on the best treatment path for your specific cancer? This animated video explains how identification of unique features of a specific cancer through biomarker testing could impact prognosis, treatment decisions and enable patients to get the best, most personalized cancer care.

If you are viewing this from outside of the US, please be aware that availability of personalized care and therapy may differ in each country. Please consult with your local healthcare provider for more information.

Related Programs:

 

PEN-Powered Activity Guides

Digitally Empowered™

TRANSCRIPT:

Dr. Jones:

Hi! I’m Dr. Jones and I’m an oncologist and researcher. I specialize in the care and treatment of patients with cancer. 

Today we’re going to talk about the steps to accessing personalized care and the best therapy for YOUR specific cancer. And that begins with something called biomarker testing.

Before we start, I want to remind you that this video is intended to help educate cancer patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

Let’s start with the basics–just like no two fingerprints are exactly alike, no two patients’ cancers are exactly the same. For instance, let’s meet Louis and another patient of mine, Ben. They both have the same type of cancer and were diagnosed around the same time–but when looked at up close, their cancers look very different.  And, therefore, should be treated differently.

We can look more closely at the cancer type using biomarker testing, which checks for specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to an individual’s disease.

Sometimes called molecular testing or genomic testing, biomarker testing can be administered in a number of ways, such as via a blood test or biopsy. The way testing is administered will depend on YOUR specific situation.

The results could help your healthcare team understand how your cancer may behave and to help plan treatment. And, it may indicate whether targeted therapy might be right for you. When deciding whether biomarker testing is necessary, your doctor will also take into consideration the stage of your cancer at diagnosis.

Louis:

Right! My biomarker testing results showed that I had a specific gene mutation and that my cancer may respond well to targeted therapy.

Dr. Jones, Can you explain how targeted therapy is different than chemo?

Dr. Jones:

Great question! Over the past several years, research has advanced quickly in developing targeted therapies, which has led to more effective options and better outcomes for patients.

Chemotherapy is still an important tool for cancer treatment, and it works by affecting a cancer cell’s ability to divide and grow. And, since cancer cells typically grow faster than normal cells, chemotherapy is more likely to kill cancer cells.

Targeted therapy, on the other hand, works by blocking specific mutations and preventing cancer cells from growing and dividing.

These newer therapies are currently being used to treat many blood cancers as well as solid tumor cancers.  As you consider treatments, it’s important to have all of the information about your diagnosis, including biomarker testing results, so that you can discuss your treatment options and goals WITH your healthcare team.

Louis:

Exactly–Dr. Jones made me feel that I had a voice in my treatment decision. We discussed things like potential side effects, what the course of treatment looks like and how it may affect my lifestyle.

When meeting with your healthcare team, insist that all of your questions are answered. Remember, this is YOUR life and it’s important that you feel comfortable and included when making care decisions. 

Dr. Jones:

And, if you don’t feel your voice is being heard, it may be time to consider a second—or third—opinion from a doctor who specializes in the type of cancer you have. 

So how can you use this information to access personalized treatment?

First, remember, no two cancers are the same. What might be right for someone else’s cancer may not work for you.

Next! Be sure to ask if biomarker testing is appropriate for your diagnosis. Then, discuss all test results with your provider before making a treatment decision. And ask whether testing will need to be repeated over time to identify additional biomarkers.

Your treatment choice should be a shared decision with your healthcare team. Discuss what your options and treatment goals are with your doctor.

And, last, but not least, it’s important to inquire about whether a targeted therapy, or a clinical trial, might be appropriate for you. Clinical trials may provide access to promising new treatments.

Louis:

All great points, Dr. Jones! We hope you can put this information to work for you. Visit powerfulpatients.org to learn more tips for advocating for yourself.

Dr. Jones:

Thanks for joining us today. 

This program is supported by Blueprint Medicines, and through generous donations from people like you.

What Health Disparities Exist for Patients with Renal Medullary Carcinoma?

/in , , , , , , , , /by

This video was originally published by Diverse Health Hub here.

What Health Disparities Exist for Patients with Renal Medullary Carcinoma? from Diverse Health Hub on Vimeo.

Dr. Pavlos Msaouel broaches the disparities that exist for patients with Renal Medullary Carcinoma (RMC). He contends that RMC afflicts a very vulnerable population, that is young African Americans. The disparity exists due to the young age of these patients who aren’t part of a work force with health insurance. Secondarily, this has caused RMC to be underdiagnosed, preventing optimal treatment for patients.

On a global scale, Nigerians face the same disparity, as traits of RMC affect a large number of the population. There are virtually zero reports of its existence and patients again are underdiagnosed. Dr. Msaouel argues we need to research questions that answer where and how RMC affects particular populations in order to equalize the disparity of underdiagnosed patients. Currently the US is gathering data and creating RMC patient communities and advocates. Dr. Msaouel stresses this research is needed on a global scale as well.

Transcript:

Rebecca Law:

Dr. Msaouel, what disparities exist for patients with Renal Medullary Carcinoma?

Dr. Pavlos Msaouel:

Now that is a wonderful and very important question because there are certainly disparities in caring for individuals with RMC (Renal Medullary Carcinoma). Think about it these are people who are young and young people in general — you know they do not have necessarily for example, in the U.S. that kind of insurance when they’re in their twenties or teenagers that they will have later in life or even you know are not part of the work force in that sense. But it’s even more challenging if you think that the vast majority of individuals with RMC are young African Americans. So, this is a disease that particularly afflicts a very vulnerable population, so there is no doubt that health disparities afflict individuals with RMC and this may be part of the reason why for many years this was an underdiagnosed disease.

Dr. Pavlos Msaouel:

We are finding out now that this cancer is more common than we originally thought. It’s still a rare cancer, there is no doubt about that, but it is more common than we originally thought to the point that nowadays in our clinics we see about 1 new case, 1 new patient with RMC per month. So that’s certainly more common than the about 100 cases that have been published thus far in the literature—there are many more that we do not know of. And think about it also in a different way, from a more global perspective. So, there is about let’s say 3 million individuals in the U.S. who carry the sickle cell trait. Most would be African Americans, other ones will be Caucasians so there are many different people who can have the sickle cell trait, but it’s mainly African Americans, but there are 300 million people in the world that carry the sickle cell trait — mainly in Africa.

Dr. Pavlos Msaouel: 

So, let’s take for example, Nigeria – there are many people in Nigeria who have the sickle cell trait yet how may reports are there about the existence of this cancer in these countries, essentially almost 0 and so that is a disparity in itself. This is a cancer that can be difficult to diagnose especially if you do not know about it, if you’ve never heard of it, but even if you do – even if a physician or healthcare personnel knows about this cancer it still needs specific tests to be done and many of them cannot be done in most countries so that’s also a disparity.

Dr. Pavlos Msaouel:

So the mere fact that this cancer cannot be diagnosed in many countries in the world is a disparity in itself, so if we were able to correct this and understand more about where it happens and how often it happens we know much more nowadays thankfully through the work of many people in the U.S. now that are becoming passionate about helping individuals with RMC (Renal Medullary Carcinoma) so we are gathering a lot of data, a lot of information, we have patient communities in the U.S., we have patient advocates that help immensely in the U.S, but this is very likely a global phenomenon, so that’s a disparity that will need to be addressed.

How Can Providers Combat Inequities in the Care of Renal Medullary Carcinoma Patients?

/in , , , , , , , /by

This video was originally published by Diverse Health Hub here.

How Can Providers Combat Inequities in the Care of Renal Medullary Carcinoma Patients? from Diverse Health Hub on Vimeo.

Dr. Msaouel tackles the question of how providers can combat inequities in the care of Renal Medullary Carcinoma (RMC) patients. He states that patients go undiagnosed because providers don’t know about the disease. Dr. Msaouel urges that healthcare providers raise awareness about RMC and in doing so be diligent about screening patients with particular symptoms.

According to Dr. Msaouel, young African Americans possessing sickle cell traits and blood in the urine must be taken seriously and screened with ultrasound to check for suspicious kidney masses. They must be thoroughly checked with proper diagnosis. Dr. Msaouel says providers in the US know more about RMC but efforts must be increased to raise optimal awareness not only here in the states but around the world.

Transcript:

Rebecca Law: Dr. Msaouel, what can providers do to combat inequities in the care of Renal Medullary Carcinoma patients?

Dr. Pavlos Msaouel: So that’s a wonderful question. One way to be able to address this is to help as a provider raise awareness. So, one of the things that is happening is that very often in these cases, patients with RMC are undiagnosed because people don’t know about it. So, if healthcare providers know about this then they can think about it, and then they can start having it in mind. And so, if a young individual — especially if it’s a young African American who has the sickle cell trait — comes with blood in the urine in the ER you have to take it seriously.

Dr. Pavlos Msaouel: You have to do potentially an ultrasound of the kidney and if you do an ultrasound of the kidneys and you find something that’s suspicious like a mass, you have to take that very seriously. This is thankfully happening more and more often in the United States, but not necessarily always and it needs to happen more often around the world as well. So, that’s a simple step that we can do to address the inequity for this cancer.

Are Sickle Cell Disease Patients More Susceptible to Renal Medullary Carcinoma?

/in , , , , , /by

This video was originally published by Diverse Health Hub here.

Are Sickle Cell Disease Patients More Susceptible to Renal Medullary Carcinoma? from Diverse Health Hub on Vimeo.

Are sickle cell disease patients more at risk for developing renal medullary carcinoma? In this highly informative interview, Dr. Pavlos Msaouel, a respected clinician at The University of MD Anderson Cancer Center specializing in treating RMC, shares why sickle cell disease patients and those with sickle cell trait may be more at risk for developing RMC.

Transcript:

Rebecca Law: 

Dr. Msaouel, are sickle cell disease patients more susceptible to renal medullary carcinoma?

Dr. Pavlos Msaouel:

So that is a wonderful question. So, it is not just individuals with sickle cell disease that are more susceptible to developing RMC, it also individuals with sickle cell trait. And there are many more individuals who have the sickle cell trait than those with disease.

Dr. Pavlos Msaouel:
About for every one individual with sickle cell disease there will be about 40 — that’s 4-0 — individuals with sickle cell trait. And many of them that carry the sickle cell trait will not know that they carry the sickle cell trait. So having either sickle cell disease or sickle cell trait increases substantially the risk for developing RMC. And why does that happen? It happens because when you carry either the sickle cell trait or sickle cell disease, your red blood cells — these are the cells in the blood that carry oxygen — normally, they will have this round shape, but if you have the sickle cell disease that shape is changed, it’s like a sickle, it changed to the form of a sickle.

Dr. Pavlos Msaouel:
If you have the sickle cell disease that will happen everywhere in your body. If you have the sickle cell trait, then your red blood cells will look normal in most areas of your body. However, there is one area in the kidney called the medulla of the kidney where the cells will look sickles whether you have sickle cell trait or sickle cell disease. And to our understanding, having these cells that look like sickles in the medulla damages the medulla in a way that increases the risk for developing this cancer. So RMC stands for renal medullary carcinoma and the medullary part in the middle of the name means that it comes from the medulla.

What is Renal Medullary Carcinoma?

/in , , , , , /by

This video was originally published by Diverse Health Hub here.

What is Renal Medullary Carcinoma? from Diverse Health Hub on Vimeo.

What is renal medullary carcinoma (RMC)? Dr. Pavlos Msaouel, a medical oncologist treating rare forms of renal cell and urothelial carcinomas, gives an overview of RMC, a rare, deadly type of kidney cancer predominantly afflicting young adults of African decent with sickle cell disease. Dr. Msaouel shares what symptoms have often led to diagnosis and points out that 75% of all RMC cases originate in the right kidney.

Transcript:

Rebecca Law:

Dr. Msaouel, what is renal medullary carcinoma and how is it diagnosed?

Pavlos Msaouel, MD, PhD:
RMC is the acronym for a kidney cancer named Renal Medullary Carcinoma. Renal Medullary Carcinoma or RMC is one of the deadliest kidney cancers, and it predominantly afflicts young people mainly of African descent that carry the sickle cell trait or sickle cell disease.

Pavlos Msaouel, MD, PhD:
It is often diagnosed after patients start developing symptoms, and those symptoms can be blood in the urine — the medical term is hematuria — or they may have pain in their flanks on their side where the kidneys would be, on the right side or on the left side.

Pavlos Msaouel, MD, PhD:
Interestingly RMC mainly happens on the right kidney, so about 75% of all RMC cases will happen in the right kidney. And unfortunately, in the vast majority of cases when it does present, it will be what we call stage 4 — meaning metastatic — meaning it will have spread to other organs.