Tag Archive for: sickle cell hemoglobinopathy

How Can Patients With Sickle Cell Trait Lessen RMC Risk?

How Can Patients With Sickle Cell Trait Lessen RMC Risk? from Patient Empowerment Network on Vimeo.

How can renal medullary carcinoma (RMC) risk be decreased by those with sickle cell trait? Expert Dr. Nizar Tannir explains the frequency of RMC in sickle cell trait patients and advice for patients to decrease their RMC risk.

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

“…seek information, seek facts, surround yourself with people, and get the information, get the knowledge. You can get it from several sources out there.”

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Intensive Exercise and Renal Medullary Carcinoma: Is There a Connection

Intensive Exercise and Renal Medullary Carcinoma: Is There a Connection

Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients

Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients

Should Families of Renal Medullary Carcinoma Patients Undergo Genetic Testing?

Should Families of Renal Medullary Carcinoma Patients Undergo Genetic Testing?


Transcript:

Cora:

For some patients watching, one question might be, I have sickle cell trait. How can I minimize my risk of getting RMC?

Dr. Tannir:

RMC is a rare disease, it’s a rare cancer, I do not want individuals, subjects who have sickle cell trait to panic that they are doomed, they’re going to have RMC. The vast, vast, vast majority of individuals, of citizen subjects who have sickle cell trait will not develop RMC. So I don’t want to equate the two. I do not want to equate having sickle cell trait with RMC and scare everyone. The millions of our citizens in this country and the millions of citizens in Sub-Saharan Africa, in Greece, in Brazil, everywhere in, there are people with sickle cell trait to scare them that they are destined to have RMC.

But it is important to be aware of the link and to be vigilant and to be diligent and to seek information. And I think having educational programs and by what you do also yourself, or what you’ve done, through your RMC Inc. Support Group, that information is incredible, is valuable. And I think my activation tip for individuals is seek information, seek facts, surround yourself with people, and get the information, get the knowledge. You can get it from several sources out there.

Obviously, you [Patient Empowerment Network] have been a beacon of hope, Cora, for so many, who came to you, asking you for information, for guidance, and I hope you continue to do that, which you made it your mission after Herman, hopefully now is cured, from RMC this month April is a month that in 2012, I had an email from Herman, April 12th, 2012 I remember in April, 2012 and here we are 11 years later. That’s the hope that patients with RMC and their caregivers should have, should know about that there is hope. And Herman who had stage IV RMC is alive 11 years later, there is hope, and it’s cured.

Cora:

Dr. Tannir, are patients living with sickle cell disease likely to develop RMC?

Dr. Tannir:  

To be honest with you, in 22 years at MD Anderson, I have not seen a patient with sickle cell disease who came to me, had RMC. It could happen, theoretically it could happen, but sickle cell disease is so rare compared to sickle cell trait is much, much less common. But I have not seen it. I have seen one or two patients who had RMC and had other sickle cell hemoglobinopathy, but not sickle cell disease. I think again, the vast, vast majority of patients have sickle cell trait and not sickle cell disease, it’s just a matter of numbers. 


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What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

What Are the Challenges of Diagnosing Renal Medullary Carcinoma? from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) diagnosis may sometimes run into changes, but what are they? Expert Dr. Nizar Tannir explains what healthcare providers examine in RMC diagnosis, diagnosis challenges that can arise, and advice to patients to ensure they receive standard testing.

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

“…make sure that they…with that suspicion of having a mass in the kidney, blood in the urine symptoms, et cetera, to if they have not already known about their sickle cell trait status, to really have the test, which we call hemoglobin electrophoresis.”

Download Guide  |  Descargar Guía

See More from [ACT]IVATED RMC

Related Resources:

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

Transcript:

Cora:

What are the challenges with diagnosing RMC?

Dr. Tannir:  

RMC is a rare tumor and it requires a special stain as well as the knowledge the clinical knowledge that comes with it. So to make the diagnosis of RMC, we typically get a biopsy of the mass in the kidney and/or a metastatic site, a site that the cancer has spread to, let’s say the lymph node. And then the pathologist examines this material, the specimen under the microscope, and the diagnosis is confirmed when the pathologist reads that the tumor is poorly differentiated, because that’s what RMC looks like under the microscope and is described by the pathologist as poorly differentiated adenocarcinoma. But the specific strain that clenches the diagnosis is called I-N-I 1.

INI1 and that is negative or worse. So when we see poorly differentiated carcinoma from a lymph node or a biopsy of a kidney mass, and then we have to link it with the history. And it’s important to ask then the subject, the patient, if they have sickle cell trait or if they’re aware that they have some sickle cell hemoglobinopathy. And if they do have sickle cell trait or another sickle cell hemoglobinopathy with that finding and the biopsy of poorly differentiated carcinoma, INI1-negative, that’s then it confirms the diagnosis of RMC. My activation tip is for the subject to make sure that they…with that suspicion of having a mass in the kidney, blood in the urine symptoms, et cetera, to if they have not already known about their sickle cell trait status, to really have the test, which we call hemoglobin electrophoresis. So that’s actually an activation tip for the provider when they face a patient with suspected diagnosis of RMC. If that information is not already known is to order the hemoglobin electrophoresis, which will then tell them that the patient, the individual has sickle cell trait or not. So, I think it requires awareness by both the individual, the subject as well as the healthcare provider.


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What Is Renal Medullary Carcinoma?

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. 


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