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.
“…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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For some patients watching, one question might be, I have sickle cell trait. How can I minimize my risk of getting RMC?
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.
Dr. Tannir, are patients living with sickle cell disease likely to develop RMC?
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.