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Interviewer:
Dr. Msaouel, what steps can be taken for earlier detection of renal medullary carcinoma?
Dr. Pavlos Msaouel:
So, the question of earlier detection is a difficult question of course because we are still gathering data. It is not an easy thing to detect this cancer early, and it always comes with pros and cons when you are trying to do more screening for things. Because the problem is that sometimes being too scared about something that may happen to you may end up causing more problems than good -- more harm than good. So, we have to be careful with what recommendations we give. I would say though that -- at the very least -- that it's important to know whether you carry the sickle cell trait or not.
If you have the sickle cell disease, you will know it, but if you have the trait very often you may not know this so, that's number one -- knowing whether you have the trait or not id important, and many people who have the trait live very normal lives with no issues. However, at the same time it is important to highlight that the sickle cell trait is not completely benign, it is associated with certain risks -- RMC is one of them. So, knowing about that is important and if you know that you carry the trait and you are starting to have blood in your urine then taking that seriously can help diagnose this earlier, diagnose RMC earlier.
Sometimes this blood or this odd color in the urine may not be blood actually, but taking it seriously and going to a doctor is going to be important and at the same time once you are diagnosed it is important to try and get in touch with people in the community, physicians who are dedicated to treating this cancer --- and so, we have a network of clinicians, physicians overall, researchers and other people who are very passionate about helping individuals with RMC. So, doing that early and getting in touch with them will be very helpful. At the same time it will also be helpful if you get in touch with a patient community so if you do have RMC, you are not alone.
There are other people, both them and their families that have been afflicted by this disease and what I have seen happen is that when people who are diagnosed with this disease -- wherever they are in the world -- get in touch with these patient advocates and patient communities that helps them. Because they know how to get them in touch with people like us, they know how to guide them from a different level -- you know how it is, challenging from a psychological and psychosocial perspective, guide them through this very tough and challenging point in their lives. And I did mention -- and it is true -- that the vast majority of patients will unfortunately present with stage 4 disease that has spread, but there is always hope. So, it is a challenging cancer. I am not sugarcoating it at all, but at the same time there is hope. We have had patients that were afflicted by this disease and are now alive for 6 or 7 or more years, cancer free. So, we have been able to achieve that for some patients and our goal -- and that's what we're working towards and that's what we're doing research for is to one day be able to achieve that for everybody.
important to know whether you carry the sickle cell trait or not.
If you have the sickle cell disease, you will know it, but if you have the trait very often you may not know this so, that's number one -- knowing whether you have the trait or not id important, and many people who have the trait live very normal lives with no issues. However, at the same time it is important to highlight that the sickle cell trait is not completely benign, it is associated with certain risks -- RMC is one of them. So, knowing about that is important and if you know that you carry the trait and you are starting to have blood in your urine then taking that seriously can help diagnose this earlier, diagnose RMC earlier.
Sometimes this blood or this odd color in the urine may not be blood actually, but taking it seriously and going to a doctor is going to be important and at the same time once you are diagnosed it is important to try and get in touch with people in the community, physicians who are dedicated to treating this cancer --- and so, we have a network of clinicians, physicians overall, researchers and other people who are very passionate about helping individuals with RMC. So, doing that early and getting in touch with them will be very helpful. At the same time it will also be helpful if you get in touch with a patient community so if you do have RMC, you are not alone.
There are other people, both them and their families that have been afflicted by this disease and what I have seen happen is that when people who are diagnosed with this disease -- wherever they are in the world -- get in touch with these patient advocates and patient communities that helps them. Because they know how to get them in touch with people like us, they know how to guide them from a different level -- you know how it is, challenging from a psychological and psychosocial perspective, guide them through this very tough and challenging point in their lives. And I did mention -- and it is true -- that the vast majority of patients will unfortunately present with stage 4 disease that has spread, but there is always hope. So, it is a challenging cancer. I am not sugarcoating it at all, but at the same time there is hope. We have had patients that were afflicted by this disease and are now alive for 6 or 7 or more years, cancer free. So, we have been able to achieve that for some patients and our goal -- and that's what we're working towards and that's what we're doing research for is to one day be able to achieve that for everybody.
