What Questions Should You Ask About Renal Medullary Carcinoma?
Renal medullary carcinoma may not be on the radar of all primary care providers. Watch as expert Dr. Kimryn Rathmell provides advice on questions those with sickle cell trait can ask their doctors.
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In this program:
Renal medullary carcinoma may not be on the radar of all primary care providers. Watch as expert Dr. Kimryn Rathmell from Vanderbilt University Medical Center provides advice on questions those with sickle cell trait can ask their doctors – and a resource for locating RMC specialists.
Transcript
Dr. Kimryn Rathmell:
So I think they should mostly ask their doctor, “What should I be thinking about, because I carry a sickle cell trait,” so that their doctor can answer that fairly broadly. Most primary care doctors probably won't really know about renal medullary carcinoma, so they would be educating their doctor and saying, “You know, there's this rare tumor, do I need to be worried?” Their doctor will likely say, “You don't really need to be worried because it is so rare.” But once they've helped educate that doctor, if they ever were to come back and say, “Hey, I have a little bit of blood in my urine.” It's those little things that can make a doctor be like, “Wait a minute, I need to be thinking about something different here.” Being a doctor is hard, and there are a lot of various inputs that you have to work with, particularly with someone who's 20 years old, and I think it's behooves patients to know their risk and to be able to ask additional questions of their doctors. I think if someone is diagnosed, so at that point they would land with an oncologist, so oncologists should know about renal medullary carcinoma, if a doctor doesn't, that's a problem, they should either help their doctor find a partner.
I will tell you that one way that I continue to be valuable in this field is there are a lot of people who can't travel to Houston or Nashville or the Bay Area people, there are a lot of people who just are too far away. And they have good doctors who just have never taken care of renal medullary carcinoma before. One of the benefits of the RMC Alliance is connecting the doctors with an expert who can then weigh in and help guide someone through the management of a patient that they're taking care of locally. So take away your medical oncologist, if diagnosed with renal medullary carcinoma should know about the disease, should feel comfortable to reach out to someone else, they are, if they are not experienced, and to use those various foundations as a resource to help get the right care.
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