Collaboration Among Medical Centers to Deliver Optimal Care for Rare Cancers: What Patients Should Know

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Topics include: Treatment and Understanding

At a recent town meeting at Carolinas HealthCare System's Levine Cancer Institute, Dr. Michael Grunwald discusses how he works with patients living with rare cancers to ensure they receive optimal care. Dr. Grunwald shares the importance of having an open conversation and collaborating with patients related to care and treatment decisions. Hear why Dr. Grunwald believes these conversations lead to education and a better understanding for both the patient and physician.

This town meeting was sponsored by Incyte Corporation. It was produced by Patient Power in partnership with Carolinas HealthCare System's Levine Cancer Institute. 

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Andrew Schorr:

Hello and welcome to Patient Power.  I'm Andrew Schorr.  We're in Charlotte, North Carolina.  I lived here twice, and the second time after being diagnosed with myelofibrosis I needed a specialist who really knew about myeloid conditions.  I am sitting with that man, Dr. Michael Grunwald from Levine Cancer Institute here in Charlotte.  Thank you for being with us. 

Dr. Grunwald:

Thanks for having me, Andrew. 

Andrew Schorr:

And being back with the man who has been my doctor, very devoted to patients with MPNs.  So, Dr. Grunwald, I want to ask you at a community cancer center here, how you work with your patients in rare cancers to make sure that really the care that you can deliver is optimized for what's going on in the field.  Are you open to them asking questions, Dr. Grunwald, what about this, what about that, or I heard that at MD Anderson or at Mayo Clinic or what—in that kind of collaboration? 

Dr. Grunwald:

Absolutely.  I think openness is one of the most important features for a physician taking care of patients with rare diseases or any diseases for that matter, and oftentimes patients will come to me, and they will apologize for having so many questions. But I actually encourage having questions, because oftentimes that will lead to better education of the patient and better understanding for the patient and for me of the patient's disease process.  

And so I will collaborate with patients and with other physicians in our regional community here to take care of patients with MPNs.  Also, on occasion if there's something that I might not be aware of yet or if there's a clinical trial that might be available for a patient elsewhere that's not available here, I will seek out information about that from the university center elsewhere in the country.  

Andrew Schorr:

Mm?hmm.  Now, sometimes with clinical trials, and I know I have been in one, not in Charlotte but before I moved here, where some of the care was given where the trial was happening, but some of the care and the monitoring was done in the community, because I lived far away from that.  And that still happens, right? 

Dr. Grunwald:

Absolutely.  And it's on a case?by?case basis depending on what the particular drug is, whether it's already approved or not approved, and what the expected toxicities are and the needed follow?up for those toxicities.  But there are patients where I've collaborated with other centers around the country in taking care of the patients where I've provided antibiotics or blood transfusions when needed, and the coordinating site for the trial has provided the experimental treatments.  We also have had some studies that have been ongoing here at Levine Cancer Institute. 

Andrew Schorr:

Mm?hmm.  Now, you spent many years at one of our foremost medical centers in the world, Johns Hopkins, and you developed this special interest in myeloid conditions including MPNs, so you've brought that expertise to Levine Cancer Institute.  

Dr. Grunwald:

That's been part—that's been a big part of my focus in coming here is to try to build something that wasn't previously existing in Charlotte, and Dr. Gerber, who is one of my mentors at Hopkins and I came here together to start the program in myeloid diseases. And now we have two additional physicians, we have pharmacists, nurses, nurse practitioners, physician assistants, nurse navigators who work with us to take a care of patients.  So as a team we're trying to develop this expertise here, we're trying to teach patients and other providers about the diseases, and we're trying to increase the number of offerings here in the Charlotte region for patients with myeloid diseases. 

Andrew Schorr:

Right.  Well, Charlotte is a very fast?growing city.  I think for our audience it's important to not always assume that you have to go to the NCI cancer center for your care or all of your care, and I think experts like Dr. Grunwald are an example of—they have a lot of expertise, and as collaboration is needed they're open to it.  

So let's go back to patients or family members asking questions.  Is it safe to say there are no stupid questions?  People have to recognize you have a lot of patients to see and you have limited time, but if they—if somebody comes in with their short list of questions or communicates with your nurse in advance, I'm going to want to talk about this or that, that's all fair?  

Dr. Grunwald:

Absolutely.  And as we discussed, I encourage that behavior, and I try to time my patients’ visits so that I can answer all questions during the visit.  Sometimes patients will even come up with questions, or they'll remember a question after we've completed the visit, and I encourage patients to call or email me, and then I get back to them when I—as soon as I can to let them know what are the answers to the questions.  And if I think that it's—if I think that the series of questions is complicated enough to warrant a longer conversation, sometimes I'll bring the patient back in to have that longer conversation. 

Andrew Schorr:

Mm?hmm.  Yeah.  I would say that when I was here in Charlotte I would email Dr. Grunwald.  Sometimes you have—some hospitals you go through a secure server, but one way or the other that communication is so important.  

I want to thank you for your devotion to patients, you were devoted to me and my wife, and also for your openness in collaboration.  Thank you for all you do, Dr. Grunwald. 

Dr. Grunwald:

Thank you and thanks for having me here today. 

Andrew Schorr:

Thank you.  Andrew Schorr with Dr. Michael Grunwald from the Levine Cancer Institute.  All of us reminding you, knowledge can be the best medicine of all. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on July 17, 2017