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Speaking Up: Tips for Collaborating With Your Healthcare Team

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Published on October 1, 2018

How often should myeloproliferative neoplasm (MPN) patients visit their doctor? When should patients increase the frequency of their appointments? MPN expert Dr. Mark Heaney, from Columbia University Medical Center, explains the changes in an MPN condition to look for, how newly diagnosed patients can put the disease in perspective and tips for partnering with your oncologist. Patient advocates Ann and Jonna, both living with polycythemia vera (PV), also share ways to prepare before doctors' appointments, the importance of speaking up and how to maintain an open dialogue with your healthcare team.

Sponsored by Incyte Corporation.

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Transcript | Speaking Up: Tips for Collaborating With Your Healthcare Team

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.

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:

How do you decide, when somebody comes to see you, when you want them to come back?

Dr. Heaney:                  

So for people like Jonna and Ann, I typically—who are on a stable regimen and doing well, I usually see them about every three months. And a patient’s whose disease looks like it’s changing, when they seem like they need phlebotomies a little more often, I usually shorten that up, somewhere between one month and two months. And, every visit, my patient comes in, they lie flat, I press their—their stomachs. I take out my tape measure, I measure their spleen, and—and when that changes, that—that can also precipitate a change in the frequency of visits, if I think there might be some hint that—that the disease might be moving.

Andrew Schorr:            

Let’s talk about communication for a minute, because we’re in partnership, and this is a Partners program. So, Jonna, do you go in with a list of questions for Dr. Winton, or how do you—because, let’s face it, you went through a lot of worry, you have a daughter who’s in college, you want to live a long time, you want to deal with this fatigue? So how do you communicate with your doctor so you feel more confident?

Jonna:                          

Well, if I’m on these Facebook support pages or if I go to the Patient Power website, and I watch videos or I read articles, I write down any questions that may be concerning, about PV, about progression, about treatment, and I save those questions for my next doctor’s appointment and then, when I go in, Dr. Winton is always willing to take the time to answer any questions and concerns that I have and he’s—he’s sometimes put my mind at ease. So I just save up a list of questions between my appointments and then I keep that list and he and I talk about it when I go in.

Andrew Schorr:            

Sounds like a great plan. How about you, Ann. You’ve had a longer journey and you’ve had some changes and doctor changes along the way, too.

Ann:                             

I do write down a list. Luckily, Dr. Stein is real good about emailing questions, so if there’s something odd on my blood test that are ordered by my local hem-onc, I can send him a quick note and I usually have a response within an hour. So we have the opportunity to do that. Now, I will, in September, switch over to seeing him every three months and that relays – allays all my fears. 

Andrew Schorr:            

So, Dr. Heaney, you have people who may walk in, who are newly diagnosed. You’re diagnosed with one of these conditions you’ve never heard of. Maybe you read older stuff that talks about a progression, like we’ve been talking about and older stats on life expectancy and you’re terrified and, I know you probably don’t use these words to tell them to ‘chill out,’ but how do you calm people? How do you allay fears for the new patients, family members who come in today.

Dr. Heaney:                  

So I think part of it is—is putting the disease in perspective and I—and—I think, for most patients, this is a disease that’ll last decades and sometimes many decades and so I usually try to frame it that way. At the same time, I think it’s important for any patient with diseases in this family to know that it has the potential to be a serious disease and—and that’s one of the ways that they partner with me  that—that when things changes, they may notice a change or their family members may notice a change before I would, on the next visit and so having them spy in that way and—and find another way of—of getting that kind of information can be really helpful. 

But I think a lot of it is just giving people the information that they know and also letting them know that what we know today is—is probably not necessarily applicable for the life spans of our patients. Most of those data, as I mentioned earlier, are so old that—that they may not really be applicable for right now with medicines who we have the potential to be disease-modifying.

Andrew Schorr:            

So, Ann, you’ve – you’ve found it important to speak up for yourself. Like, when you knew that you were having trouble gardening and bending over, ding ding ding, got to talk about it. In other words, what would you say to people to speak up for themselves when they’re noticing something different in their body. 

Ann:                             

With this disease and how few doctors actually run into someone with polycythemia and how few hematology, oncology doctors at local hospitals are actually hematologists, you have to learn to speak up for yourself from day one. If you have a question, ask it. Don’t say “Oh, if I don’t ask, it’ll be okay.” If you see a red cell that you don’t understand. If you see something on a report on the differential or enzymes, if they’re doing a complete metabolic panel, ask, always ask. You’ve got to advocate yourself. And, once you do and you learn the nomenclature, it’ll be so much easier for you to also stay up on the current literature, which helps. 

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.