Taking Charge: Educating Yourself and Your Healthcare Team

Published on

Topics include: Patient Stories and Self-Advocacy and Empowerment

In this MPN Patient Café® segment hosted by Carol Preston, Andrea and her partner Denise, give their perspectives on seeing a specialist and sharing information with your healthcare team.  Denise speaks about being a bridge between your specialist and local doctor while Andrea stresses the importance of communication. 

The MPN Patient Cafe is a Patient Empowerment Network program produced by Patient Power. We thank Incyte Corporation for their support.

View more programs featuring and

Produced in association with

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. 

Carol Preston:

Most people are seeing their community oncologist or maybe a local hematologist/oncologist, and they don’t either have the wherewithal, the drive, or for whatever reason to move beyond.

So I'm just wondering, do you ever feel sometimes that our local hematologists, it would be nice if they did some of that heavy lifting and took some of the onus away from the patient? 

Andrea:                 

Well, absolutely but realistically I don't think they can because the oncologist or hematologist deals with what, 15 or 20 types of cancer? And we are only one, small, very—a disease that is not well known like breast cancer or the other cancers. So do they spend a lot of time on it? Probably not. I go to a local fellow who didn’t know anything about the disease. And what I loved about him was when I started asking questions, he said, “I don’t know, but let’s find out.” And we would go online, or I would bring in a sheet, and he would read it, and then he would draw out for me the answers.

And he used to say to me, you are educating me. We are educating each other. That gave him the impetus to go a little beyond, because he knew I was coming in. So he would go and look: oh, what’s going on these days? So I think if we show interest and ask a lot of questions, a good hematologist will take that extra step. But we also have to be patient with them, because they have an awful lot of information to digest.

Carol Preston:   

And would you say that, for any patient—because you know, a lot of us patients say it’s really important to get one—if you can—one outside consult visit with a specialist. But it’s also very important to have this relationship with a local oncologist as well, and hopefully the two will work together, or the three. 

Denise: 

Yes, and I think the patient is kind of the bridge between the local hematologist and the specialist, and I think that is very critical, because the patient does need to—as Andrea said—you need to encourage your doctor to learn more, because they don’t know, and they’re not the specialist in it. But also that doctor needs to be willing to recognize that this is out of my ballpark or out of my range, and you need to go and explore with the specialist.

And so the patient person really needs to be the bridge, and in that, they’re in a great position, so to speak, because they mine the information from the local doctor, and then they also get the drill-down specifics from the specialist. And then they can go to the .org and the .gov and you can read these physic papers, and then all of the information starts to make more sense as you learn and educate yourself.

Andrea:                 

If you have time for patients, though. There are people—you ask them what their hemoglobin count is; they don’t know, and they really don’t want to know. And I understand that. Not everyone is a curious mind and wants to know.

Carol Preston:

They just want to be fixed. They want to feel better, they want to be treated. They want it to go away. 

Andrea:                 

Absolutely. And I think that’s why a local hematologist is very important, because you do build that relationship. And if the condition advances like mine did, they can see it, recognizeit, and send me to MD Anderson or keep me there.

I’m on transfusions again. If I didn’t have my local hematologist, what would I do? I'd have to find someone. I think that people—there are specific sources that help us, and they’re put in very easy language and they’re broken down by particular MPN. And I think that joining a support group is very important because you can talk one-on-one to regular people who are not intimidating. You don’t have a God complex or anything like that. Some people do. And I think it’s important—and they’re all over the country now.

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. 

Related Programs

MPN Patient Café®: How Do You Find Trustworthy Information Online?

In this MPN Patient Café segment hosted by Carol Preston, Andrea and her partner Denise share their tips and strategies for identifying credible MPN resources online.

Published:

Considering Clinical Trials: An MPN Expert Explains Why Treatment Options Matter With Myelofibrosis

Dr. Catriona Jamieson of Moores Cancer Center discusses considerations for clinical trials and how to talk to your doctor about them. Watch to learn about this treatment option.

Published:

Factors to Consider When Choosing Treatment for ET, PV and MF

At a recent town meeting in Chicago, Dr. Brady Stein helps viewers understand what should be considered when choosing a treatment plan for those with ET, PV and MF.

Published:

Advertisement
Join Our Community Register for Events Read Our Latest Blog
Advertisement

Page last updated on November 1, 2017