[ Inglese] Top 5 Tips to Get the Most Out of Doctor Appointments

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Topics include: Self-Advocacy and Empowerment

A lot can happen in between doctor appointments, and it may feel overwhelming to try to squeeze in all of the concerns, issues and questions into one consultation. What can people do leading up to a visit to better equip themselves for one-on-one time with their doctor? Patient advocate Michele Nadeem-Baker shares from her experience living with chronic lymphocytic leukemia (CLL) the top 5 tips for making the most out of appointments. Michele also shares how to avoid miscommunication and increase understanding about a person’s treatment plan and symptom management. Watch now to learn ways to arrive to appointments feeling prepared and leave feeling accomplished and at ease with no questions left unanswered.

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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.

Michele Nadeem-Baker:

Good afternoon. It’s Michele Nadeem-Baker, and I’m a Patient Power reporter. I am a patient reporter here for Patient Power and very happy to see you today. I’m glad you’re joining us. We have a lot to go over. 

So within today’s broadcast, I’m going to give you hints of some future ones. It all started with my husband and I sitting at breakfast this past Sunday, and we were talking about our journey. And it’s our journey, because he’s been with me every step of the way. Thank you, honey. Our CLL journey, it’s been—it can’t believe it—six years since I was diagnosed. There have been peaks and valleys, which I’m sure a lot of you have gone through since the day you were diagnosed until where you are today. And we’d be really curious to hearing from you right now if you want to tell us how you have felt and how that journey has been—your lowest times, your highest times.

But I’m going to try to help you today in finding out what I’ve learned on the five most important tips for making the most out of your next doctors’  appointments. But it’s going to take some homework on your part. But also in the next broadcast, we talk about some of the other things that I have learned on my journey—my CLL journey that a lot of us are in together so that you don’t have to take as long to learn as I did so that what I have found that you can learn about first-hand and not have to go through the trials and tribulations I have.

So with that I just want to tell you the top five ways to make the most out of that doctor’s appointment. And the first one is that homework I was talking about. And that’s really you should be keeping a journal. And on your iPhone or Android, there’s a Notes section. It’s on the home page, and it’s a yellow icon in case you don’t use Notes. And why I’m showing this to you is if you have any kind of symptoms or are experiencing any new aches, pains—this is before treatment, during, treatment, after treatment—it’s very important to make a note. Put down the date, what it was, and if it happens again, continue to make notes about it so that at your doctor’s appointment you can talk about it. That way when your doctor says, anything new, and you try to think about it, then you’ll have it right there. 

So now what are you going to do with all this information? You have all of these notes. For instance, for myself, had I known this before treatment, I would have made notes of a few things, such as what I thought were hot flashes because of my tender age ended up being night sweats. But night sweats aren’t necessarily just at night, but being the very literal person I am I thought it meant that. But, in fact, they were not hot flashes. They were night sweats, and they had been progressively been getting worse. And had I made note of that, I would have been able to show my doctor how many times a day—never mind what days—it was every day. But how many times a day, then I would have seen how much that had increased over time—this was before treatment. 

During treatment, I would have noticed other things, such as—and I did start to note these things—such as how often I was breaking out in what I call hives or all-over body itching and rashes. So if any of you have had those types of things, please write in and tell us. Or if any of you have a different way of recordkeeping to remind yourself of these kinds of symptoms, please let us know. The Notes section is what works best for me on my iPhone, because it’s always with me, and I can just make notes. Some people just keep a journal, a diary of these things—any of those will work as long as you have something to look back on.

Now the next thing I want you to do—step number two—one week before your next oncology appointment, mark it on your calendar every time one week before, it’s an easy way to think of it. Sit down, take a few minutes and think about how you have felt since your last appointment. Have you been feeling better? Have you had any new things? Are you more tired? Are you feeling oddly, any aches and pains? Just remember you may not think it’s anything, the doctor may not. But if they do, it’s an important thing. Another example of that is I just learned that I have neuropathy. I did not mention it at all, because again I wasn’t sure. I had tingling in my hands. I had dexterity issues. But there were so many other things happening I didn’t think of it. But I explained it finally, and I was told I have neuropathy. I wished I had told them earlier. So I had made that mistake myself. So I want you to sit down take a few minutes one week before your appointment, write down anything new, write down any questions you may have about your last appointment, about tests, about something you’re worried about, anything. And I want you to send your top three to four questions to your doctor, anywhere from two to three days prior to your appointment. Don’t send it the night before. That’s a little short notice. But send those by email or your patient portal to your oncology team, to you doctor, the lead doctor—the doctor you work with mostly—and tell them that you’d like to review that in your appointment.

So now tip number three is for when you do have your appointment with your doctor, go over the questions that you have sent until you have your answers and that you’re satisfied and understand your answers. And also go over anything else that you’ve forgotten to say or ask your doctor about, but do not be afraid—and the reason I keep mentioning this—to ask questions if you don’t understand something, because doctors have a lot of information, they know a lot more than we do. And the terms that they throw around they don’t realize sometimes that we don’t understand them as patients. They’ve gone to school a long time to learn these, and it’s second nature to them. The people they work with understand them, but they don’t always know if they throw out a term and they loosely describe it, you still may not know what that means for you. But I want you to be able to understand that. If they say you’re in remission for example, ask am I in complete remission? How would you state my remission in your report? Would you say that I’m ready for treatment or how long until treatment? And how far progressed have I been if you’re not in treatment yet? If you are in treatment, how much longer do you need to stay in treatment if there’s not a predetermined amount of time? And just ask what they’re going to put in their report and that you understand what it means.

Tip number four, is there anything new out there on what you have? IIs there anything new such as, is there a new treatment? Is there a new clinical trial that perhaps you would like to be on that you are suitable for? So that would be a very good thing to do. I’m sorry that was another call coming in, and I was distracted for a second here. But my producer here is taking care of it. I see that she has answered it. 

And number five—this is live after all, sorry. This is one of the things that happens. Number five is be prepared that you can have some miscommunications from your medical team. And this means that they may something that you don’t understand or that you misinterpreted, or perhaps you didn’t get the full amount of information. Perhaps you were told something again you’re in remission, but perhaps you’re not in complete remission. Or maybe you’re in something called ICR, incomplete complete remission. Try to figure that one out, right? So there are all sorts of things that we may not understand. And I know a lot of patients I’ve spoken with, myself included, you ask a few questions, and you don’t want to be a pain. But you know what, your life depends on it. So be a pain if you don’t understand something, or just say I’m sorry I don’t understand that, doctor. Can you explain that a little more for me in layman’s terms? And that’s going to help you.

So the five tips, anyone remember what they are? They’re all based on open communications. The first one is your own communications, taking notes on your phone or on a notepad if that’s easier, any symptoms that you’re feeling or feeling a little different or a little off, put the dates, how long it lasted for. That way you have a record of it. 

One week before your next appointment, sit down, take a few minutes, review those notes. And review in your mind how you’ve been feeling, if there’s anything you have questions on that you’re not understanding, maybe you’ve forgotten something. Send your top questions two to three days before your appointment to your doctor.

Tip number three, you’re at your doctor’s appointment. You want to make sure that you review your questions, you get your answers. And if there’s anything else that day in your tests and your exam that you have questions on, compare your last visit’s results to your current results and others. How are you doing? Ask your doctor, how am I doing, doctor? Am I getting better? Is my disease progressing? How do you think? That’s a very good thing to ask.

Tip number four, any news, any new discoveries, any clinical trials, anything the doctor knows that’s happening out there that you would like to know? Or anything perhaps that you’ve discovered and that you’d like to tell them? Or maybe a new side effect that you’re experiencing and what you’ve done to counteract it? That happened to me recently at the dermatologist at Dana-Farber and that I learned just my own steps of discovering online. A lot of you on ibrutinib (Imbruvica) I know have written to me that you have breaking nails, thin peeling nails, cuticles that are pretty much destroyed as a side effect. I found something called horse hoof, this odd little cuticle cream that they also use on horses, works great. So now my dermatologist is suggesting it to patients. So you can help as well. Again communications, patient-doctor, doctor-patient.

And number five, just be prepared for miscommunications. Just go back and ask more questions if you’re not understanding something if you thought you heard it a different way than what’s in the report. Again, communication is key, and knowledge is the best medicine. 

Please write in to us from this broadcast and let us know your questions, things that you’ve used to help you through your doctors’ appointments to keep your information, top-of-the-mind awareness when you’re in there. It’s a scary thing to have to go through as we all do as patients and send those in to us as suggestions, and they’ll be shared with everyone else watching. This is Michele Nadeem-Baker for Patient Power, and this is your patient reporter live from Boston. Bye.

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 30, 2019