Tag Archive for: lung cancer questions

How Can Lung Cancer Patients Take a More Active Role in Their Care?

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How Can Lung Cancer Patients Take a More Active Role in Their Care? from Patient Empowerment Network on Vimeo.

As a lung cancer patient, how can someone take a more active role in their care? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanya provide advice for patients to empower themselves and questions to ask themselves about their lung cancer care team members for their best care. 

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Transcript:

Dr. Nicole Rochester: 

What advice do you give to patients that you see so that they can feel empowered, Dr. Okusanya? Is there any specific advice that you give when you see patients and things that just helped them to take this active role that you’ve been describing? 

Dr. Olugbenga Okusanya: 

Number one, I tell patients to bring someone with them to their appointments, someone who can stand by as within reason someone who can be there to listen as well, because usually I say, if I tell you 100 things in an appointment which can legitimately have, I could give you 100 unique points of information and in one 45-minute visit. If you catch 30 of them or 35 of them, you really understand that. I think that’s a lot because they’re very emotionally charged. So, hopefully someone else is with you, maybe catches another 30 or 40, and that gets you to a point where you can really sit down later and understand. I encourage patients to take notes to write things down, and if they want to, to record, to have audio recording of the session, I wouldn’t say anything to you now that I wouldn’t say in a month or in a year, or anywhere else. I’m going to tell you exactly what I think and I…and if I have uncertainty, I will expose that uncertainty, I will let you know that this is a case that could go either way. And this is a piece of information that I’m looking back and forward between these two options and that really helps the patients later on go back and say, “Did I really hear that right? Did I really understand it right?” So that you can feel like you’re getting the best care, and I really think that you have to make sure that you feel comfortable with the provider. 

I think that’s just the number one thing. Are you happy with them? Do you like the way they comported themselves? Did you like the way they spoke to you? Did you like their staff? Also remember, you’re likely going to be interacting with their staff as much as you interact with the physician, so the other people in the office, the front desk people, the nurse practitioners, the medical assistants, those are the people that you’re going to spend a lot of time talking to. Did you have a good rapport with them? Also, all that stuff counts to make sure that you’re getting the best experience possible and that you can really be an advocate for yourself. 

Dr. Nicole Rochester: 

I just want to reiterate, you share so many pearls today, but I just want to reiterate a few of them, and they really resonate with me as a former caregiver and as a health advocate, but that’s the importance of asking questions, the importance of bringing a buddy, and I appreciate that, particularly in your field, when we go into a doctor’s office and the word “cancer” is stated, everything else goes out of the window, and even in less threatening situations, there’s data that shows that…I think about 20 percent to 25 percent of what we say as physicians is actually retained, so certainly when you get a bad diagnosis, that number is even lower, so bringing somebody with you who is not necessarily emotionally detached, but they can literally kind of be the note taker, and they may even pick up on some nuances and things that you may have missed as a patient is so incredibly important. I love that you’ve offered the option of recording, I think that’s also another tool that many patients and family members aren’t aware of, and I think there’s an assumption, and it’s true to some degree that doctors don’t want to be recorded, but knowing that that is an option. 

The fact that the care that we receive really is impacted by whether or not the person specializes in lung cancer, a thoracic surgeon, and being empowered to ask that question, “Is this your specialty? How often do you see patients like me?” And being empowered to ask those questions that ultimately won’t lead to improved care is just so incredibly important, and I think just everything that you’ve shared that really allows the patients and the caregivers to understand just how important their role is you’re the one that’s going to take out the cancer and you’re the one that’s going to get them better, but there are so many things that happen before that step, before they are on that operating room table that is so important 

Dr. Olugbenga Okusanya: 

I think for patients and their advocates, I think it’s really important number that you’re putting together a health care team. You’re putting together a group of people like the avengers. You’re putting together a bunch of people to come together to help you deal with this health problem. You are entering into a therapeutic relationship, so that relationship has to be healthy in order for you to have the best possible outcome, you should feel good about, you know, your doctor is going to be very skilled, become very knowledgeable, and just like we talked about before. You really want to find someone who has the heart of a teacher, someone who can sit down and explain it to you in a way that’s going to be digestible and that is going to be actionable. So, I think if patients and advocates remember that you want to build a really solid, a really healthy relationship with someone who’s going to help you take care of your health, I think if you do that, you’re going to be in excellent hands. 

Key Questions for Newly Diagnosed Lung Cancer Patients to Ask

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Key Questions for Newly Diagnosed Lung Cancer Patients to Ask from Patient Empowerment Network on Vimeo.

As a newly diagnosed lung cancer patient, what are key questions to ask? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanya share advice on questions to lung cancer care providers and the reasoning behind specific questions to work toward optimal care. 

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How Can Lung Cancer Patients Take a More Active Role in Their Care?

Transcript:

Dr. Nicole Rochester: 

What are some key questions that patients and care partners should ask at the very beginning when they are first beginning this journey with lung cancer? 

Dr. Olugbenga Okusanya: 

So, I would say…question number one that I would ask is like, “Do you specialize in this? Is this something that you do on a regular basis? What percentage of your practice is lung cancer care?” You would really like an answer that’s more than 50 percent, you would like someone who sees lung cancer patients and takes care of lung cancer patients as a matter of routine. And something I would also say as a patient, you kind of want your care to be routine, you don’t want to be someone where things are just being figured out for the first time, you really want to have someone who does this all the time. The other questions I would ask are, “Can you tell me what all the options are, not just the one you’re offering to me? I really want to know what all the options are.” And I always tell patients the options are really very broad. And a physician chose the option is one, you may want to not do anything that is an option, you know saying, “We know it’s there, we understand, and we’re going to watch it or not do anything,” is a very reasonable option they should tell you about biopsies or surgery or non-invasive therapeutic modalities. 

You really want to say, “I want you to give me the laundry list, all the things that are possible in the institution that I’m sitting in.” And then I would also ask, “What are the things that you are not considering before that might be options? What are the things that maybe you’ve ruled out in your mind, and can you tell me more about that?” Because we’re very physicians, we’re very good at heuristics, really good at skipping steps and making next logical jobs, so it’s good to ask one of those steps that you skipped in your mind, and why did you skip them?” And then the last thing I would ask is, “Is this the kind of case that should be discussed in a multi-disciplinary clinic or conference? Is there anybody else I should talk to about this problem?” And I think if you can ask those questions and feel very confident about asking those questions again, most practitioners who are high level and specializing in this will not be offended, they will be glad that you’re asking the question, it will be a relief for both of you. I think if you can ask those questions, you can really help to eliminate some of those ascites and really get on the right trajectory from the beginning.  

Dr. Nicole Rochester: 

Those are such important questions, starting with the first one you provided, which is, “Do you specialize in this?” I think that we spend a lot of time sometimes betting, other professionals, even hair stylists, or if we want to get our car fixed, we want to go to the person that specializes and whatever is wrong with that particular problem, but we don’t always take such care with our most precious commodity, our body. So, I think that’s so incredibly important that we ask that question, and it’s not to make bad comments about those who don’t, but people like yourself have trained for many years, and there’s something to be said about that when this is your area of focus, and this is what you do day in, day out. So, I love that, I also really love what you said about kind of getting inside of the brain of the doctor, because you’re right, we’re skipping steps and we’re going through algorithms, but we don’t often bring the patient into that process, and so I really love the idea of the patients questioning, “Are there things that you didn’t consider and why?” And really having a full understanding, understanding of all of those treatment options, and maybe if the doctor has erroneously ruled out one of those possibilities based on maybe an assumption that gives the patient an opportunity to clarify that. 

Dr. Olugbenga Okusanya: 

And I would say, as a patient, oftentimes, we want to ascribe very positive feelings towards your physician, it’s a notch, a very natural thing to do because you want them to be good, so that eventually you’ll be good, and they’ll take good care of you. You want to ascribe those positive thoughts, and I think that’s very reasonable. But we should approach that with a little bit of question, because this is someone who has a lot of information and a lot of knowledge, and you want to make sure you are getting everything in the middle, so it doesn’t get lost in translation. You want to make sure you’re there for that conversation. 

Empowering Lung Cancer Patients to Increase Their Treatment Options

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Empowering Lung Cancer Patients to Increase Their Treatment Options from Patient Empowerment Network on Vimeo.

How can lung cancer patients be empowered to increase their treatment options? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanya explain ways to improve access to lung cancer treatments and to process information more completely for the best care. 

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Transcript:

Dr. Nicole Rochester: 

If we shift gears a little bit and talk about access and some of the concerns about treatment access for lung cancer patients, we know that sometimes these barriers that patients face actually limit their access to treatments, and you indicated surgery as being the mainstay and some difficulties with that, so how can we empower patients so that they don’t feel limited in their care, and how do we make them aware of these treatment options that are available, so that if they are in an office and maybe something’s being offered, but that’s not actually, the standard of care, how do we empower them to get that information and then to act on it? 

Dr. Olugbenga Okusanya: 

Yeah, so number one, which is something I think people do and they don’t realize how valuable it is, bring a friend to the appointment, don’t come by yourself, because you are in an incredibly vulnerable position, you’ve learned or are learning something incredibly emotionally charged and usually very scary. So, you want to bring someone who obviously is going to love you and care about you, but has enough emotional distance from it that they can be your advocate, they can ask those questions in the room that you may just not be there mentally to ask. Number two, never be afraid to get a second opinion, if you’re lucky enough to live in a populous area with multiple health systems, get a copy of your chart, get a copy of your data, get your disc, make an appointment to see another specialist in another health system and see what they say. Because at the very least, if the information is concordant, then you’re going to feel pretty good about saying, “Okay, then I should just go where I think I feel best or who I have the best sort of relationship with?” And again, if you are not lucky enough to have that opportunity, I would be very aggressive about seeing if telehealth is an option to reach out to someone who is a specialist, I’ve had not happened to me in the past, I remember I had a woman who telehealth, me from Ohio, because she’d actually read one of my papers about lung cancer, and she sent her scans, uploaded them, I looked at them and I gave her my opinion, and this is the new age or medicine. 

This is where we’re at now. This is a viable option, and even if telehealth isn’t an option, you can always just get on the phone. As a lung cancer specialist, a lot of the information I need can be garnered from test scans and images, so frankly, the physical exam has some role, but is not the mainstay of how a lot of the decisions are made. So even if I see your scans and I talk to you, I can give you an opinion over the phone, it takes me 15 to 20 minutes, and a lot of times, those visits may not even be charged, depending on who you actually ask to give you an opinion. 

Dr. Nicole Rochester: 

I’m a huge proponent of second opinions, I’ve talked to so many patients and family caregivers who think that they’re offending their doctor if they ask for a second opinion, so I appreciate that you brought that to the forefront and you deserve to have multiple opinions as you’re making these very important life-changing decisions.

How Can BIPOC Lung Cancer Patients Guard Against Health Inequities?

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How Can BIPOC Lung Cancer Patients Guard Against Health Inequities? from Patient Empowerment Network on Vimeo.

How can BIPOC lung cancer patients guard against health inequities? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanya share advice for questions to ask your doctor and ways to ensure optimal lung cancer care. 

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Transcript:

Dr. Nicole Rochester:

What are some things that patients of color can do in order to protect themselves from these inequities that you’ve talked about, starting with diagnosis and treatment, what can we do? What can patients of color do? 

Dr. Olugbenga Okusanya: 

So, I think the number one thing is to ask questions, the number one thing is to say, what are my options? What am I dealing with? What should I do or what shouldn’t I do? And to really make sure you get the most at that time when you see a physician, because that is really what we’re there for apart from the surgery, I’m really there to be an educator. I teach as much as I operate on a daily basis whether it be the medical training is whether in my patients, my job is to communicate information back and forth, so you really want to spend the time asking questions and getting as much information out, as much as you can. Number two is, see a specialist. There’s also very good data to indicate that as a Black patient, if you see a board-certified thoracic surgeon, you are more likely to get lung cancer surgery than if you were to see a surgeon of unknown specialization, a general surgeon. So clearly the training gives specialist the ability to make finer determinations and discernments that I think in large part favor Black and minority patients, so you want to find someone who deals with these disease processes all the time because they’re going to look at it in a much higher level and look at it with a lot more granularity. 

Dr. Nicole Rochester:

Just have to repeat what you said, you said, I teach as much as I operate. That just really resonated with me, and I think that…that’s so incredibly important. Doctor means teacher, right? I think that’s the Latin…we are obligated to teach our patients, so I just really appreciate that that’s something that you incorporate in your daily practice.