Tag Archive for: stage IV lung cancer

Methods to Improve Lung Cancer Physician-Patient Communication

Methods to Improve Lung Cancer Physician-Patient Communication from Patient Empowerment Network on Vimeo

What are some ways to improve lung cancer physician-patient communication? Experts Dr. Lyudmila Bazhenova and Dr. Jessica Bauman share methods they’ve used and potential ideas for future studies to improve care.

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Transcript:

Dr. Nicole Rochester: 

I wonder if either of you or both of you have any thoughts around unique things that you’ve implemented that have allowed you to really connect and communicate with your patients in spite of these time limitations. Are there any unique things that you all have implemented in real time, like face-to-face, when communicating with patients?

Dr. Jessica Bauman: 

So I would say we did a pilot study that has not been implemented full time, and really I think we’re still working on how to best implement something like this but we did a pilot study using sort of educational materials, and this whole sort of pathway and educational system in coordination with our nurse navigators, where you could send sort of a prescription to the patient of reading material or of educational material, as they’re going along. And so, with the idea that early on that one of those prescriptions would be more information about molecular testing and biomarker testing, decision-making, all of those types of things.

We did a small pilot study to incorporate that, which on the surface is fantastic but it was surprisingly challenging to do, to actually implement. And I think that was…we were doing this, again, in collaboration with one of the researchers, the nurse researchers at our institution, and we hit more barriers than expected, because I think we all, as you say, we all want to educate, we all want to make sure that our patients understand and get the information that they need, but the practicality of doing that really successfully and in a streamlined way but that’s also consistent across providers across the institution, it’s a challenge.

Dr. Nicole Rochester: 

Yeah, I can imagine. Are there a chance to extend the pilot or to maybe modify it based on what you all learn from the initial study?

Dr. Jessica Bauman: 

I think that that’s…it’s certainly in discussion about how to best implement something like this. Part of that is…again, sort of systems change. The role of the clinic nurse, the nurse navigators has changed a little bit and so even how we envision implementation is going to need to shift somewhat.

Dr. Nicole Rochester

Wonderful. What about you, Dr. Bazhenova? Any pilot studies or any other maybe tips and tricks that you employ independently?

Dr. Lyudmila Bazhenova

Yeah, we haven’t had any pilot studies but I think the more I think about it…so the challenge of discussing those molecular testing with the patients is the fact that majority of those molecular testing discussions happen in stage IV patients and majority of those discussions happen during the first visit for a patient with stage IV lung cancer where we just discussed that this is an incurable cancer with limited life expectancy. And then how much does our patient actually absorb anything else we said afterwards is still remain to be seen. And I actually have seen like when I talk to the patient because they are so understandably fixated on their prognosis and survival, because it’s going to affect their lives that after that my patient asked me a question that I know I’ve discussed it already because I have my spiel.

I tell the same thing to everybody. And I think now kind of thinking about it out loud after that, during that discussion and maybe we could set up another appointment with a nurse practitioner afterwards, that after the patient kind of already digested all that information, to go over again the management of the molecular abnormalities. And one thing I actually want to highlight and build upon something that Bauman said before, that in those patients we actually usually wait for the molecular testing to come back before we start their therapy. And it is much easier to just prescribe chemotherapy immunotherapy for those patients.

But then you’re going to run into issues of toxicity because if you gave immunotherapy before you give for example EGFR TKI and some ALK TKIs, you can actually going to run into toxicity and you can permanently prevent your patients from continue on tyrosine kinase inhibitors. And so that’s why this is an information that not all oncologists, especially those who practice in a tobacco belt where they don’t see a lot of oncogenic-driven patients, they might not be aware of that. And I think how do we pass that information to the physicians, and also how do we pass that information to the patients that there is an easy way, but easy way in this situation is not the right way. 


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How Can Lung Cancer Physician-Patient Communication Be Improved?

How Can Lung Cancer Physician-Patient Communication Be Improved? from Patient Empowerment Network on Vimeo.

Lung cancer physician-patient communication can sometimes present challenges. Experts Dr. Lyudmila Bazhenova and Dr. Jessica Bauman share factors that can create challenges and methods they’ve used to improve their communication and patient care.

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Methods to Improve Lung Cancer Physician-Patient Communication

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Transcript:

Dr. Nicole Rochester: 

Can you each share some examples from your own practice around improving physician-patient communication that may serve as exemplary for providers that are watching this program? And we’ll start with you, Dr. Bazhenova.

Dr. Lyudmila Bazhenova: 

I think it also has some challenges, because in the current environment of practicing medicine, we are, as physicians, we are pushed to see more patients, it’s all about productivity. So when you do that, something has to give. And a time that we can spend with the patient is limited. And I think it’s important, for myself, as a practice, I have the same, I call it spiel that I give to all my patients. It’s the same picture I write down when I speak and I give that paper to the patients. I’ve had, you know, created some preprinted things that I used to give to the patients. Don’t do it anymore. But I think that’s another thing, have some kind of information that is a patient level that I can give to the patients.

And I think we have to educate the patients as well, either by ourselves or using the platforms that we are exhibiting here, that is outside of our primary institutions. And to make sure that the patients are aware that each one of them who have a stage IV lung cancer, as well as early stage lung cancer needs to be tested for the molecular testing. And kind of put it also have the patient question the physician, did you do that? Was that test done? That’s one part of information.  And I think the second part is, we do have to do better in allowing our patients to get a faster access to us. And we kind of accept the fact that we are going to be working after hours. When the clinic is over, that’s where I’m going to go to my charts, and I’m going to answer my patient’s question.

It’s kind of an intrinsic, is the work of the physician. Hours is…unfortunately, doesn’t really count. There is no limit to that. So whatever it works, like having a nurse educator. We have in our institution, we have…we call her tissue coordinator, but she’s the person who can actually make sure that the tissue is done, she can also make sure that reports are sent to the patient and make sure that patient has ability to ask questions of somebody. And I think the EMR, electronic medical record, it’s kind of a love-hate relationship, I think, with all of us. But one thing that I find it made it much easier for me is to communicate with my patients using my chart and this ability to release the result to the patient by one click of a button, that saves time for me so I can spend that time to actually visit the patient and explain to the patient what needs to be done.

Dr. Nicole Rochster: 

That is awesome, thank you. Do you have anything to add, Dr. Bauman?

Dr. Jessica Bauman: 

Yes, yes, I agree that I think that this overall requires a lot of education, and especially when patients come in and they want to know tomorrow or yesterday, actually, what they’re going to get for treatment and what we’re going to start with. And so telling them that actually we still can’t decide for at least another week or two, that in of itself can be challenging. I think the other piece of this that’s always important is, in general, when we’re doing molecular and biomarker testing, we’re looking for changes in the tumor, we’re looking for what we call somatic mutations, but there is also the second concern where on rare occasion, issues with molecular testing can bring up issues with germline testing, meaning some abnormality that’s found that may impact their own familial risk for cancer, and so that of course requires a lot of thought and careful education as well, in addition to the treatment decision-making that we’re really ordering the test to decide upon.


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Stage IV Metastatic NSCLC Shares Key Learnings on Her Journey

Stage IV Metastatic NSCLC Shares Key Learnings on Her Journey from Patient Empowerment Network on Vimeo.

Lung cancer patient Carol shares her journey with stage IV metastatic non-small cell lung cancer (NSCLC). Watch as she discusses the symptoms she experienced, how she pushed when her symptoms were dismissed, and key learnings that empowered her on her journey.

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Transcript:

My name is Carol, and I was diagnosed with stage IV metastatic  non-small cell lung cancer (NSCLC) at the age of 53. My initial symptoms were dismissed, but I advocated for myself to receive an accurate diagnosis.

My lung cancer journey began in an emergency room right after New Year’s Day 2022 with severe headache symptoms of head pressure, pain, and vomiting. I knew it was not a normal headache. The ER team started to treat me for a migraine and wanted to send me home. I pushed back and explained that I’d been experiencing symptoms of fatigue, frequent headaches, dizziness, and a weird buzzing sound in my ear over the last few months. I knew that I didn’t feel right and insisted on getting a brain scan.

After waiting hours to get in for the brain scan, they were shocked to find 10 brain metastases. Then a PET scan uncovered the root cause – a tumor in my lung and multiple metastases throughout my body, including leptomeningeal disease. Back when I started having symptoms, I tried to book an appointment with a neurologist, but there wasn’t an opening until February. I shudder to think what would have happened if I had left the ER on January 3 to wait until February. We know our bodies best and need to make sure we push for answers when we know there’s something more to the story. This pushing can be uncomfortable, because no one wants to be labeled “a difficult patient”, but it’s our health – and sometimes our life – at stake.

Following my diagnosis, I received one round of chemo until my genetic testing came back with the EGFR exon 19 deletion result. Then I was switched to a more targeted medication and still receive monthly infusions for bone mets.

Physically my treatment allows me to live an almost normal life enjoying my previous activities of golfing, hiking, and  gardening. And I’ve been surprised by my mental strength and positivity in the face of this horrible disease. Sure… I have times when helpless or sad or angry feelings come up, and I need to embrace and FEEL them, but overall I feel thankful and hopeful.

Some things I’ve learned during my lung cancer journey include:          

  • If something doesn’t feel right with your health, speak up and don’t stop pushing until you get answers.
  • Pay attention to your body when you experience multiple symptoms.
  • Focusing on helping others is another way to take your mind off of your own worries.
  • My friends and family are a big source of emotional support, and we are all going through this cancer journey together. So, I find that it helps them to feel useful when I give them small tasks to do, so they feel like an active part of this journey.

These actions are key to staying on your path to empowerment.

Lung Cancer Advocate Shares How to Optimize Your Telemedicine Visit

Lung Cancer Advocate Shares How to Optimize Your Telemedicine Visit from Patient Empowerment Network on Vimeo.

How can lung cancer patients optimize their telemedicine visits? Watch as lung cancer patient Jill shares her top tips for how to prepare for virtual visits and how to advocate for yourself when communicating for optimal care.

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Transcript:

Jill:

One thing that someone else recently mentioned to me is to be patient with the doctor who might be late, and I don’t mind actually, the doctor’s late or early. I’ve had a doctor be up to half an hour early or up to an hour late, and that doesn’t bother me, I just go on living life and doing other things while I wait for the call, but I do book a bigger chunk of time on my calendar with the expectation that doctors are really busy people and they can’t always predict how long something else will go or what would come up, so it’s good to be understanding about it for sure. 

It’s also helpful for me and a lot of people to write a list of questions, symptoms, and make sure that you get them all answered, so write them down and actually check them off, or cross them off while you’re in the appointment, because you don’t wanna walk away from there thinking, oh shoot, there was that one big question I had and some doctors are okay with getting an email or something between appointments, and some nurses are great to call, but not everyone has that opportunity. 

So, I would say, make the most of your appointment just like you would in-person. Take good care to make sure that you’re advocating for yourself, and if the doctor says words after you ask your cost your question, you don’t feel like you understood them. Don’t be embarrassed or afraid or anything… just ask again, ask for clarification. Sometimes these doctors talk in big words, and my doctor has been great, my oncologist he would like draw pictures and I ask him often to write words down for me if I don’t know how to spell them because why would I know how to spell that? I don’t have a medical and oncology degree, so there’s no shame in asking questions, asking questions is smart, and it helps make us better informed, and it’s true that a better informed and a better-informed patient is a more empowered patient, and we tend to have better outcomes, when we know what’s going on in our treatment, so take the time to ask your questions.

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Understanding Telemedicine Pros and Cons for Lung Cancer Patients

Understanding Telemedicine Pros and Cons for Lung Cancer Patients from Patient Empowerment Network on Vimeo.

What can lung cancer patients expect for telemedicine opportunities and challenges? Watch as lung cancer patient Jill shares some situations telemedicine has served well and some patients who have run into care disparities.

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Transcript:

Jill:

Telemedicine offers some opportunities as well as challenges, so I’ll speak to some of the challenges at first, which are…we don’t in-person, tend to build relationships as quickly. In general, I find when we’re just talking over the phone, when we’re in-person, we can get to know each other more comfortably, for the most part, everyone is unique, so you could be different, but for me, the relationship-building aspect is something that I’ve missed out on to some degree. 

And the doctor may miss some visual cues, so for example, there might be something that he or she would pick up on, would notice some sort of symptom or side effect that we had perhaps not noticed, we’re not, thought important enough to raise. So those are challenges. How do we get past not being able to see each other, so also, what if the doctor is delivering some tough news that could be harder to do if we’re not in-person, if we’re not able to see those visual, non-verbal cues, that can help us understand how to help the doctor understand how the patient is processing, receiving the news. Another thing is that sometimes patients, and I’m not going to say that I do this, but I’ve heard quite a few patients say that they might try to hide some of their side effects because they’re concerned that they’ll get a reduced dose and they’re concerned that it won’t be as effective. 

Now, from what I’ve heard, you know I understand that’s not a really wise choice to make, but everyone makes their own choices, and so if the patient is trying to hide the side effects from their doctor and their nurse, it might be more helpful for that patient to actually be present with their healthcare team, so the healthcare providers can actually notice and pick up on things. 

The opportunities are really powerful though, because it frees up so much more time for the system and generally, we often, I’ve had an awful lot of appointments, I know my oncologist quite well because I’ve had the same one since 2013, and we don’t need to talk for a long time, so usually 10 minutes is good and it saves the travel time in. Also, it opens up possibilities for remote consults with potentially anyone anywhere in the world, which is so terrific as an opportunity for a second opinion perhaps, or for someone who doesn’t have a doctor in their community, it makes it so much easier for them to gain access to care that they need.

And we really need to focus on the disparities that occur, especially people in rural and remote regions can miss out on some of the best healthcare. And if this is a great opportunity for us to serve them better.

Lung Cancer Patient Shares Why Telemedicine Is an Important Tool

Lung Cancer Patient Shares Why Telemedicine Is an Important Tool from Patient Empowerment Network on Vimeo.

How can telemedicine serve as a vital tool in lung cancer care? Watch as stage IV lung cancer patient Jill shares how telehealth has helped her during the COVID-19 pandemic and how she views it in the future of her care.

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Transcript:

Jill:

I was diagnosed with stage IV lung cancer back in 2013, and prior to the COVID pandemic, I had never had a telemedicine appointment, but now that I’ve had quite a few.

I think they’re such an important tool in lung cancer care, especially during a pandemic, when they protect us from exposure to various potential infections, not just COVID, but it can protect us from illness, so that’s terrific. But also, they’re really convenient, I just have a quick 10-minute appointment, there is no waiting in the waiting room, there’s no traveling to the clinic, which is…I’ll be honest, that’s not a very big inconvenience for me because I live quite close to my cancer center, but especially for people in rural and remote regions, what a game changer it can be to just be able to talk on the phone or perhaps have a video chat with a health care provider. So, I think that telemedicine is a very important tool in lung cancer care, and I hope that it will continue, maybe not 100 percent of the time, but there will still be available to him after the pandemic is over.

Lung Cancer Patient Shares Top Tips for Utilizing Telemedicine

Lung Cancer Patient Shares Top Tips for Utilizing Telemedicine from Patient Empowerment Network on Vimeo.

Stage IV lung cancer survivor and nurse Gina has taken advantage of telemedicine opportunities in her care. Watch as she shares her perspective about the benefits of telemedicine and her hopes for the future. In Gina’s words, “..no matter where they are in the world, I don’t think that where you live should determine if you live, I think everyone should have access to the very best care…”

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Transcript:

Gina:

When it comes to telemedicine, I think that we have to think of it as an adjunct to care, so it wouldn’t replace your actual care with your doctor, and so I think that utilizing telemedicine would really just be kind of like getting a second opinion, getting somebody else to look at your case, and it would have been an opportunity really for you and your community doctor to work with an expert in the field, wherever, whatever disease state you’re being treated it with, and I think that’s one of the silver linings of COVID that we can use, so it wouldn’t necessarily be that telemedicine is taking over your care, but it’s really just an adjunct to your care. So, you would still be touched by your doctor, you still would be assessed by your community doctor, but that community doctor would be leaning on the expertise of the doctor in which you’re getting a second opinion or you’re consulting with…so I think that’s the way that we have to think of telemedicine and diversifying and really making sure that everybody has access to the best care, it’s not really in placement of your normal care, but just an adjunct, so in addition to your care. 

One thing that I really hope that we can benefit from is…I hope that we can really learn from COVID. We learned that really there is a disease that is not defined by borders, and so I hope that we can use the opportunities and the things the way that we were, so I guess we persevered in spite of a disease, I hope we can use that for clinical trials to and so what I mean by that is I feel like the silver lining of COVID was telemedicine, and we were able to provide telemedicine to patients no matter where they were, no matter how they felt, they were able to have the best of the best care right in the comfort of their own home. And so one of the things that I actually personally benefited from was because of COVID, telemedicine was open up everywhere, and so I was able to actually get care from some of the best ALK cancer experts in Boston through telemedicine, and so I wasn’t actually required to travel to Boston instead, I could meet with that doctor by Zoom, and sadly, once the COVID mandates were lifted, that hospital was no longer providing telemedicine, so I was getting this great care, this expert advice in my disease process, and all of a sudden it was stopped, and so I hope that one of the things that we can do is figure out ways to utilize telemedicine to really bring the best care to patients no matter where they are in the United States or really…no matter where they are in the world, I don’t think that where you live should determine if you live, I think everyone should have access to the very best care, and I think it can be delivered through telemedicine.