Tag Archive for: second opinion

Are There Lung Cancer Outcome Disparities for Veterans?

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Are There Lung Cancer Outcome Disparities for Veterans? from Patient Empowerment Network on Vimeo.

Do lung cancer outcome disparities exist for veterans? Expert Dr. Drew Moghanaki from UCLA Health discusses veteran outcome studies for civilian versus VA healthcare, efforts on improving outcomes over time, and proactive advice for accessing the best lung cancer care.

[ACT]IVATION TIP

“…if you’ve got cancer, to really understand lung cancer, to really appreciate that there’s been a lot of advances and if you’re not feeling that you have access to those advances, get a second opinion and go to a bigger place that actually has an integrated approach to lung cancer care with a multidisciplinary team with the doctors in different specialties are working together and are focused on giving the best lung cancer care.”

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See More from [ACT]IVATED NSCLC Veterans

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Combating Disparities: Veterans’ Healthcare Access and Quality

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Veteran Lung Cancer Risk | Understanding Exposures and Screening Protocols

 Lung Cancer Care for Veterans | Advancements in Radiation Oncology

Lung Cancer Care for Veterans | Advancements in Radiation Oncology

Transcript:

Lisa Hatfield:

Dr. Moghanaki, can you discuss any disparities or differences in health outcomes among veterans compared to the general population when it comes to lung cancer treatment?

Dr. Drew Moghanaki:

Yeah, when it comes to lung cancer treatment, there’s new data that’s showing that since the discovery of better drugs and safer surgery and more effective radiotherapy, that survival rates are improving gradually, especially over the last 10 years. We’ve seen this same trend with VA data as well, that veterans, whether they’re getting care in a community or in the VA, the outcomes are getting better.

Are there disparities? Well, there’s notable disparities that we’ve identified which is that although outcomes in general are getting better for female and male and Black and white and other ethnic sections of the population, there continues to be a disparity in the civilian sector in that our Black patients, whether civilian or veteran, have inferior outcomes. And, of course, we know this is associated largely with other socioeconomic issues related to a long history of racism in this country that’s led to segregation and unequal access to health care and well-being opportunities.

But what we see in the VA, whether you’re Black or white, actually the outcomes are the same. So there’s something that VA is doing that’s addressing the barriers that are affecting people in the general population. And in fact, we see in some of our studies, Black veterans actually have better outcomes. And so we’re learning that it’s much more than just biology by itself, that there really are socioeconomic factors. And when you’ve got a healthcare system that’s more than just a healthcare system, it’s a benefit system as well.

We really provide a nice safety net that helps address those disparities. But the sad truth is that it definitely disparities do continue to exist outside the VA healthcare system. So my activation tip is, if you’re a veteran with maybe some less resources than others, again, check into the VA because the VA provides not just healthcare, but also a lot of support services, especially when you have lung cancer, which as mentioned, is just very difficult to deliver and requires more than just access to a doctor.

Lisa Hatfield:

And I’d like to mention a paper also that you published regarding improving outcomes over a certain time period. There was a paragraph in there where you had a discussion about potential contributing factors to the improvement of outcomes over time. Are you willing to discuss those a little bit, what those potential factors are for improving outcomes in patients with lung cancer?

Dr. Drew Moghanaki:

Yeah, there are three main components. One is making sure you get the diagnosis right. Making sure you do the right biopsies and you send the specimens for what’s called biomarker testing to make sure you know what type of lung cancer. There’s now more than a dozen different types of lung cancer. And if you don’t get that biomarker test, you’re not going to know. You’re just going to be treated with standard therapy. If you get the biomarker testing, you can get personalized medicine with a drug that’s more likely to work and probably safer than the older conventional chemotherapies, which still has a role. But sometimes we can skip chemotherapy altogether and go directly to a targeted therapy.

The second big advancement comes in the treatment delivery itself. So surgical treatments are now much less invasive than ever before. In fact, many of our patients, they go to the operating room, they wake up with four Band-Aids, and half their lung is removed. Remarkable technology using robotic and video-assisted technologies. Same with radiotherapy.

Patients lay on a table and the machine, the very sophisticated machine just rotates around them, zaps these tumors. The patient can actually drive themselves back and forth to treatment and go home and and live their lives. We’ve got patients getting lung radiotherapy, and they’re playing golf the next day. It’s unbelievable. And then the third really comes down to survivorship, which is that our patients, even if we really can’t cure their cancer, like a lot of advanced diabetes, we just can’t cure, we can keep our patients going as they live a high-quality life moving forward and make sure that their journey, unfortunately, with their lung cancer that they obviously didn’t ever want to have, that their journey is the best that it can be. 

So my activation tip here is if you’ve got cancer, to really understand lung cancer, to really appreciate that there’s been a lot of advances and if you’re not feeling that you have access to those advances, get a second opinion and go to a bigger place that actually has an integrated approach to lung cancer care with a multidisciplinary team were the doctors in different specialties are working together and are focused on giving the best lung cancer care.

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Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial

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Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial from Patient Empowerment Network on Vimeo.

What’s the latest in ongoing advanced prostate cancer clinical trials? Expert Dr. Ronald Chen from KU Medical Center discusses ongoing trials, the INNOVATE trial and NRG-GU008 trial, clinical trial benefits, and patient advice for gaining clinical trial access.

[ACT]IVATION TIP

“…ask if clinical trial is not available at your local cancer center, see if a second opinion through telehealth with a larger cancer center is possible, so that you can learn about clinical trial options and see if that’s something that you want to pursue.”

See More from [ACT]IVATED Prostate Cancer

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Expert Perspective | Aggressive Prostate Cancer Research and Health Equity

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How Can Prostate Cancer Screening Access Be Increased?

Transcript:

Lisa Hatfield:

Dr. Chen, can you talk about any clinical trials that are ongoing for people who are living with advanced prostate cancer? And in particular, any trials that you or your colleagues are doing right now that would be of interest to this audience? And my last part to that question is, if they are not able to access those easily, do you have suggestions for patients to access those clinical trials if they’re working with a local community cancer center?

Dr. Ronald Chen:

I think having access to clinical trials is very important for every cancer patient and especially patients who have advanced cancer. And the reason I think this is really important is because in advanced cancer, we’re not doing as well as we want to in terms of extending survival and potentially even curing some patients. We’re not doing as well as we want to, and there’s a lot of room for improvement. And the only way to improve the outcomes for patients with advanced cancer is through clinical trials. Clinical trials is where patients can access first new promising treatments that are not currently available widely because it’s not yet FDA-approved.

And so, I think access to clinical trials is important and often offers a hope for patients because of a new promising agent that they could access through the trial. So I think that’s really important. And there are actually multiple…there are actually a lot of open clinical trials ongoing around the U.S. for patients with advanced cancer, testing new drugs, testing new ways to deliver treatment. I absolutely believe that there will be a new treatment approved for advanced prostate cancer probably every year for years to come because of all the new trials that are happening because of all the new promising agents that have been developed, being tested right now. So I think that’s really important.

I want to highlight a couple of examples of trials, but again, there’s so many, it’s hard to talk about all of them. But I’ll highlight a couple. There’s one trial sponsored by the National Cancer Institute for patients with no positive prostate cancer, which is when prostate cancer has spread to the lymph nodes, and the trial is called NRG-GU008, we call it the INNOVATE trial; and for patients with no positive prostate cancer, even though the cancer has spread to lymph nodes, this is actually a group of stage IV prostate cancer patients where there actually is still a hope for cure. We could actually still cure some patients with no positive prostate cancer. And the goal of this trial is to improve that cure rate.

So maybe right now, with aggressive treatment for these patients, maybe we can cure 50 percent of these patients in this trial that will incorporate a new drug that seems promising, we’re hoping that maybe improves the cure rate higher, maybe to 70 percent or higher. And so, I think that is a really important trial for patients who have that specific diagnosis.

In terms of for patients who live maybe in an area that…where the local cancer center does not offer clinical trials, I think there’s still opportunity for them to learn about clinical trials and even participate. And what I would advocate for is to ask for a second opinion.

Second opinions in cancer is now actually pretty commonly available because of the arrival of telehealth. Even if you live in maybe a small rural area, you can still request a telehealth consultation from a larger cancer center by telephone, by video, and through that, you can ask about clinical trials that are available. And I think it’s important to pursue that, to learn about the options, to learn if there’s a new treatment that could be available to you before you make a final decision on choosing treatment. So with telehealth, second opinion, learning about options, I think there’s actually opportunities to access clinical trials that way.

So my activation tip for this question is, ask if a clinical trial is not available at your local cancer center, see if a second opinion through telehealth with a larger cancer center is possible, so that you can learn about clinical trial options and see if that’s something that you want to pursue.

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Accessing Quality Myeloma Care | Advice for Overcoming Obstacles

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Accessing Quality Myeloma Care | Advice for Overcoming Obstacles from Patient Empowerment Network on Vimeo.

How can you access the myeloma care that is best for YOU? Myeloma specialist Dr. Krina Patel shares advice for patients, including the importance of a second opinion and key questions to ask your doctor regarding your disease and treatment plan. 

Dr. Krina Patel is an Associate Professor in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Patel is involved in research and cares for patients with multiple myeloma. Learn more about Dr. Krina Patel.

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Elevate | What Role Can YOU Play in Your Myeloma Treatment and Care? 

Transcript:

Katherine:

What hurdles to patients face when accessing quality overall myeloma care and what can be done to get over these obstacles?  

Dr. Krina Patel:

I talk about this a lot. 

So, again I think the biggest problem for me is that because myeloma care changes so fast, which is a good thing that we have all these options and we have so many new therapies, it’s really hard for people who don’t do just myeloma to keep up. I don’t think I would be able to. I don’t do breast cancer. I don’t do other cancers, so when I take my boards every 10 years, I have to learn a lot to take those.

So, it’s just a part of the system that this the problem. So, I think if you’re seeing a local oncologist that sees five myeloma patients a year, they’re gonna be stuck on what was the treatment when they did it last time for that last patient, which again might be very different now because things change so fast. 

And so, again, you want to get to a doctor quickly, and I understand that. When people hear “cancer,” they’re like “I gotta get treatment. I gotta go fast.” But part of it is, if you need treatment quickly to get to your doctor. But then, try to make a second-opinion appointment done, even virtually because we can do that now after COVID; we have so many more options for that.  

And get that second opinion just to say “Is this the right therapy for me? Going forward, what should I do?” So, patients, “Should I get a stem cell transplant?” if you’re newly diagnosed or not. “What kinda maintenance should I be doing? Do I have high-risk disease or not? What are the nuances of my myeloma versus everybody else that we need to be careful about? Should we dose reduce?” There’s a lot of those types of hurdles. Patients, if they have kidney failure form their myeloma, we should be decreasing the dose of some of the medications; those types of things that really we can help with to make sure those outcomes are in the best. 

And that first treatment really does matter so that we can reverse as much as possible, for patients who have kidney involvement versus bone involvement, to decrease the pain really quickly. Do we need to get our radiation doctors involved to get radiation to help make sure you don’t get a fracture from a potential bone lesion. So, I think, again, I understand the urgency of seeing somebody, of getting diagnosed, and starting therapy.   

But quickly get to a second opinion so that they can help. And then, again, some of these patient advocacy groups are amazing for myeloma. And I think there’s just so much information there that you don’t want to get overwhelmed, but at the same time you want to start going a little bit at a time at those things so that you can learn more about what you need to be asking and doing.  

Head and Neck Cancer Care | The Benefits of Partnering With Your Healthcare Team

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Head and Neck Cancer Care | The Benefits of Partnering With Your Healthcare Team from Patient Empowerment Network on Vimeo.

How can head and neck cancer patients improve their care by partnering with their healthcare team? Expert Dr. Ezra Cohen discusses how patients can more actively engage in their care and treatment decisions, provides educational support resources, and shares key questions to ask providers about care.

Dr. Ezra Cohen is a medical oncologist, head and neck cancer researcher and Chief Medical Officer of Oncology at Tempus Labs.

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Transcript:

Katherine:

Why is it so important, then, for patients to engage in their care and their treatment decisions? 

Dr. Cohen:

I think it’s critical not only for patients but for their caregivers as well. And really, patients should arm themselves with information. And fortunately, we live in an age where information is more readily available. You don’t have to depend on a single source. Now, granted, that information can be confusing, and sometimes it’s way too confusing. Sometimes that information can even be misleading. So, one does have to be careful.  

But, having said that, I think it’s so important for patients to arm themselves with information, different approaches, and what I often tell patients is get a second opinion. With one caveat, that I’ll get to in a second.  Because the reason is this is a life-threatening diagnosis for, unfortunately, many patients. And the first approach, our first chance to treat it is our best chance to treat it.

So, you really want to make sure that you’re in a center that you’re comfortable with, preferably one that has experience. A provider that you’re comfortable with, that you feel at ease asking questions, you’re not intimidated and a plan that really makes sense for you and has taken into account what is this individual.  

What’s our best approach to this individual? Not to an entire population but what are we going  to do for this person sitting in that chair at this time? Now, the caveat for second opinions, especially for patients with locally advanced disease, there is a time factor. And what I mean by that is I have seen patients get multiple opinions and delay the start of therapy, which we now realize impacts our ability to cure the cancer.

And so, I would say it’s fine to get second opinions or even third opinions, but don’t take a lot of time doing it. The earlier therapy starts, the better our chance of curing the caner. So, there is sort of a balance there. 

Katherine:

Well, that’s great advice, Dr. Cohen. PEN has also created downloadable office visit planners to help you organize your thoughts and communicate effectively with your healthcare team.  

And that’s also in the toolkit I mentioned earlier at powerfulpatients.org. And I think this is a good segue into talking about the importance of self-advocacy. If a patient is feeling that they aren’t getting the best care or they’re uncomfortable with the care they’re getting, what steps should they take to change that? 

Dr. Cohen:

Well, I think the first thing is talk to the provider. Just have that conversation. I think we have to realize that oncologists are human, and they’re people, and sometimes they get very busy. Sometimes they don’t pay attention to as much as they should. And sometimes, they don’t even know that there’s a problem. So, I would say the first thing to do is have a frank conversation with your provider. These are my questions. Don’t be afraid to ask questions. Never be afraid to ask questions. These are my expectations.  

Can you meet them? And in my experience, not even just personal experience, but working with many oncologists over two decades, most oncologists will say, “Oh, I didn’t realize that this was what you wanted. Let’s make it happen.” So, that I would say is the first thing. Talk to the people that are already taking care of you. If, or whatever reason, that doesn’t work and you’re not comfortable, I would ask that provider, “Is there somebody else that – I would like to change. Is there somebody else that you would recommend?” In the worst-case scenario, that might involve going to a different institution. And the reason I say that’s a worst-case scenario is that especially in the setting of locally advanced disease, interrupting therapy or changing therapy in the middle really would have a dramatic adverse impact on outcome.  

So, I would try to avoid that as much as possible. If there are natural points in the care where it makes sense to consider a change, I think that would be a lot less impactful and make more sense. For instance, if somebody is going from having completed a course of chemotherapy radiation, they now have no evidence of disease on their scans, and they want to switch to a center that is closer to home, for instance. That makes sense. And we have certainly many patients that do that and that’s a natural transition. But, to change in the middle of care, that can often have a dramatic negative impact. 

Collaborate | Being an Empowered Myeloma Patient

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Collaborate | Being an Empowered Myeloma Patient from Patient Empowerment Network on Vimeo.

When facing a myeloma diagnosis, how can you actively engage in your care? This animated video shares tips and advice for becoming empowered in your care, including understanding and setting treatment goals and educating yourself about myeloma.

See More from Collaborate Myeloma

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Transcript:

Bianca: 

Hi! I’m Bianca, and I’m a nurse specializing in myeloma. And this is Suzanne, who is living with myeloma.  

Together, we’re going to guide you through a series of videos to help you learn more about your myeloma and we’ll share tips to help you play an active role in your care and treatment decisions. 

Suzanne, I must say, you’re a great example of an empowered patient.  

Suzanne: 

Thank you, Bianca! It wasn’t always the case, but I’ve had some expert guidance from my healthcare team – including you!  

Bianca, what does it mean to be an empowered patient, exactly?  

Bianca: 

We can start with the World Health Organization’s definition of patient empowerment, which is: “a process through which people gain greater control over decisions and actions affecting their health.” 

Suzanne: 

That sounds right to me—as I’ve become more engaged in my care, I’ve definitely felt more confident and in control of decisions.  But when I was first diagnosed with myeloma, I was overwhelmed…and so was my family. Once we took proactive steps to learn more about my diagnosis and find the right healthcare team, I was able to access better overall care and to feel confident about my role in decisions.  

Bianca: 

Exactly, Suzanne. Let’s walk through some keys steps to becoming empowered, starting with diagnosis and education: 

  • When considering your care team, it’s a good idea to seek a second opinion with a myeloma specialist.  
  • A specialist can confirm your diagnosis, help you define your treatment goals, and provide peace of mind about your decisions.  
  • And, you should also educate yourself about your myeloma. If you’re watching this video on the Patient Empowerment Network website, you’ve already taken this step! 
  • In addition, there are a number of other advocacy groups specific to myeloma that provide a wealth of resources and support. You can ask your healthcare team for recommendations for learning about myeloma.  

Suzanne: 

That’s right, Bianca. And, it’s useful to access to your online patient portal, if available. You can use the portal to view medical records and test results and to communicate with your healthcare team.  

And as I’ve learned, it’s also important to actively participate in your care. This means speaking up and asking questions, which is not always easy. Bianca, what advice do you have for better communication with your healthcare team? 

Bianca: 

  • First, always prepare for appointments by writing down a list of questions in advance. You can use the Notes app on your smart phone or download one of the Office Visit Planners on the Patient Empowerment Network website to help you organize your thoughts.   
  • And, try to bring a friend or loved one to appointments to help you remember information and to take notes. 
  • Finally, it’s essential to realize that your doctor wants to know how you are doing and is there to help you. If you are hesitant about a treatment option or a side effect is bothering you, let someone on your healthcare team know. You can even send a message through your patient portal. 

Suzanne: 

That’s great advice, Bianca! I like the convenience of communicating through the patient portal, particularly if questions come up after my office visit. Remember, you have a voice in your care decisions, so speak up and ask questions.   

Bianca: 

That’s right! And, visit powerfulpatients.org/myeloma to view more videos with Suzanne and me.   

Thanks for joining us!  

What To Do When Newly Diagnosed With Follicular Lymphoma?

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What To Do When Newly Diagnosed With Follicular Lymphoma from Patient Empowerment Network on Vimeo.

What should newly diagnosed follicular lymphoma patients take as next steps after diagnosis? Cancer patient Lisa Hatfield and Dr. Matthew Matasar from Memorial Sloan Kettering Cancer Center share advice for patients to be proactive in their care.

See More from START HERE Follicular Lymphoma

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Transcript:

Lisa Hatfield:

When you are first diagnosed with follicular lymphoma, you may not know what to do or what next steps to take. Dr. Matthew Matasar from Memorial Sloan Kettering Center shares what he encourages all his patients to do.

Dr. Matthew Matasar:

Everybody should have access to a second opinion pathology review.  This is independent of what the doctors are giving you advice in taking care of the illness, but just making sure that the diagnosis itself is correct. We know that the diagnosis of lymphoma is a tricky one for pathologists, particularly if they’re not pathologists that are seeing lymphoma under the microscope every day of the week. And when you go for a second opinion pathology review by having the slides sent to a major academic center, there’s a possibility that the diagnosis will be changed or revised in a way that’s meaningful meaning that it would lead to different recommendations for how to take care of your illness.  

Lisa Hatfield:

As Dr. Matasar says, you can ask your physician or community oncologist to send your diagnosis test results to another institution, particularly one with a lymphoma expert. Let’s listen as Dr. Matasar continues: 

Dr. Matthew Matasar:

You’re entitled to a second opinion medical review as well and going to see an expert in lymphoma if your first opinion was with a community oncologist or somebody referred by your primary care doctor who may not have singular expertise in these illnesses, can be helpful.

Lisa Hatfield:

The lymphoma expert that you seek a second opinion from may agree with your local oncologist and suggest collaborating with him/her on your care OR may suggest an alternative such as newer medications your local oncologist may not be up to date on or offer clinical trials. When you have this second opinion consult, be sure to ask questions like “Are there alternatives to the therapy my local doctor or you are suggesting?”, “What is the difference between my options?” and “Are there clinical trials or new drugs that I might be eligible for?”  We’ll go back to Dr. Matasar for his last recommendation now: 

Dr. Matthew Matasar:

Let your doctors know who you are, how you view things, how you like to receive your healthcare information. Are you a big picture or a detail person, and what are your priorities so that they can best match their recommendations to who you are as an individual, as a person, as a member of a family in the community so that they can give you the most personalized and appropriate recommendations possible.

Lisa Hatfield:  

By sharing with your doctor a little bit about you and your personality, you can set yourself up for success to get the best recommendations as possible. We hope these tips help you feel empowered as you begin your follicular lymphoma journey! 

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Dr. Jun Gong: Why Is It Important for You to Empower Patients?

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Dr. Jun Gong: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo. 

Why is it important to empower patients? Expert Dr. Jun Gong from Cedar-Sinai Medical Center shares his perspective on how empowering patients impacts them and specific ways he improves his gastric patient care.

See More from Empowering Providers to Empower Patients (EPEP)

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Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Jun Gong: 

So empowering patients is very important because we can only do so much from our side in terms of we have treatments to offer, we have prescriptions to provide, we have diagnostics we can do to work up certain maladies and illnesses. However, I think what we don’t grasp is how much happens at home. The majority of the time is the patient at home with their caregiver, with their family members? And here, I think it’s a very important pillar of treatment where not only is one pillar just from the oncologist side and from the doctor’s and all the healthcare providers’ side, the other pillar is what happens at home.

And this is where I think empowering patients is very important. This is where empowering them to control what foods they eat, what foods have been known to be risk factors for stomach cancer or any kind of cancer.

What foods to focus on, to building nutrition, to be able to tolerate chemotherapy or cancer treatment, to be able to boost your immune system. These are important aspects that are controlled really at the patient level and the family level. The other way to empower patients is activity. We often say it that, mother knows best. If you don’t use it, you’re going to lose it. And so debilitation is a big problem in our cancer patients as well.

So ways to promote activity, whether it’s just a walk, a daily walk outside the neighborhood, or even to more strenuous types of cardiac exercises. And here we actually have newer resources available in our physical rehab colleagues. Our cancer nutritionists are excellent resources as well. And these are just aspects of empowering patients on what they can do at home. Because I often find patients and family members ask, what else could we be doing beyond what we are prescribing in the clinic and what we’re doing in the hospital or the medical care setting?

The other aspect is to empower patients to know that it is appropriate, always appropriate to seek more than another opinion on your treatment plan. And we have a really, really close relationship from both the academic to the community level where we’re more than happy to review clinical trials, provide second opinions. Here is a very important part that we recognize that we are not here to, let’s just say, have patients stay with us for treatment. We envision a relationship where if a trial is not available, our recommendations should be to deliver these recommendations to the community provider so that they can provide day-to-day care because their care is just as excellent and they have just the same access to standard of care. We are here for a mutual relationship and partnership. It is not a one-way street, and it’s not definitely a black hole where if you refer patients to a larger academic center, are you worried that you won’t hear from the patient or from the provider? We always make it a close goal to have timely feedback to our referring partners. And this is just some of the few ways that I believe it’s important to empower your patients.

Thrive | What You Should Know About MPN Symptoms & Treatment Side Effects

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Thrive | What You Should Know About MPN Symptoms & Treatment Side Effects from Patient Empowerment Network on Vimeo.

How are MPN symptoms and treatment side effect managed? In this animated explainer video, an MPN specialist and myelofibrosis patient discuss the importance of clear communication with your healthcare team, the process for assessing common issues, and advice for advocating for yourself.

 

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Transcript:

Brian: 

Hi, I’m Brian. Nice to meet you! I’ve been living with a condition called myelofibrosis for many years. While there have certainly been ups and downs, I’ve been able to navigate care for my condition and to live a full life.  

So how have I been able to do that? First and foremost, I have a great relationship with my care team, whom I communicate with regularly. Meet, Dr. Liu – my doctor. 

Dr. Liu: 

Hi! I’m Dr. Liu, and I’m a hematologist and a specialist in myeloproliferative neoplasms or MPNs. The three types of MPNs are essential thrombocythemia, or ET,  polycythemia vera or PV, and myelofibrosis, or MF.  This group of blood cancers is characterized by the bone marrow overproducing a certain type of cell.  

Maintaining a good relationship with your healthcare team, coupled with finding a treatment approach that works for you, can help you live a full life and to thrive with an MPN. 

Brian: 

Exactly, Dr. Liu. Over the years, I’ve experienced periodic issues with my condition. I’ve had symptoms and treatment side effects that have been bothersome and interfered with my life. But, communication with my team has been essential to feeling well.  

Dr. Liu: 

That’s right, Brian. When symptoms or treatment side effects are bothering you, it’s important to let your healthcare provide know how you are feeling. 

Brian: 

For example, recently I felt tired beyond general sleepiness. And when I shared this with Dr. Liu, we discussed potential causes of the fatigue, and we talked in-depth about my options to manage it, including changing therapy and some simple changes to my diet and lifestyle.1 Over time, my energy levels improved, but having the open dialogue with Dr. Liu was essential to tackling this symptom head-on. 

Dr. Liu: 

That’s a great example. When I first hear from a patient that they are having an issue, we go through several steps to find a solution.2  

We start by ensuring that the disease is well-controlled, so we check blood counts. Next, we try to determine if it is a symptom of the MPN or a side effect of the treatment. Once we’ve done those steps, we come up with potential solutions which may include, but are not limited to: 

  • A dose reduction or a treatment holiday. 
  • Changing therapy to find something that is more well-tolerated. 

Other considerations are dependent upon the specific symptoms and side effects but may include: 

  • Supportive care options, including diet and exercise. 
  • A visit to your primary care doctor to see if there is something else going on physically. 

Brian: 

That’s good to know, Dr. Liu. Something you brought up with me, which I feel is important to mention, is mental health. Often, emotional symptoms can take a toll on the body, causing fatigue or other issues. 

Dr. Liu: 

Great point, Brian. Seeking care for your mental health is crucial, particularly if you are in active treatment. 

Brian: 

Of course, we know that the symptoms and treatment side effects for MPNs can vary widely, so what advice do you have for patients who may be afraid to speak up? 

Dr. Liu: 

The most important thing to remember is that we have options to help you, no matter what you are going through. It’s your body and if you don’t let your provider know what you’re going through, they can’t help you. 

Brian: 

So true. It’s also a good idea to bring a care partner along to appointments, sometimes a spouse or friend can you help you communicate what’s going on. 

Dr. Liu: 

That’s great advice, Brian. Bringing someone along to take notes is a great idea. Also, be sure to write down any questions or concerns you have in advance to make the most of your appointment. 

Brian: 

OK, Dr. Liu, let’s recap your advice for MPN symptom management: 

Dr. Liu: 

Good idea! First, remember that everyone’s MPN is different, so managing symptoms and side effects can be tricky. Communicating with your healthcare team is critical to your overall care – report any and all concerns to your team immediately. 

And, do your part. Make sure you see your primary care physician regularly and do your best to maintain a healthy lifestyle. 

Brian 

And, most importantly, remember you are at the center of your care. Never hesitate to share your opinion and to advocate for yourself. 

To learn more, visit powerfulpatients.org/MPN to access a library of tools. Thanks for joining us! 

Lung Cancer Care Decisions | Advice for Self-Advocacy

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Lung Cancer Care Decisions | Advice for Self-Advocacy from Patient Empowerment Network on Vimeo.

Program Description: Should you see a lung cancer specialist? Dr. Erin Schenk shares advice for being proactive in your lung cancer care, the importance of speaking up and asking questions, and the benefit of seeking a second opinion with a specialist.

Dr. Erin Schenk is a medical oncologist, lung cancer researcher, and assistant professor in the division of medical oncology at the University of Colorado Anschutz Medical Center. Learn more about Dr. Schenk.

See More From INSIST! Lung Cancer

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Transcript:

Katherine Banwell:

Because this program is part of our Insist series which empowers patients to insist on better care. Can you tell us why you think it’s important for patients to speak up and engage in their lung cancer care decisions? 

Dr. Erin Schenk:

Absolutely, and I think as a physician it’s important not only to partner with patients but as well as their loved ones and their caregivers who help navigate this diagnosis of lung cancer. There are some diagnoses in the world, cancer being one of them and lung cancer especially that can turn everything upside down. So, it completely changes your world. Suddenly the life as you’ve been living it, the plans you had they all have to be paused or halted in some way to get care for the lung cancer diagnosis.  

One of the – and one of the really hopeful parts about being a doctor who cares for patients with lung cancer is just the speed of the advancements and the speed of the changes in the treatment options that we have for patients diagnosed with really any type of lung cancer.  

And so, I think it’s really important when you’re meeting with your team and you’re talking with your cancer doctor to really try to understand what is the information that they use to make some of these decisions or referrals on your behalf? And also, think about, is there an opportunity for me to get another opinion about what might be the best options?  

Katherine Banwell:

When should patients consider a second opinion or even consulting a specialist? 

Dr. Erin Schenk:

I think any time it’s appropriate. We – at our institution, we’re one of the main lung cancer centers that – you know, within several hundred miles, so we frequently see patients and sometimes it’s just to check in and say you know, the patient says, “Here’s what my team has started me on. You know, what do you think should be the next approach?” and we talk about that, but really anytime I think is appropriate for reaching out for another set of eyes to look at things. I would say perhaps some of those most critical times would be prior to treatment starts especially if – yeah, I would say prior to starting a treatment with that new diagnosis.  

That would be a really critical time because often again, sometimes once we start down a treatment path, we’re in some ways we’re committed, but if that maybe isn’t the optimal treatment path based on, you know, the tumor and the biomarkers and the patient preference starting on that less optimal treatment path could potentially hurt patients in the long run. So, I would say at – you know, potentially at diagnosis when a treatment course is recommended and then if there is a need to change treatments.  

So, for example, especially in the metastatic setting there are certain therapies widely available. People are very familiar with them, can start them no problem, but when those treatments stop being beneficial that might be a time to also meet with a specialist or go to a lung cancer center of excellence to get their opinions on what to do next.  

Small Cell Lung Cancer Care and Outcomes in Underrepresented Communities

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Small Cell Lung Cancer Care and Outcomes in Underrepresented Communities from Patient Empowerment Network on Vimeo.

How does small cell lung cancer (SCLC) care look in underrepresented communities? Dr. Rafael Santana-Davila with the University of Washington School of Medicine explains how health outcomes differ in some ZIP codes and shares advice for questions to ask your doctor to access optimal SCLC care.

[ACT]IVATION TIP

“…patients should ask their doctors, ‘What are the latest advances in this disease? Am I eligible for it to receive those advances? And where can I see a sub-specialist in this disease? And is it a worthwhile point?’”

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

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Transcript:

Lisa Hatfield:

Does treating small cell lung cancer patients in underrepresented communities look different than the general population? And are there specific considerations or recommendations SCLC patients from underrepresented communities when it comes to treatment options, including clinical trials or targeted therapies?

Rafael Santana-Davila:

In the majority of cases, patients treated in underrepresented communities do not look different than in the general population in small cell lung cancer. Why? It’s because community oncologists are very good. So they have a hard job, but they’re very good. So the majority of patients get the standard of treatment.

Although we know though that patients with underrepresented communities do fare worse.  And we do not know the reasons for that. A lot of that is because of poverty or many other things. I’ve seen people say that one of the main factors that will determine how long you live is what ZIP code you were born in. So underrepresented communities do do worse in general, not specifically for small cell, but in general.

I do think that what we..like we said before is what patients need to do is advocate for themselves and ask their doctors, “Am I eligible for a clinical trial? Am I eligible for what is the latest and greatest for the disease? Any new advances that you see coming?”And like we said before is seek a second opinion with a sub-specialist in the treating of this disease.

So as like we said before in terms of activation, is you need to…patients need to ask their doctors, “What are the latest advances in this disease? Am I eligible for it to receive those advances? And where can I see a sub-specialist in this disease? And is it a worthwhile point?” Many times it may not be an initial diagnosis, but when patients have recurring disease, that’s when clinical trials are really important because that’s where we’re making the most advances in the treatment of small cell lung cancers, when patients have disease that has recurred despite chemo-immunotherapy.

So my activation tip for this is that patients should ask their doctors, “What are the latest developments in the treatment of this lung cancer? And am I eligible to receive those treatments? And is this a time where I should seek a second opinion or be referred to a clinical trial and another center?”

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AML Specialists and Second Opinions | Expert Advice to Patients

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AML Specialists and Second Opinions | Expert Advice to Patients from Patient Empowerment Network on Vimeo.

If you seek a second opinion, will you hurt your current doctor’s feelings? Dr. Jacqueline Garcia shares advice for seeking a consultation from an AML specialist, emphasizing timing and clear communication.

Dr. Jacqueline Garcia is an oncologist and AML researcher at the Dana-Farber Cancer Institute. Learn more about Dr. Garcia.

See More from Thrive AML

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Transcript:

Katherine Banwell:

If a patient is feeling uncomfortable with the direction of their treatment plan or their care, should they consider a second opinion or even consulting a specialist?  

Dr. Jacqueline Garcia:

Oh, 100 percent. I would say – I think that I’m spoiled. I’m a leukemia specialist, so they’re already seeing a specialist when a patient sees me. I don’t take care of any other cancers. But, I would say, for anyone seeing any oncologist in general, I would – number one, it doesn’t do the medical team any favors if you withhold any feelings of how the treatment’s going. Meaning, if you feel uncomfortable or that you’re having symptoms or people are taking too long to get back to you based on your experience.  

I would just make sure you do your best to at least let them know so that they have the ability to adjust or accommodate whatever need you might have that might be different than what they’re used to, because every patient’s different. Some people have a really great support system. Or they have a little bit of experience of being a patient. Different coping mechanisms. Everyone’s different. There’s no right or wrong. But I would just make sure that it’s clear with your existing team, because they’re actively seeing you. Give them a chance to make the experience better.  

I would for sure seek a second opinion. Don’t delay – I will just put this disclaimer. I would not delay treatment for an AML if your current doctor is giving you a good plan, and you feel confident that they have looked into whether or not you need to go to a bigger leukemia center and all that other stuff. But if you feel like they are giving you a good plan, don’t delay your therapy in the beginning, because you might get sick.  

If, however, there is demonstration of safety and time to see someone within a short timeframe for a second opinion at the time of diagnosis before treatment started, then that’s okay. But wouldn’t wait a few months to go looking around, because that could put your health at risk. Once you’re on treatment, seeking a second opinion, if you’re dissatisfied with your ongoing team, it’s fine. I always want patients to feel comfortable with their treatment plan.  

But I would recognize that you want to make it clear to your current team that they’re still helping you and responsible for your treatment. Because if you, for instance, started seeing multiple doctors and they won’t know who should be helping to follow up on certain things, who’s going to be scheduling the next round of therapy. And that ends up putting more ownership unnecessarily onto the patient where they might not have needed to have all that extra responsibility. So, I would just say just make sure that’s clear.  

Dr. Gabriela Hobbs: Why Is It Important for You to Empower MPN Patients?

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Dr. Gabriela Hobbs: Why Is It Important for You to Empower MPN Patients? from Patient Empowerment Network on Vimeo.

What are some ways that can myeloproliferative neoplasm (MPN) care providers can help empower their patients? MPN expert Dr. Gabriela Hobbs from Dana-Farber/Harvard Cancer Center shares her perspective of how she educates her patients. Dr. Hobbs explains her methods of empowering all her patients in their care – whether they’re newly diagnosed, needing long-term MPN care, or going on to seek care from other clinicians.

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Transcript:

Gabriela Hobbs, MD: 

I think that empowering patients is really important in developing an excellent longitudinal relationship with an MPN patient. And the way that I like to empower my patients is through education. And that starts with the first meeting with the patient when they’re recently diagnosed, or maybe they’re seeking you out for another opinion because maybe something is going not well with their disease.

And so that first visit, I really like to spend a lot of time educating about what MPNs are, the different types, the things that we worry about, the possibility of disease progression, and then spending a lot of time talking about the different treatment options that exist. As well as spending a lot of time talking about how patients can maximize their quality of life with both pharmacologic interventions as well as lifestyle modification. And so education really is at the center of empowerment for patients.

And I think that that gives them a lot of control over their disease and prepares them for additional visits with me or with other clinicians if they’re seeking other care from other clinicians as well, especially those patients that maybe travel from far away. And so education during that visit is important, but also talking to patients about how to prepare for additional visits. So I talk to patients a lot about taking track of their symptoms, keeping track of how they’re feeling, how they feel with the medication, with perhaps a change in medication, how they feel like their symptoms are changing over time. Talking to them about the MPN symptom assessment form, and making sure that they can utilize that form to keep track of how they feel.

And then also asking questions…If they don’t ask questions during the encounter, make sure that they write down those questions in a notebook so that when they do go to see their clinician at the next appointment, they can make the most of that encounter by knowing that they’re going into that encounter, prepared with questions and able to summarize the way that they’ve been feeling over the last couple of weeks or months since their last appointment. So education is really always at the center of empowerment. 

Reasons to Get Chronic Lymphocytic Leukemia Second Opinions

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Reasons to Get Chronic Lymphocytic Leukemia Second Opinions from Patient Empowerment Network on Vimeo.

Why are chronic lymphocytic leukemia (CLL) second opinions a  good idea? Expert Dr. Ryan Jacobs shares his perspective on CLL second opinions and how they can help in patient care.

Dr. Ryan Jacobs is a hematologist/oncologist specializing in chronic lymphocytic leukemia from Levine Cancer Institute. Learn more about Dr. Jacobs.

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Transcript:

Lisa Hatfield:

So say one of your patients, seeing you or seeing a hematologist, maybe a local hematologist who doesn’t see a high volume of CLL, and they ask if…what would, what do you think…or they ask of their doctor, what do you think of me getting a second opinion on my diagnosis? Because patients are scared for one thing and they want to make sure that they’re making the right decisions for themselves. How do you feel about patients seeking a second opinion?

Dr. Jacobs:

I always support it. Of course, with me, I am often the second or even higher number of opinions that has received. But I certainly, I’m not there at the biggest cancer center in the world. I trained there, but that’s not where I’m at now. So I’ve had patients that have gotten even a second or third opinion from me and then go off and get a fourth opinion at MD Anderson. So, in terms of what I want patients to understand with opinions is, one, if you get a lot of opinions, that can just make it kind of difficult. And, so I don’t know if I would really support a large number of different opinions.

I think certainly getting a second opinion is reasonable. But whenever you’re seeking another opinion, I think it really only makes sense if you’re going to a higher level of specification. So certainly it makes sense to go from a general oncologist, getting a second opinion from somebody like myself that sees a lymphoma as a specialty and does research in CLL. But if you’re already seeing a CLL specialist to then seek another one, I think it, yeah, maybe if you want to go to even a bigger cancer center or someone that has maybe published over more years, that’s fine.

But it certainly doesn’t make sense to go from one CLL specialist to somebody that is maybe even less focused in CLL. And sometimes you’d have to kind of be aware of just where you’re at. In general, the specialists are going to be at the larger cancer centers. You might find the name of a larger cancer center in a small cancer clinic. And it’s unlikely that just because the name of that well-known cancer center is on a small clinic site that you’re going to have access to a lot of specialists at that site, usually to support specialists. You’re having to be at a large, usually urban-located cancer center.

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Tackling Obstacles That Impact Access to Prostate Cancer Care

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Tackling Obstacles That Impact Access to Prostate Cancer Care from Patient Empowerment Network on Vimeo.

What obstacles may block access to prostate cancer care? Expert Dr. Channing Paller explains some common issues when seeking care and what is being done in the medical community to improve access.

Channing Paller, MD is the Director of Prostate Cancer Clinical Research at Johns Hopkins Medicine. Learn more about this Dr. Paller.

Download Resource Guide

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Transcript:

Katherine: 

Dr. Paller, what about clinical trials? Why should patients consider enrolling, and what are the benefits for them? 

Dr. Paller:

I like to tell my patients that once you have metastatic or advanced prostate cancer, we’re not doing placebo on you. If we’re doing placebo, it’s the standard of care plus a new drug, and we want to know if the new drug in combination with the old drug is better than the old drug alone. 

And so, I find those patients heroes, in one sense, for the future, right? They’re helping to approve the new drugs of the future, and I also find, oftentimes, those are the patients that do best, because they’re getting to try all of the new drugs of the future before they’re approved. And so, I will have patients that are, I call them chronic trialists because they’ll go through all my new drugs before they’re even approved. 

And I love it, and they love it, because they do better than the average, because they’re exploring all of the new therapies. And so, I find those patients heroes, and I really appreciate their efforts. I would say, the most important thing about clinical trials is learning about them, right? And being able to ask the questions. “Well, what phase is that trial?” So, Phase I is really testing safety, and finding the right dose for patients. And so, that’s usually a small number of patients, and looking exactly at, does this work? Do we have a biomarker to follow? What’s the best way to use this new drug?

Phase II starts to look at efficacy, as well as looking at side effects. And so, with Phase II, we really look at, what is the effect? Is it better than what we expected? Does it help these patients – is it better than some of the other drugs? 

And then, Phase III are usually large trials that are looking at FDA approval. They’re looking for registration with the FDA, getting approval, and being the new standard of care that’s paid for by insurance companies. 

Katherine:

I’d like to back up a bit and talk about the treatments that are currently available. Let’s start with surgery. What role does that play in treating advanced disease?  

Dr. Paller:

Surgery is one of the key tools that we use when we’re trying to cure prostate cancer when it’s localized, or just starting to spread. But if it’s too advanced, meaning, spreading to the lymph nodes, we usually don’t recommend surgery. So, surgery is usually used for curative intents, although there is a trial ongoing now, looking at the same question of, is adding surgery to systemic therapy helpful in terms of long-term cure rate, in terms of decreased side effects later, and local symptoms later?  

And so, we are asking that question. That is one of the ongoing clinical trials that we’re looking at right now, as a group. 

Surgery is terrific. Radiation is terrific. Really working with your team to understand for you, what are the side effects that you would undergo? What are the risks and benefits of each modality that you would like to, or that you’re willing to tolerate? And so, I think the differences between surgery and radiation, for curing patients, are really something that you need to discuss with your provider. The risk of erectile dysfunction, the risk of the local symptoms from the radiation, the risk of having bleeding from your bladder, the risk of bowel problems. Those are all things that that you – urinary incontinence – that you need to discuss with your physician. 

Expert Perspective | Key Advice for AML Patients

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Expert Perspective | Key Advice for AML Patients from Patient Empowerment Network on Vimeo.

Facing an AML diagnosis can feel overwhelming. Dr. Omer Jamy shares tips for newly diagnosed AML patients, emphasizing the importance of a consultation with a specialist.

Dr. Omer Jamy is a Leukemia and Bone Marrow Transplant Physician and Assistant Professor at the University of Alabama at Birmingham. Learn more about Dr. Omer Jamy.

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Transcript:

Katherine Banwell:

Dr. Jamy, for patients who have been diagnosed with AML, could you share three key pieces of advice for them. How can they be proactive in their care? 

Dr. Omer Jamy:

Sure. So, I feel like as a leukemia physician I would like to see, just to give you an example, I’d like to see all the leukemia patients in Alabama. But that’s not feasible, right? But what I would recommend to patients and caregivers is that wherever they are diagnosed, I do feel that they would benefit from a consultation with a leukemia physician at a tertiary care center or an academic center. And they would benefit due to various reasons, right? So, the first reason would be that as a leukemia physician my job is to just keep myself upgraded with leukemia care, leukemia management.  

So, one aspect of leukemia is therapeutics, right? So, drugs that are approved, easy to give. But the other aspect is understanding the biology of the disease, understanding how leukemia is going to behave. To get a better profile for AML for a patient. So, in a way saying that not all AML cases are the same. So, to be seen at a center would help the physician understand the unique cytogenetic or molecular profile of that patient’s AML which may be different from the next patient’s AML which could mean that the treatment algorithm for one person might be slightly different from the second person. So, I mean the academic and the people working at academic centers cannot survive without people working in the community, so it goes hand in hand. So, I feel like co-management of a patient with AML is extremely important. I feel like things will not get missed that way.  

I feel like the treatment plan, no matter where it is implemented, would really benefit the patient. It can be implemented closer to home as long as it’s been co-managed with someone closer to home as well as someone at the center where they have access to more information. What this would also help is get the person and the family plugged into a system where, let’s say if therapy wasn’t working, they’d have access to enroll on clinical trials down the line as well. Which unfortunately are only present at academic centers and not very widely available, especially for blood cancers. There may be trials for solid tumors easily conducted outside of academic centers, but unfortunately that’s not the case for blood cancers, specifically AML. So, the opportunity to enroll in clinical trials will also help.  

And then lastly, I feel like it’s our ability to offer bone marrow transplant to older patients has improved over the past 10 to 15 years.  

We’ve become better in identifying donors and in identifying patients, getting them ready for transplant that I feel that a person and the caregiver should inquire from their physician about the opportunity – oh, of No. 1 the need for transplant for the leukemia is because not all the AML patients may benefit from our transplant, but most of them do. And definitely anyone who relapses would benefit from a stem cell transplant.  

So, I feel like inquiring about that is very important because to get plugged in at a transplant center early on is important because you don’t want to waste time early on. You may not need the transplant, but just having the consultation and just having a preliminary donor search ongoing in the background is really helpful because when the time comes that a person needs the transplant, then you’ve already got some of that information ready, and you can proceed quickly. So, I feel like a few of those things might be helpful which I try to educate in the community as well and do outreach.  

Because I feel like it’s important to let people know that AML is an aggressive disease. Transplant is pretty intense, but we are now making it more and more tolerable for older patients.