Tag Archive for: second opinion

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

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

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.

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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?

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.

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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?

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.

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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

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

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.

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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

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?’”

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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

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.

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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?

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

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.

See More from START HERE CLL

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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

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.

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Why Prostate Cancer Patients Should Consider Participating in a Clinical Trial


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

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. 

Eliminating Disparities in Breast Cancer | Tips for Navigating Inequities

Eliminating Disparities in Breast Cancer: Tips for Navigating Inequities from Patient Empowerment Network on Vimeo

How can breast cancer patients and healthcare providers advocate for underrepresented  patients? Expert Dr. Demetria Smith-Graziani discusses how some providers are working to reduce care disparities and shares patient advice to help ensure optimal care.

Demetria Smith-Graziani, MD, MPH is an Assistant Professor in the Department of Hematology and Medical Oncology at Emory University School of Medicine. Learn more about Dr. Smith-Graziani.

[ACT]IVATION TIP

“…get your list of questions together about your concerns about your diagnosis and your treatment, and if you are feeling like you’re not heard, look for other doctors to talk to to get a second opinion.”

Download Guide  |   Descargar Guía en Español

See More from [ACT]IVATED Breast Cancer

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Transcript:

Lisa Hatfield:

What are some of the actions being taken to combat or eliminate disparities in breast cancer? How can those in marginalized communities best advocate for themselves?

Dr. Demetria Smith-Graziani:

That’s a great question, and I want to start by saying that the true burden should be on healthcare providers of those within the healthcare system to reduce and eliminate disparities in breast cancer, because patients already have enough to deal with and are receiving discrimination and structural racism from society at large and within the healthcare system. So for providers, it’s important for us to really take a good hard look at our practices with patients, think about the way that we are relating to patients, are we making any assumptions about treatments our patients may or may not want, or may or may not be a candidate for. Are we making those assumptions based on something not related to factual data, like their breast cancer itself or other health problems they have, are we making those assumptions based on their insurance status, based on where they live, based on other social factors like race.

It’s important for us to really reflect on that and think about how we can be more equitable in the way that we deliver our care. It’s also important for us to advocate for our patients to make sure that they are receiving the treatment that they need, and sometimes that means advocating to their insurance company, advocating to our health system, our health care employers advocating to the government to make sure that our patients are all receiving high-quality care no matter where they are, and no matter who they are, now, knowing that we live in this unjust society, what can patients do to navigate these disparities and these inequities.

I think it’s important for patients to be as informed as possible to make sure that they are getting all of their questions answered by their doctor, and if you don’t feel like your questions are getting answered, if you don’t feel like your concerns are being appropriately addressed or acknowledged, please make sure that you get a second or a third opinion and talk to another doctor to see if they can answer your questions.

No oncologist is going to be upset with you getting more information from another oncologist about your treatment options, and it’s important for you to pick the doctor that you are comfortable with, that you have a good relationship with and that you feel like you can speak to honestly, and that will give you honest answers, so my activation tip for patients is to get your list of questions together about your concerns about your diagnosis and your treatment, and if you are feeling like you’re not heard, look for other doctors to talk to to get a second opinion. 


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How Can Endometrial Cancer Patients Advocate for Better Care?

How Can Endometrial Cancer Patients Advocate for Better Care? from Patient Empowerment Network on Vimeo.

How can endometrial cancer patients empower themselves for better care? Dr. Ebony Hoskins shares advice for patients who feel dismissed or unheard when seeing their care provider.

Dr. Ebony Hoskins is a board-certified gynecologic oncologist at MedStar Washington Hospital Center and assistant professor of Clinical Obstetrics and Gynecology at Georgetown University Medical Center.

[ACT]IVATION TIP

“…seek alternate care or another opinion. I think it’s very important that patients have a doctor that they trust and feel like they can ask questions for. I don’t, I really don’t think it’s okay to be dismissed.”

Download Guide  |  Descargar Guía en Español

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What Treatment Options Are Available for Advanced Endometrial Cancer?

Transcript:

Mikki:

Dr. Hoskins, what is your message to women who speak up and their concerns are dismissed and aren’t taken seriously?

Dr. Ebony Hoskins:

Well, Mikki, do you want to know my real answer? I don’t think you do. But I’m going to tell you anyway. So anytime I hear a patient that say they did not feel heard, I always say, “You understand that you can get a different provider, right?” So that also means that if a patient does not have the trust anytime you don’t have trust, you don’t have a relationship, and that it’s okay to find a different provider, or a doctor to make sure that you’re heard. And I have seen women who don’t have any type of gynecologic cancer who have come to my office for a second opinion. And when it, and I say, well, “Why are you here?” And they said, “Well, I was really looking for someone that looked like me that I could trust to tell me, because when I asked these questions, I was dismissed.”

And so I was happy to give the opinion, but really sad that this particular patient had to travel to see someone that they really didn’t need to see, to get an answer that she was actually looking for, and not looking for the wrong answer. She just wasn’t, her question wasn’t being answered. And so I think if you don’t have the trust, there are other providers in our communities and getting those names from either a primary care provider you know, and I always hit or miss on the online thing from family members, friends about doctors that they like or that have a good reputation in terms of listening to their patients.

Mikki:

I also have one patient, I mean not a patient. I have a connect that dealt with this, this right here. And she went to several doctors before she got her diagnosis and which means time had spanned in between that time and her trying to look and saying, “Hey, this is what’s wrong. This is what I’m feeling. I know it can’t be this.” And she’s just going from doctor to doctor. And in between that time she missed some care that she had needed in that time. So what would be your activation tip for someone like that?

Dr. Ebony Hoskins: 

I think, just like I said before, seek alternate care or another opinion. I think it’s very important that patients have a doctor that they trust and feel like they can ask questions for. I don’t, I really don’t think it’s okay to be dismissed. 

Mikki:

Thank you so much.


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Developing Research and New Myeloma Treatment Options

Developing Research and New Myeloma Treatment Options from Patient Empowerment Network on Vimeo.

What are the new developments in myeloma treatment and research? Dr. Brandon Blue discusses how the landscape of myeloma care has changed in recent years and treatment options for high-risk myeloma, and he shares developing research that patients should know about.

Dr. Brandon Blue is Assistant Member and Clinical Instructor in the Department of Malignant Hematology at Moffitt Cancer Center in Tampa, FL. Learn more about Dr. Brandon Blue.

See More from Evolve Myeloma

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Transcript:

Katherine Banwell:

Dr. Blue, the landscape of myeloma care has changed significantly in recent years. Are there new factors to consider when working with a patient to choose a treatment approach?   

Dr. Brandon Blue:

Yeah. The good thing about myeloma is it’s literally always changing, and that’s a great thing. Compared to some of the other cancers, or really even other diseases, sometimes we’ve been using the same things since the ‘90s. But luckily for myeloma every couple years we get something that’s bigger, and typically better. So, right now some of the new things that are available for patients are all the way from newly diagnosed, all the way to people who have relapsed disease. So, we have a lot of different options that we can potentially go into.  

Katherine Banwell:

Dr. Blue, what treatment options are available for myeloma that’s considered high-risk?  

Dr. Brandon Blue:

Yeah. So, unfortunately, there’s some people who have multiple myeloma whose disease does not follow the standard pattern. Unfortunately, what happens is that there are certain mutations that actually happen in the biology of those cancer cells that actually cause them to survive when they should be dying. And unfortunately, that means that sometimes the chemotherapy and the medicines that we give them becomes a little bit more resident. 

A lot of times when we give people treatment the one question they ask is, “How long will it last?” But, unfortunately, there’s some people who have those high-risk features that unfortunately, despite whatever numbers we tell them of how long it may last, theirs actually may last a little bit shorter, and the disease may come back a little bit quicker. So, what we have to do as the doctors, and as the team, taking care of these patients is maybe do things a little bit more outside of the box, and do things that might tend to be a little bit more aggressive. 

Because sometimes we have to match the aggressiveness of the disease. If the cancer itself is starting to be high-risk or aggressive, sometimes we may have to do some nontraditional things to kind of make sure that they have a good outcome and a good result.  

Katherine Banwell:

Dr. Blue, is there developing research that myeloma patients should know about? And what are you hopeful about?  

Dr. Brandon Blue:

Yeah. One of the things that happens right now is that we have CAR T that’s available for patients got approved by the FDA. However, the CAR T product that we currently have available only have one target, which is called the BCMA, or B-cell maturating antigen. 

Which is part of the plasma cells, however, there are so many other targets on the plasma cells that potentially can be targets for new medications. And the good thing is that there are actually new CAR T and medications that are being developed that actually target other things other than the BCMA.  

So then, it may come to the point where people get more than one CAR T down the road, and I think those are exciting clinical trials. Because if there’s multiple targets, and there’s multiple CAR T, maybe we can sequence them in a way that maybe we find a cure for the disease one day.  

Katherine Banwell:

That’s exciting.  

Dr. Brandon Blue:

It is.  

Katherine Banwell:

Dr. Blue, thank you so much for joining us. Do you have anything else you’d like to mention?  

Dr. Brandon Blue:

I just want people to know that it’s okay to get a second opinion. I think that regardless of what’s happening in your care, sometimes it’s always good just to have someone, especially someone who’s what they call a myeloma specialist, to review your case, and just make sure that you’re on the right road, and that things are going well for you. So, it’s something that I would recommend for anyone to do.